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July 2017

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Re: July 2017

Tatanya hope you are doing ok lovely and Carole i hope you are doing ok since your scans x
Kimi Angela hope you both are muddling along with life after bc well obviously you are as not heard from you in a while good sign im still lurking but promised myself i will check on less often and only drop in every now and then to see how everyone is xx
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Re: July 2017

Hope you are all well and happy valentines day 💖💖💖💖 onwards and upwards eh 😊
Member

Re: July 2017

Morning ladies.
Tatyana, Sorry about your news. It’s absolutely rubbish. I’m sure there will be weapons to fight/control it. I felt so sad when you said you’re not planning for the summer. I hope you do.
Can proton beam therapy be used in that area?
I hope you get some answers when you see the chemo nurse. Xxx
Member

Re: July 2017

Missa shes doing great 15 weeks now had her first sleep over last night it was lovely although im shattered since shes gone home showing my age haha!! Hope you get in ok with the rads i think tge tiredness is just tge knock on from surgery chemo etc just git to go with it oleased to hear about your hair too! Mine is bloody greyish mousey colour with a patch of white right at the front glad you are doing ok xx
Member

Re: July 2017

Hi all,

Sorry it's been a while since I've been online. Christmas was a busy period and now I've mostly got my energy back I've been keeping myself occupied. Started rads last Friday though so preparing myself for the inevitable crash.
Tatyana, I'm sorry to hear your news. You know we're all here if you need to get stuff off your chest. You too Carole, hopefully your MRI results are positive.
Glad to hear your hair is coming back FeelTheFear and Mishy! My bald patch is starting to get filled in and downstairs I look like a yeti, it's grown back black and it definitely wasn't like that before chemo!
Still loathe to dye my head hair (unfortunately it's grown back it's usual natural blonde colour) but I've been using lush henna dye instead. Obviously more of a tint than a dye but the cocoa butter in it makes my hair lovely and soft.
I didn't ask how many lymph nodes were involved and they didn't tell me. All I know is they took them all. Pre-chemo the cancerous area was 9cm! Shrunk to 1.2cm after chemo though.
Mishy, I know what you mean about the TN part. It plays on my mind a lot. I've vowed to make lifestyle changes to try and limit the chance of reoccurrence but there's obviously no guarantees. I guess we just have to get busy living and don't think about it too much. How is your granddaughter doing?
Member

Re: July 2017

Carole, my dear, you have expressed exactly, exactly what I feel. We thought we could see the light at the end of the tunnel, but it turns out it's the train coming towards us. A few days ago we were making plans for the summer. Now we've got to stop planning the future and find another way of living. Hopefully your next results will be more encouraging, but either way it's a horrible thing to go through. At the moment the slightest thing is making me burst into tears, I know it's early days and this will pass, but it's still **bleep**. At least we can hold each others hands.
Big hugs!
Member

Re: July 2017

Thanks Mishy
Member

Re: July 2017

Carole i hope all goes well for you with your MRI sending you some 💖 too in my thoughts x
Member

Re: July 2017

Tatyana sorry about your unfortunate results.  I know how you feel.  Since they told me I have a liver lesion I am becoming an emotional wreck.  Not confirmed as secondary yet.  I’m having MRI next Friday to diagnose, but don’t know if it’s likely to be anything else.  Oncologist did say it would be unlikely to grow with FEC T and was in a strange place for a met, but I don’t seem to get much luck with my diagnosis.

 

its hard to live with the thought of not getting over it.  😥I’m nearly a year in from diagnosis and had mentally thought it would take a year to get over.  Now I feel like I’m back to square one with diagnosis, worry and tests, only now it’s more serious.  xx

Member

Re: July 2017

Tatanya i think you are fab 💖 be kind to yourself you have a lot to take in atm sending my love to you 💖 pleased to hear you have a nearly pixie too xxx
Member

