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What do I want to say?

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Member

Re: What do I want to say?

Thank you, Sunflower. I hadn't heard that. Most people on here seem to be treated in some form or other quite quickly after diagnosis, though it took them nearly 2 months to decide how many areas I had (multi focal). They started me on Letrozole when I went back for my lymph node results. I thought I was doing OK the first two weeks and may get away quite lightly. This is the third week though and side effects are kicking in now!!

 

Just over 3weeks to go to the op. How are you doing? Have I imagined it or read that your op is on 16th. I remember the date because I have a preop appointment with the surgeon whose doing the reconstruction on that date. Feeling quite weary now and brain fog becoming a bit if a problem, so I could be wrong re you dates/situation. Xxx

Community Champion

Re: What do I want to say?

That's a very long time to wait . I thought 3 weeks was an eternity ! At least you can now prepare yourself practically and emotionally as you have a date to work to towards .
Member

Re: What do I want to say?

Finally, I've got my date to get this thing out of me, Sunday 29th April. That's 6 months since I had the mammogram that found the blasted thing. It seems such a long time away and it's already been in there too long.

 

I'm back to not knowing how to feel. I'm elated it's (they) going to be gone, but now feeling the loss I'm having to accept for that. Excitement I'm closer to the final stretch, but starting to be fearful of the op and waiting for the pathology results and what happens next.

 

It's "good" to know so many of you have come through it (wish none of us had to though), but it still feels so lonley at times.  The worst thing is seeing new people coming on here and knowing exactly how they are feeling. I use the name fairy dust, because I've always tried to help when people have come to me and I've always said I need a fairy wand so I can make everything OK oh, if only!

 

I would be interested to know if there is anyone out there who has had to wait this long for treatment, though, as I'm sure my wait can't be right. If this had happened to someone I knew I would be getting to the bottom of it, but as you'll realise, you only have the energy for so much at a time.

 

At least I have a date now. 

Member

Re: What do I want to say?

I'm told that I now have a 35mm cancer in my sentinel node the other 5 removed were clear. Talk of doing a level 1 clearance when they do mastectomy and reconstruction. Has anyone else had this diagnosis with lymph nodes and if so, what was done for them and have they had any problems with lymphoedema or anything else.

 

I'm now on Letrozole (seem OK so far but only 6 days) and am still waiting for a date to get it out of me. Has anyone else waited this long (12 December)?

 

Feeling really tired and like my brain isn't fully functioning. I think it's gone through so much this last few weeks it could really do with a rest! I don't know how I feel other than still really scared of everything there could be in front of me.

Community Champion

Re: What do I want to say?

Good luck Fairy Dust .
Member

Re: What do I want to say?

This wait's nearly over. I find out whether it's had a party in there and sent out any messengers or whether it's stayed put. It's has so long to to it's own thing since the first biopsy on 12th December (13 weeks ago). I was told then that nodes were clear (ultra sound and fine needle biopsy). Really scared that they've left me too long without treatment and things have escalated. I need that op date to get the 4 areas out of me! Has anyone else had to wait this long?

Member

Re: What do I want to say?

First day after lymph node biopsy. I've got a drain in! Wasn't expecting that. It's got to stay for 2 weeks. I'm obviously a bit sore and despite the drain I've got a lump under my arm. Feeling better than I expected though. Three taken out and praying that the results, which I get 2 days before my birthday are a better present than the one I got 4 days before Christmas.

 

For ladies who haven't had this done yet, from someone who is such a baby, needle phobe and who was so scared going to the hospital, they were brilliant with me. I had found the 4 biopsies I had in December very painful and traumatic. The needles for that had terrified me of the radioactive injection for this operation. I was so worked up, but it was nothing. I hardly felt it! It was so much less than a blood test or inoculation. I felt so silly for getting so worked up. It really was nothing.

 

Then, the anaesthetist, who was an angel, gave me gas to put me out before the cannula etc., so I didn't know anything about the needles. I told her I loved her before the gas and when I was coming round! Knowing that this can be done will make me less fearful for the next one. If you're like me with needles and they don't tell you about this, ask them. It made it much less of an ordeal. The anaesthetist had told me she was going to do this when she saw me on the ward. Yes, I was still nervous, I was having an operation, but I wasn't hyperventilating and close to tears as I would normally (or abnormally) have been. Oh and the nurses on the ward put some numbing cream on the back of both my hands, just in case. They were all brilliant with a complete whoos and I made sure I told them.

 

Just the dreaded long wait again now for results. 

Member

Re: What do I want to say?

 
Member

Re: What do I want to say?

Thank you again, Helena for being there. I think if I could harness the strength of the women on this site, we'd be able to rid the world of this @#$%&* thing once and for all. X

Community Champion

Re: What do I want to say?

