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What do I want to say?

50 REPLIES
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