Re: July 2017

Hi Mishy, hi all, I'm ok considering, i.e.not great, bit of an emotional wreck just now. For those of you who don't know, my scan results on Wednesday showed that the inoperable mediastinal lymph nodes have actually grown since the previous scan (pre chemo), not much but enough that we are now looking at managing the cancer rather than curing it. I'm going to take a couple of weeks off then start on chemo tablets, capecitabine, supposedly less harsh than our old friens fec and t. Seeing the chemo nurse Tues to find out more. Boy have I got a lot of questions for her!
So, hubby and I are going through yet another adjustment process. I know it could be worse, but hey, I was hoping for better.
Looking on the bright side, hair loss is less likely with this one. Hooray! I can celebrate my nearly pixie. I opened the door to the neighbors yesterday with no wig or scarf on, and they didn't bat an eyelid, not even the three-year old,who can usually be relied on to tell it like it is!
Member

Re: July 2017

I think im wanting too much too soon Angela haha
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Re: July 2017

Your bloody right there i wish they had done that with me i would have preferred to know that it was affected nit by what the bloody size etc as it nakes you analyse things abit and can't do anything with the info!!
Loks like i hopefully will have a pixie in another 4 weeks hopefully albeit a short one the left side isn't as good as the right but i sleep on that side!! Its taking on a wavy appearance and very mousy grey, im pleased your sprouting new stuff as well and brows my lashes came before brows but everything seens a little thicker downstairs too unfortunately the lady shave is working overtime !!!!
Member

Re: July 2017

Hi Michelle.
Yes, big lump. I don’t do anything by halves me.
I’m not exactly knackered, but I don’t feel myself yet. A few weeks after chemo I was getting the spring back in my step but the rads have took me back a few steps.
I actually feel better today than I have in ages though so I’m hoping this is a turning point.
I think the breathlessness is probably just the cumulative effect of everything. We’ve been through the mill Michelle.
My hair is doing well. I bought that new soap you recommended. I’m now rocking a pineapple look.
I could of sworn I didn’t lose any hair but clearly I did. My Mam admitted the other day that whenever I showered she used to pop into the bathroom and scoop all of my hair up. She didn’t want to tell me as she thought I’d be upset. My body hair is coming back thick and fast. I’m getting bushy eyebrows and I barely had any before chemo. 🤔
Really hoping my lashes do the same. 🤞😀
My onco didn’t tell me how bad each node was. Probably better not to know. Knowledge is only power if you can do something about it. X



Member

Re: July 2017

Tatanya hope you are ok xx
Member

Re: July 2017

Angela that was a big lump i know mine was nearly 3cm with an Area of Dcis round it making it nearly four and my one affected node was 19mm i know my inc said hed reviewed planning ct for rads and was happy there was nothing troubling to see hows the fatigue affected you im bloody knackered all the time also a little breathless my gp has run bloods in case im anemic also doing chest x-ray incase rads have clipped my lung!!! I think its cumulative from the treatment myself its been a long road for us all when you think about it!!
Hows you hair doing also i was very impressed witb it when i saw you i now have my eyebrows back and lashes!
Member

Re: July 2017

Hi Michelle.
Great that your hair is growing back. It should be a cute pixie soon.
My lump was 5cm 😳 and the rest of the boob was covered in pre cancer.
I was told that if it wasn’t for having bc they wouldn’t of been at all concerned about what my ct showed. Apparently the lesions are tiny and don’t look like cancer. They could of been there from birth.
However, I smoked since I was 13 so my lungs are never going to be as good as non smokers.
I was told that my outcome wouldn’t be any different if I found out now or later if it had spread. So the way I look at it, I’d rather think it probably hasn’t than that it definitely has. I’m 43 and need to believe I’ve got a long life ahead.
We’re all different though, and I know some people are terrified because they aren’t offered scans.
And no Carole, not on the secondaries. Just google something like ‘lung lesions, Breast cancer ct’. You’ll find plenty of forums where people have discussed it.
Isn’t this just such a horrible bloody thing. Like kimi says, Just a bit of peace would be lovely. X
Member

Re: July 2017

Carole sorry about the CT scan outcome x hopefully you will get better news from the MRI
Angela good to hear from you i know what you mean about needing a break from BC i kind of feel like that ive never had any scans since my mammo and ultrasound the only scan i did have was the CT planning scan for rads which the onc had a quick look at i was 1 out of 5 node macrometes positive but it was big 19mm in size! The TN really plays on my mind at times but feeling like this is a normal reaction to all of this i may have to have a little time out too fir my mental wellbeing
Kimi its a horrible feeling when the anxiety of it not being gine creeps in every now and then surgery was such a long time ago now si we just have to have faith that we have had everything we could have had and like Angela says if any symptoms crop up then we can ask for scans oh and yes i was sick as a chip by i finished rads!! Hope you get your date soon , ooh and my hair is now the equivalent to a number 3 all over buzz cut still a dodgy colour though 😊
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Re: July 2017