Fairy DUst

 

Oh just as a word of warning, the dye does turn your urine and motions blue for a day or two but dont be worried it soon goes xx

Community Champion

Re: What do I want to say?

Fairy Dust

 

If it is like me I went in the day before my op to have an injection which is the first bit of the radioactive dye part.  It is a very small injection which all you feel is a tiny scratch thats all, I did not even realise that she had done it and I absolutely hate injections.  The dye is put in as part of your op so you will know absolutely nothing about that bit.

 

I think with any op they suggest to take about two weeks off but your team will be able to advise you on that.

 

Well my dear the tough pants come into their own at times like these and never forget they have very big pockets so that we can all be there with you.

 

Helena xxx

 

 

Member

Re: What do I want to say?

Well, I have at long last got some progress. Still no date for the main op, but I am having sentinel lymph nodes done on Monday. I have a bad needle phobia and am dreading the injections for the radioactive stuff and the dye, but it will be the waiting for results again that will be worse, I think. Any advice on what to expect and how long to take off work gratefully received. I'll know I'll be taking those lovely tough knickers you sent me, Helena. I get the feeling this is when I am going to really start needing them.

 

It really is a wonder any of us remain sane after all this!

Member

Re: What do I want to say?

Hello - good news re your plastic surgeon.  I think the problem is that the breast surgeons work to guidelines that say they can only remove an unaffected breast if you have significantly elevated risk of getting a contralateral cancer in future (e.g. BRCA gene), although as you say they are allowed to do symmetrisation surgery.  However, i think there are some ladies who have managed to get an elective double mastectomy by insisting it was necessary for their mental health going forward, which seems to be your position.  Of course if you have the double DIEP it may not work at all or not on both sides and you will have no feeling in either breast - just to be aware. And you may need further corrective surgery to improve the shape (as i do).  Would you feel happier if you were able to have, e.g. an ultrasound on your unaffected breast every 6 months so that any issues that did arise could be caught v early?  Are you also having chemo?  Can you start that now while you continue to explore your surgical options?  What does your medical oncologist say?  Best of luck. Xx  

Member

Re: What do I want to say?

Haven't posted for a while as I'm not much further forward, but thought I ought to update you lovely ladies who have taken the time to reply to me.

 

The hospital I was at has referred me to where they do the reconstruction I want (DIEP flap) and the oncolpastic surgeon agreed to do it (with no mention of BMI). She and her team listened to me and why I had chosen this op and have been the first of the medical profession to treat me as an intelligent whole human being and not a disease.

 

However, the breast surgeons are refusing to do the double MX I want. They are prepared to take away up to half of the healthy breast if I have the huge lumpectomy they would do on the other side, so why wouldn't they agree to take the rest? They would throw away my tummy tissue (which poses no threat to me), but they won't throw away breast tissue which has the potential to be a threat in the future.

 

I'm meeting with the oncoplastic surgeon this afternoon to discuss where we go from here seeing as the breast surgeons seem to hold power over what I do with my body and can dictate how I should look and feel. She said she thinks they are acting unreasonably.

 

Has anyone else managed to get them to agree to a double MX? I have a large combined area of multi focal breast cancer.Only just managing to hang on to my sanity - biopsy 12/12/17, diagnosis 21/12/17, breach date 16/01/18 and the cancer is still inside me left to do it's own thing!

Member

Re: What do I want to say?

Good move to see the psychologist and the surgeon. People who haven't had this don't realise how much money you can spend trying to get much needed additional help such as counselling, extra physio, MLD (and some of course don't have that option).  I hope you feel more in control now and get the best outcome for you in the circumstances.  Best wishes. 

Member

Re: What do I want to say?

Thank you ms Merton. I've tried to keep off the internet for a few days as I was very close to making myself ill over this, hence me not having seen your reply.

 

I have paid for a private consultation with a breast cancer consultant surgeon and with a clinical psychologist to help me to get my head around this. These consultations have helped me to clarify my decisions about what I want from surgery and who I want to do the surgery.

 

The consultant also confirmed my concern over the tamoxifen. If I had started taking it and they offered me an operation in the next 3weeks I won't have be able to have the operation and would need to wait at least another 3 weeks after stopping it!

 

I am very lucky that the surgeon has agreed to see me next week, so I hope I am closer to getting this thing out of me.

 

I've not received any support, other than from you wonderful ladies on here, until I have engaged my psychologist. I was told it would be a minimum of a month to 3 months to receive support on the NHS! I knew I was getting too frayed around the edges and was starting to get anxiety and panic attacks, so as I have a little amount of money saved from the holiday we have had to cancel, I have used this to get me the support I need privately. I know it's important that my head is right if I am going to get through this.

 

Thank you again. I'm really grateful for a judgement free place to be able to rant and let off steam. I'm sure my husband would be grateful (if he knew) that it's saving him a bit of grief too!

 

Will post later next week (hopefully I won't need a rant) with an update of how I get on with the surgeon.

Member

Re: What do I want to say?

Hello lovely - sorry to hear you are so stressed out, understandably so. This part of the process is definitely the most distressing time.  Lack of control is a big issue.  You are correct that usually with multi-focal BC they prefer to do a mastectomy.  I had 3 lumps in a patch of DCIS and originally had a lumpectomy, but a few months later had to have a mastectomy when they discovered another DCIS patch (not a recurrence, just a patch they didn’t spot the first time, ahem).  I have had a DIEP reconstruction, which is the operation you want I think?  My plastic surgeon was very hot on the BMI issue.  If you saw me you probably would not describe me as fat but because i weigh 72 kg instead of 64 kg my BMI is about 28.  Even this really concerned him.  You have to understand that it is a hardcore operation and can take up to 10 hours.  Therefore they have to weigh up the risks of giving someone that much anaesthetic and they are v cautious.  Also bear in mind that DIEP is rarely one operation.  My “foob” is not the right shape and my breasts don’t match at all.  I have to go back to have the foob re-shaped and the other breast lifted and reduced to match. This is not a complaint but you need to know what you are letting yourself in for.  An implant recon is a much simpler operation, and i think i would have had that given a choice but they wouldn’t give me an implant because i also needed radio!  

Are they now saying you only need a lumpectomy? Obviously that’s a much easier operation to recover from so that is why they try to avoid mx where possible.  But if you have concerns, you can insist they explain to you why lumpectomy is being recommended and you can ask to record the consultation on your phone (you must get consent to make a recording) or for written advice so you can consider it carefully.  

Tamoxifen - don’t be scared of it.  You can start taking it before surgery (I did) but you need to stop at least a week, maybe two weeks, beforehand.  You can start taking it again once you are mobile after surgery.  You won’t know what side effects it has for you until you take it yourself. There are various medications that can be prescribed that lessen side effects such as hot flushes.  Also many people have success managing side effects using complementary therapies such as acupuncture and relaxation techniques (yoga, mindfulness, tai chi etc).  So even if you have some issues, it might be that with the right medical advice and other help it is in fact all manageable for you.  If you try taking it, then you have the option to stop if you decide that you can’t cope.  But if you don’t take it you’ll never know and you won’t have given yourself the chance to benefit from the protection it gives. 

I was very upset indeed when first diagnosed and completely lost it when told i had to have the mx but now really I feel fine again, even with mis-matching breasts, a huge tummy scar, mild Lymphoedema and a slightly scary prognosis.  You’re not self-pitying at all.  All your reactions are completely normal and commonplace for people going through this ****.  You will feel good again, I promise you, but it will take a little while.  I found counselling enormously helpful.  It’s also great to meet others at a support group.  Is there a cancer support centre such as The Haven or Maggies near you - if so I highly recommend checking it out.  

Hang in there.  We’re all here for you.  Sending you all best wishes.  

 

Member

Re: What do I want to say?

Just spotted my mistake - multi focal not multi centric!

Member

Re: What do I want to say?

The date they gave me is for a type of operation I don't want and couldn't live with. They have only given me information about what they want to do. From my research that's the one which is easiest for them, not necessarily the best for me. I really have trust problems with the whole way they have dealt with me this far. I feel like I am being punished with more delays for having questions and not being compliant in going with the labels they have given me and with the operation they want to do.

 

The word CANCER of any type and however early caught, leaves the diagnosed person (and family and friends) devastated. The fear that then sets in (despite trying to muster all your sanity, logic and strength) wears you down. You try to put on your brave face for everyone around you, whilst you are breaking inside. You know you are never going to feel safe again. Your whole view of life and the world changes forever (sometimes for the better). I'm sure it wasn't really necessary to write this paragraph as anyone reading this unfortunately, knows what it feels like.

 

I asked, on the times I went for further biopsies, I have rung on a couple of occasions in between and I asked last Wednesday if my HER2 result was back. Each time I was told it wasn't. They gave me the result on Friday. It was negative. I had been worrying that it must be positive, because of the time it took to come back. I asked for a copy of my reports. I took them home to read. The HER2 result was back at the end of December! I've had 3 weeks of extra worrying I could have been spared. 

 

The doctor only confirmed to me that I have multicentric breast cancer after I told I her what I had been reading. They recommend mastectomy in these cases. That isn't what they want to do. I'd tried to tell them all my concerns and fears after the op and living with the chance of reoccurrence. They don't listen and they did nothing to allay my fears. Do they treat us all like we are stupid automatons?