Thanks Tatyana xx
Member

Re: July 2017

Thanks Angela. Gosh I don’t know how you can stand the fear of not knowing. I had a cyst on my liver on first CT and I had a nodule in my lung, which is why they CTed me again. I had 4/11 nodes cancerous.
I have always stayed well clear of the secondaries forums as too scared to go there or do you mean on the going through treatments forums?
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Re: July 2017

Carole, wishing you the best of luck and big hugs. Keep us posted!
Member

Re: July 2017

Hi Carole.
So sorry you didn’t get better news today. There are other things it could be. If you scour old posts on these forums you’ll find other people who have been in similar positions and it’s turned out to be fine.

I know how terrifying fear of the unknown is. I’ve refused my follow up ct as I don’t want to know. If I get any symptoms then I’ll ask for one.
Small liver lesions were found on my first ct and also liver cysts. Also, 6 our of 26 nodes involved so who knows.
You’re braver than me for going back for more. Sending you a very big hug.
Angela Xxx
Member

Re: July 2017

Hi all

 

been to see oncologist again today for CT results.  Not good news.  I have a lesion in my liver and they don’t know what it is but it has grown there in the last 6 months.  Oncologist says it is in an unusual place for a met as it’s right near the bile ducts, which also makes it very difficult to get at.  Also says he would be surprised if a cancer has grown during the aggressive chemo I’ve had.  Could be something else, don’t know yet.  Got to have MRI to diagnose.  Wish me luck xxx

Member

Re: July 2017

afternoon ladies. I hope everyone is doing well. I thought I’d pop in to say hello.
I feel like I’ve jumped ship lately, but do think about you all a lot.
I’ve been really busy trying to make a home since the builders finished and to be honest I think I needed to try and not think about cancer for a few weeks.
Mishy, your rads will be finished now. Congratulations. 🥂 I can imagine you were sick as a chip by the time you started the top ups.

I’m going to put some time aside tomorrow to read through what everyone’s been up to over the past few weeks.
I’m doing well. 5 weeks into tamoxifen now and apart from hot flushes and night sweats I don’t think I have any side effects yet. 🤞
Just waiting for my reconstruction appointment now. X
Shi Community Champion
Community Champion

Re: July 2017

Kimi lovely, big hug and 😘😘for you, we are all I am sure the same as you thinking is the chemo and rads working, please keep positive and keep faith and hope knowing you’ve done all you can 😘😘😘I agree without these threads and the shared known we get from each other we’d not have a clue about other treatments and things for se’s and what to discuss asvits differes from trust to trust and also the info you get given to read doesn’t cover se’s by a long way. Also the kindness. Love and support we get from each other is a very very big part of this journey and your not told about this at any appointments as a support network which I think everyone should be told about so they know it’s here if they feel they need it 💕💕💕✨✨✨✨shi xx
Member

Re: July 2017

My diagnosis was grade 3 invasive ductual carcinoma, 31mm, LVI positive, ER 7/8, PR positive, HER2/neu negative, 1/2 sentinel lymph nodes involved, 2mm deposit. I was diagnosed last March, two days after losing my Mum to asbestosis, which made it so hard & my emotional state so much worse. I had a lumpectomy, which later showed clear margins, followed by 6 x chemo treatments, 15 radiotherapy treatments to breast, collar bone & armpit & then 5 booster radiotherapy’s to breast at site of tumour. I have my next appt on 1st Feb for follow up & another to see surgeon on 26th Feb apparently to check operation site. I’m sure like the rest of us I am an emotional wreck some days, worry about it every day & worry what the future holds. My Consultant is a lovely lady, I tell her how scared & worried I am & she does her best to reassure me without any promises or guarantees. She has told me that radiotherapy is as effective as surgery to lymph nodes & that I shouldn’t need surgery to have them removed, but that worries me as so many ladies go on to have this done, but I’m obviously not keen to have it done unless it’s really necessary, another discussion to have at next appointment I guess. I’m taking Letrazole for the next 5 years & have to have Zolendronic acid infusions every 6 months for 3 years. I’m 58 in February. This group is amazing for support & whilst some of our diagnoses are similar our treatments have been so different but I’ve found it so useful & use the information when I see the Consultant to ask questions. Keep in touch with us & tell us how your treatment is going, the more information we all have helps us all to make sure we get the best treatment we can by asking questions. Hope we all get good news from our next appointments. Love to you all. Xxx
CK
Member