 

I know that, compared to some people's diagnosis on here, I have a lot to be grateful for. That makes me feel bad for feeling so self pitying. One thing this diagnosis has taught me so far though is that this is a time for each and everyone of us to be selfish. You need to think of number one if you are to get through this. I'm already changed from being the person who thinks of everyone else's feelings and needs first. Tempering what I say and being that yes person. Well, with the NHS at least.

 

I've got the tamoxifen and I daren't take it! I've read the posts on here about it to try to help, I've opened the packet, I've taken a tablet out and I can't take it. I had suffered increasingly horrendous menopause symptoms for the some years before I went on to HRT in February last year (I've obviously not been taking them since diagnosis). Almost immediately I started to get me back. I'm scared of losing me again, although I'm dissapearing now with this diagnosis (and lack of HRT) If my hormones have dropped because I'm not taking HRT  and then the tamoxifen lowers them further I'm going to be back to being a moody, itchy, sweaty, joint pain ridden, sleep deprived, mental wreck, only worse. I'm not far off that now! That's not even considering my worry about what it said about the op I want and not taking them.

 

The NHS really doesn't seem to have got their communication and information with patients right. There's another category they've placed me in. I'm no longer me. I'm a patient, a breast cancer, a body mass index, a patient number, a soon to be basket case, but never me an individual who needs to be properly informed (without the need to research for themselves) and treated holistically.

 

So sorry. My rants are getting longer. My love and thanks to anyone taking the trouble to read these let alone answer them. I just feel like I'm beginning to lose the plot!

 

 

 

 

Community Champion

Re: What do I want to say?

Sorry to hear you are finding this is such a struggle, Fairydust, & I can see how you’re disappointed about the BMI issue, but guidelines are applied, although this can feel so frustrating.
As you have a date for surgery, why not take it? Inevitably there will be a delay if you request a specific surgeon, as obviously you would have to wait for their availability.
I can see what you mean about the clotting risk & prospective surgery, it might be an idea to post in ‘ask our nurses’ or call the helpline here about it.
Wishing you well with it all.
ann x
Member

Re: What do I want to say?

Well, I've had my two appointments this week. First one with BC nurse. Lovely lady, but didn't tell me anything I hadn't learnt for myself. Idea was to go through the ops they wanted to do for me and show me pictures. They won't do the op and reconstruction I want. Just hit me around the head with the BMI argument; a 160 year old, regularly decried as flawed, calculation, which takes no consideration of your fitness levels. I'd like to see the surgeons follow me around the gym or during a class (sometimes both) and then do 120 lengths of the pool. If I had heart problems, diabetes, high blood pressure, smoked or drank I could understand their problem. 

 

On Tursday, I had received a date of 29th January, for an op that they were willing to do. I've told them what I want and who I want to do it (knowing that they wouldn't), so now I'm told if that's not acceptable there will be a few weeks' wait because of the referral. They already know I'm struggling with the delays. Just received the result of the last biopsy and it is an area which will have to come out, so it just confirms my decision to have a mastectomy. Only been told today that I'm HER2 negative. That has taken since the 12th December to come back. They didn't have an answer for me on Wednesday this week!

 

I feel like I'm being punished, for my BMI and wanting what I want and not what they want to do, with the delay.

 

They've now prescribed Tamoxifen for me. I've got the prescription, but daren't take it. It clearly refers to problems with reconstruction using your own tissue, where it can cause increased risk of the formation of blood clots in the small vessels of the tissue flap leading to complications! That's the reconstruction I want.  Again I wonder if they know what they are doing.

 

Really struggling to get through this week and don't know how I'm going to cope with more delays. They did tell me I could be referred to a Psychotherapist but it would take at least 3weeks.

 

Last week, when I went for a 3rd time for biopsy, I asked to speak to a BC nurse because I had questions, non was available to talk to me. The radiotherapist, bless her, did her very best as a go between, but it wasn't her job and it was wasting her time. It didn't help me to trust them with my care. I feel I've been diagnosed and just left to it by myself.

 

Gosh, this is a bit long!

 

Just on my own, hubby and son at work on nights, and feeling really rubbish. Can't tell you how far from my normal self I feel at the moment and don't know what to do with myself. I still have no date to get this out of me!

 

 

Community Champion

Re: What do I want to say?

Fairy Dust

 

What ann says is true, facing surgery is daunting especially if you have not had it before but this is the first stage on the road to your recovery xxx

Community Champion

Re: What do I want to say?

Oh, do have that piece of dark chocolate, Fairy, you deserve it & it is good to see that you’re doing something to feel more in control.
Facing surgery is daunting, but think of it as the first stage on the path to recovery.
ann x
Member

Re: What do I want to say?

Just an update. Got my next biopsy date - Tuesday 9th, so a just over a week of waiting again. Then a 1-1 with a nurse on the 17th and an appointment with the doctor on the 19th. 

 

If the biopsy is OK I will still have a choice between a lumpectomy, but because of size of area involved it would be done like a breast reduction, and a mastectomy. I'm still flip flopping between the two! Just hope I still get a choice after next Tuesday. 

 

As much as I want this out of me, I'm fretting about the mutilation I'm facing, whilst trying stop myself worrying until the op date arrives. I know I'll be in meltdown on the day whatever is involved.

 

Trying to do my own treatment at the moment, until the NHS actually does something. I've completely changed my diet - cut out dairy, more or less vegan - I'll have sprouted feathers and be chirping by the end of the month. Already lost 12 lbs since diagnosis, as apparently slimmer ladies get through this and survive better than us tubbies. Got the idea that I can starve it into submission by taking away its favourite stuff. Trouble is, it's also mine. At least I can still have the occasional piece of dark chocolate.

 

I sent for Jane Plant's book "Beat Cancer" and the one by Sophie Sabbage "The Cancer Whisperer" and trying to follow their advice, which includes taking control. You don't have to tell a control freak that twice. Luckily I've warned (and apologised in advance to) the doctors and nurses already.

 

Will let you know how I get on next week.

 

 

Community Champion

Re: What do I want to say?

Hey Fairydust, That quote about 'you don't know how strong you are, until you have no choice' has made me get a bit teary - its so true. People often come on here and make comments to people; you are so brave, so positive, I don't know how you do it...and generally we answer that we have just got through it because we have HAD to and had no choice (well, there was a choice, but that doesn't even bare thinking about!). As for the psychology....spot on lady! The process is about letting it out, whatever those feelings might be, you can't gradually work your way through it until the pain and fears are out in the open. Strength isn't just something that comes without tears and heartache, it is something that comes FROM that process often. (hence why counsellors always tell you that you might cry and get upset during the process of counselling!)

Community Champion

Re: What do I want to say?

That’s great Fairydust & enjoy that party!

ann x

Community Champion

Re: What do I want to say?

Fairy Dust

 

Wise words.  Well if you do forget them promise we will remind of them and that will get you through.

 

Good on you,  go party girl, see 2018 in style xxx

Community Champion

Re: What do I want to say?

Hope you manage to enjoy your party Fairy Dust -there is a place for ranting and raving ,weeping and wailing and positivity during this experience ,it's a bit of a roller coaster lots of ups and downs .It most definitely does help to talk to other people who understand and are going through it too -makes you feel far less alone .
Member

Re: What do I want to say?

Much calmer today. Been researching the psychology of dealing with breast cancer and have resolved to be strong mentally to help myself physiologically (see, learning big words as well!).

 

Apparently being able to have a rant and a cry now and then is good for us and not a sign of weakness.   It's keeping it all inside that does the damage. So thank you to this forum for giving us a safe and nurturing place to vent and thank you to all you lovely ladies for being their to listen and to impart your wisdom.

 

After Friday's experience I wasn't going to attend the new year's eve function we are booked in on (thought I would bring everyone down), but now I'm going to party!

 

I found two useful quotes this weekend:

 

You don't know how strong you are, until strong is the only choice you have.

 

And

 

If you can't change your situation, change the way you think about it.

 

Hope I can remember that one when I have my next meltdown!

 

Happy new year and my wishes for a very healthy 2018 for us all.

Community Champion

Re: What do I want to say?

That should have said ' soul ' not sound! I do think you should express your concerns to your bcn, this is what they are there for as support, advice and mediators. Everything you are saying here is going to eat away at you unless you let it out to the team. Let's be honest, sometimes things do go wrong, guideline times are missed and people don't get the quick treatment they deserve. Maybe showing your distress will make them move a little more quickly ....or at least explain to you more fully why the timescale?
Community Champion

Re: What do I want to say?

I'm in agreement with Ann and Helena....it's psychologically tough but they have to get it right. In an ideal world you'd be rushed along a day or so between each appointment and discussion, but sadly the reality is that there is usually a heavy burden on the system. This may mean a wait, but also means you won't be outside the boundary guidelines for treatment. It's hideous I know....Absolutely sound destroying....but as my surgeon said to me; bc is a slow progressing variety of C, a few weeks makes like difference to something that could have been there a very long time. I know it's not a great way to have yo view things right now, but be comforted a bit by that? Xx
Community Champion

Re: What do I want to say?

Hi Fairy
When going through this, timescales feel an like an age, Time takes on a different meaning somewhat.
Usually, treatment timescales follow current guidelines, although some, as ever, due to a number of reasons have a more difficult experience.
Although it doesn’t feel like it, from what I’ve read here, your experience is not unusual in respect of this & in any event, a few weeks here or there won’t make any difference.
But, I do remember feeling as you do & was terrified the mri results would delay surgery or change the treatment plan, but In the end it didn’t.
I had day surgery & I was so relieved when the day arrived!
ann x

Community Champion

Re: What do I want to say?

Fairy Dust

 

Mate it is perfectly normal and you will come through this, with us by your side. The one thing I am really grateful for was finding this forum and the ladies on here who got me through and made sense of what I was feeling.

 

Just you keep coming on here when you need to and we will always support you

 

Helena xxx

Member

Re: What do I want to say?

Thank you, Ann and Helena. I think I just needed to calm down. I think we all get so up tight before each appointment, it just falls/blasts out when we come out. After Wednesday's appointment I broke down and really that was with relief and I hadn't thought I was so bothered about that one.  Today was so much more important to me and for the first time I actually felt really angry when it didn't go to plan.

 

I am shocked (reading other people's stories on here as well) about the time scales involved, when it feel's you have a time bomb ticking away inside you waiting to do its worst at any time.

 

Thanks again for your words of experience (which I wish you didn't have really) and wisdom. Xxx

Community Champion

Re: What do I want to say?

Hi Fairy,
Sometimes there can be a difference of opinion, but the surgeon does need to be sure about what surgery is needed. It’s pants for you to go through this though & I certainly remember that feeling about wanting that thing out of me.
Sometimes further investigations are needed to get the treatment plan right. I had to have an mri which I found very stressful, but once it was done, I was glad it was.
They do know what they’re doing, but it’s horrible to be in the middle of this when anxiety is sky high.
It would be far worse if it turned out more surgery was needed because not all of the necessary investigations were done.
It will get sorted out.
Sending hugs
ann x
Community Champion

Re: What do I want to say?

Fairy Dust

 

Okay, I know that this is really frustrating and another wait for you but they are making absolutely sure, you would not want the surgeon to operate if he was not 100% happy would you? It could turn out to be exactly as the consultant radiologist says but if there is any element of doubt it is best to get it checked out. 

 

When I had my first set of results they could not definitely say that it was or was not bc and they did not want to send me away for another 3 years if they could not say with absolute certainty so I had to have another set of biopsies done, with the resultant further weeks wait, but they did say that the particular one they were doing would definitively say whether it was cancer or not.  As it turned out it was so thank goodness they persisted in getting a further biopsy done.

 

If they have made two more appointments for the middle of January then I would have thought you would be having your biopsy very soon, perhaps give your breast care nurse a call on Tuesday, ask her if she knows when it will be so that you can have some comfort and also tell her how you are feeling.  You could ask if she can explain more why there is this difference of opinion between your consultant and the radiologist.

 

I know it is really hard and distressing for you that you did not get the outcome you were expecting today,

 

Sending you hugs

 

Helena xxx

 

 

Member

Re: What do I want to say?

I have another rant coming on! ! 

 

Just got back from the hospital where I thought I was going to set out the plan of action, but I'm no further forward. 

 

Last Thursday I was told I needed another mammogram to check a 4th area of concern and that they needed the consultant radiologist to look at it before decision coukd be made about my surgery (which they said would be the middle of January) and treatment. On Wednesday she did and gave me my first good news, that she wasn't concerned about it and I didn't need a biopsy. 

 

Forward to today and the surgeon says they are concerned and I do need a biopsy.  What's changed since Wednesday? Do they know what they are doing? Can I trust them?  So no decisions today, because if they are right, I won't have a choice it will mean a mastectomy.

 

More waiting, agonising, worrying, not eating and sleeping.

 

I'm now waiting for another appointment for a biopsy I had geared myself up for on Wednesday (I cried with relief when I left, because I didn't have to have one) and they've made two more appointments in the middle of January to discuss the results and what we do next, but I won't get this thing cut out of me until "the end of January at the earliest"!!!!!

 

Two more appointments to talk about it. I'm fed up of talking about it. I want it out!!!!! No dates for an op. No real idea of what op I'm facing! I just wanted to scream at them. I want to scream now.

 

The NHS is a monster and no one seems able to tame it to make it work for the patients. This is mental torture.

 

Rant over.

Community Champion

Re: What do I want to say?

Yes , it's very hard telling people cos you have to deal with their reaction /upset as well as your own - I was very glad when I got to the bottom of the list of people I needed to tell. It does get easier -promise !!!
Member

Re: What do I want to say?

That sounds s good idea. This is my first post anywhere, as I'm usually a very private person. Telling people is the time I've come closest to breaking down and so far it's only been my son, brother and my two closest friends. I wouldn't have told them yet if I hadn't needed to cancel a couple of social get togethers with them over Christmas, as I haven't been full of the Christmas spirit!

Community Champion

Re: What do I want to say?

Hi Fairy Dust,

Glad to see Helena has got the thread sorted out.

Snap! my experience was pretty similar to yours I had a routine mammo on the day we were going to SAfrica for 3 weeks, I nearly didn’t go, but the OH said ‘go & get it out of the way,’ Went for the mammo, then forgot about it, only to find the ‘thick’ envelope recall on our return for an appointment the next day. 

Anyway, had the thing out in day surgery, then radiotherapy & now tamoxifen, then back to life as normal after a few months & very grateful I went for that mammo.

As I said below, it is a scary time, but it’s best to reframe it as ‘treatment’ not ‘poison’ Thankfully, treatment for bc has the best outcomes around, with many of us getting back to our lives as usual, once through it. 

You’re right, google is not necessarily helpful, the main bcc site here or Macmillan are good for info as it’s explained in a way that’s not scary. 

Do come & chat or vent as you need to.

ann x

Community Champion

Re: What do I want to say?

Fairy Dust

 

Thats great and an extra pair of ears is a really good idea.  Let us know how you get on tomorrow will be thinking about you

 

Helena xxx

Community Champion

Re: What do I want to say?

Fairy Dust -I text my manager and asked her if she could meet me in my car in the carpark - I couldn't face going into the office as I knew would cry telling her -I then text a couple of close colleagues and asked them to come and talk to me too- I then went home and cried and then worked at home most of the time til my op- found it too hard to keep up had pretence at work and didn't want the world and his wife knowing my business either - I only told those that needed to know .

Member

Re: What do I want to say?

Good advice, thank you and glad you've been able to get back to doing what you enjoy. Thanks for solving the mystery of the missing post as well, you're a star.

 

My appointment in the morning should give me some answers ( I've plenty of questions written down for the surgeon) taking my hubbie for a second pair of ears as mine didn't work too well the last time! I'm taking a note pad this time though.

 

The pants and your company will come in handy, but I suppose everyone who has gone through this before us is with us, because each treatment and outcome teaches us more about how to deal with this ***** disease ( and I honestly don't swear), so that those who follow can benefit. We're in this fight together.

 

Hugs and thanks to everyone who have responded to me, I really needed it today.

Community Champion

Re: What do I want to say?

Fairydust, You could have been me writing a year and a half ago, about some aspects of things. I pick up particularly the lack of even taking tablets for headaches, reading medical papers, not wanting 'poison' and the awful confused fear and questions. There's so much, and it comes and its you like a 20 tonne block dropping on you....it seems insurmountable, too much to cope with and so utterly terrifying. I personally had a fear of medication before bc, even paracetamol, the thought of an operation and GA and surgery.......I was in meltdown.

All I can say is this, take things one step at a time. Your questions and confusions will become clearer over time through the process as you learn more and hear more from the medical professionals and people like us on the forum, don't expect all the answers today and now. (DONT read medical papers!!! but then others have said that lol) Take each decision as it is necessary, don't plan hugely for those that might arise. Any decision you make will be your decision; ask any questions you need to of the oncologist and breast cancer nurse, and make the choices that are right for you. (I can recall one particular choice I made that I agnonised over) x

Community Champion

Re: What do I want to say?

Fiary Dust

 

Yay, its all back

 

Helena xx

Community Champion

Re: What do I want to say?

Fairy Dust

 

So the first thing is that you now do not google widely, this website and the macmillan ones are the best because there is the most up to date information on here.

 

Your lack of sleep is probably down to your anxiety levels being high and it is taking over your rational mind.

 

Honestly your team will have the best treatment plan in place for you once you see them tomorrow, one thing I held on to when I was diagnosed was that they told me it had been caught early, treatable and my long term outlook was good, it was hard to believe that at at the time, but I am now 15 months post diagnosis, op, radiotherapy and life has returned to normal, thanks in the main part to my wonderful bc team.  I also named my tumour Mr Blobby as it helped me to focus on the future and for me the team were going to get him out of my body, which they did successfully.

 

With regard to telling work, you only need to tell them what you want to and nothing more.  Do you have a direct line manager whom you could arrange to meet with next week and let them know,  Hopefully when you see them you will be able to share your treatment plan with them they will then be able to put things in place to support you going forward.

 

Your trip sounds absolutely fantastic and is a wonderful memory for you to hold on to going forward just think of all the vitamin D you will have stored up which is good with the winter we are having at the moment.  I know it does not feel like it at the moment, but one day soon you will be able to start to look forward to your future plans and it will give you something to look forward to once your treatment is completed.  To me it was being able to play lawn bowls, which is my passion, in April this year, and I ticked that box big style.

 

It is hard when you have all these appointments coming through at once but it is part of the process with your journey and you will get used to them, strangely enough when I finished active treatment in January this year, I felt a bit lost for a few days but oh then it was lovely not to have to plan everything round then after that.

 

One day at a time at the moment and you will get through my dear xxxx

Member

Re: What do I want to say?

I'm replying to Ladybowler, Jill, but this is a thank you to both of you for your quick replies. I needed them. Had been doing the Google thing all night (can't believe how many medical papers I've read through and am doing my best to avoid the scare mongerers preying on people clutching for help in desperate times). I know it's not the best thing to do,  but I feel like I'm cramming for a big exam tomorrow and, in this case, my life really does depend on getting the answers right. I'm not sleeping at the moment  and didn't shut my eyes until 5.30ish this morning, when I couldn't keep them open any longer. Luckily I'm  not at work until next week, so I can nap.  I don't know whether its the lack of HRT or the fear cos I'm getting some pretty scary dreams when I do sleep.

 

Work! That's another thing. I got my diagnosis after I had finished work for the Christmas break. I'm dreading having to tell someone else. Why is it so hard to say out loud? That's when I have the hardest time holding it together.

 

We had just come back from the most wonderful trip to Australia (visiting family) and New Zealand (on an adventure - for any Hobbit fans) walking, kayaking even whitewater rafting. I came back on a massive high and feeling so positive, with so many plans for our future adventures, including our retirement eventually, to 3 letters containing appointments for a call back following my routine mammogram. Back down to earth with a reality kick up the bum.

 

Oh for a magic fairy wand or actual fairy dust to make everything right for all of us.

Community Champion

Re: What do I want to say?

Hi Fairydust,
Glad you could come & rant here, I think we’ve all been where you are at some point, no matter what our diagnosis is, but it does pass.
Not a lot more to add than Jill & Helena have said.
Of course, it’s scary & none of us want to go through this, but I would also echo Helena’s point in trying not think of any treatment as ‘poison,’ but rather than treatment to get it dealt with & to avoid it coming back, so that we can get on with our lives. Thanks to this, the outcomes for bc treatment are some of the best out there.
You will get through it, we all do & sending hugs.
ann x
Community Champion

Re: What do I want to say?

Fairy Dust

 

Hello and welcome to the forum, which is a place no one really wants to be BUT as Jill said, you will get loads of help and support on here from the wonderful ladies who have gone and are going through exactly the same as you.

 

Come on here whenever you want and rant, rave, cry whatever, our hands are out there to hold you and get you through xxx

 

Try to just take each day at a time, there is a lot of information to take in at this point, especially when you are being asked to make decisions which will dictate your course of treatment.  One thing though please do not google generally on the internet, Dr Google will give you out of date misinformation which will only scare the pants of you, so it is a good idea to avoid it as each persons' diagnosis is unique to them.

 

When you see the consultant tomorrow ask them what they believe to be the best course of action for you in light of your diagnosis, after all they are the experts,   Once you have your treatment plan, honestly it does get easier because you know what is going to happen and when, somehow I think that helps you get through it all.

 

Oh injections, dont go there with them, I think I can match and exceed you with them, I could not even look when the nurse used to give me my flu jabs which was the tiniest of injections, but the team will get you through any that you have to have and will totally understand your fear.

 

I too hate taking tablets but in the last year I have had to learn to adapt as I have blood pressure ones to take and also Tamoxifen as my cancer was hormone receptor positive.  I do not look on it as a poison, more this little tablet is doing everything, as is the same with all your treatment, to ensure that the cancer does not come back so it is a small price to pay to take it every day.

 

Your team will work with you to answer all your questions and fears.  What I did was write down all my questions in a little book so that I did not forget anything for when I next saw my consultant.  I know sometimes it can be scary to write things down because in a way you are being forced to deal with what is going on but look on it as a good way of making sure that you get things out of your head and that you will not come away from the appointment having forgotten something, also it allows you to deal with things in bit sized chuncks, small steps at a time.

 

Sending you a pair of the tough pants we give ladies on here to help get them through times like this, they have very big pockets so that we can be there will you.

 

Let us know how you get on and sending you lots og hugs.

 

Helena xxx

 

 

tough pants.jpg

Community Champion

Re: What do I want to say?

Welcome Fairy Dust - feel free to rant here -you will always find someone who will listen and understand as we have all been there or are going through it too .The lack of control was a big issue for me too - but I'm afraid to some extent you have to let go and trust the medics .Hard I know .Cancer is cancer no matter what grade /size etc -it scares the living **** out of you .My GP pointed out it's not every day you are faced with your own mortality - no matter what the prognosis it's very very scary and pretty surreal .Come talk to us here there is lots of support and advice .Jill.