Re: July 2017

Thanks Mishy
I ve had lumpectomy before chemo and now have surgery to remove lymph nodes and clear margins so not sure what to expect. I have pre op on Weds so will know more.xx
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Re: July 2017

Ck i had lymph node op with lumpectomy before chemo and didn't have a drain, its different to you so im not much help just wanted to wish you good luck for it xx i would say the **bleep** is not big mine is above breast before crease of armpit and it was ok healing x
CK
Member

Re: July 2017

Thank you Tatyana
Feel better now after reading this! 😘😘
Member

Re: July 2017

CK, the drain is not as bad as it sounds! There's a tube fastened into place under your arm, it's quite a long tube and the other end goes into a sealed plastic bag or bottle. While it's in, you don't even feel it, the bottle just lies on the bed or hangs over the side. Only thing is, when you get up and move around you have to remember it's there so you don't accidentally drop it on the floor!
At my hospital they remove it before you go home, some hospitals will send you home with it still in if you need it, it all depends on how much fluid your body produces, which varies from one person to the next.
Removing the drain tube takes only a few seconds, it felt a bit strange but I can honestly say it didn't actually hurt! They then put a dressing on, which stays on for a couple of days until the little hole heals up.
I think it's one of those things that is worse thinking about it beforehand than the reality!
CK
Member

Re: July 2017

Thanks Tatyana
Thats very useful. I have pre op on Weds so will know more and then get prepared. Its rhe drain Im worried about. Not sure what its like but will just have to deal with it in the best way possible.x
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Re: July 2017

Hi I've posted a few times here but mostly browse a bit as I'm mainly on Macmillan forum. I've been very emotional since diagnosis in November 2016 and sometimes think I need to give my forum friends a break ! Thank you for your kind mention of your Facebook group but I don't actually have Facebook but thanks again for your answers x
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Re: July 2017

Hi CK, I had a mastectomy after chemo, so not quite the same as you, but I guess the general rules are the same! How long are you expecting to be in hospital? I'm guessing it will probably only be one night, so you don't need to take much stuff with you, but do remember to take any moisturizers etc that you are using to cope with chemo side effects, lip balm, etc. They will probably tell you to remove all makeup and nail varnish before the op, this is so the anaesthetist can see what colour you are! However, I'd lost all my hair due to chemo and asked if I could still keep my eyebrow pencil on, they were happy with that. Also they let me wear one of my sleep caps -- I don't know whether they removed it for the op, but anyway it was still on when I came round.

 

So, take a sleep cap, headscarf, wig, or whatever you are using if you've had hair loss. Take clothes that you can unbutton rather than things that you have to take off over your head, because it will be very difficult to get your arms up over your head for a few days! Take pyjamas that button up -- although they didn't actually let me wear mine, they insisted I wear a hospital gown for the first night.

 

You'll probably have a drain in when you wake up, at least for 24 hours, possibly more, depending on your hospital.  So a dressing gown with big pockets is a good idea, so that when you are walking around the ward, you can put the drain bottle and tubing in your pocket, it's convenient and relatively hygienic! Otherwise you could take a shopping back with longish straps so you can hang it on your shoulder.

 

Take your phone and make sure it's charged up beforehand as it may be difficult to reach a charging point if you're stuck in bed! You might want to take soft drinks and sweets to suck in case you get a dry mouth (but only after the op, of course, nil by mouth before!).

 

Basically, if there is anything that is making your life more comfortable with ongoing side effects from chemo, remember to take it with you! And remember to take a lot of patience and a sense of humour!

CK
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Re: July 2017

 

CK 

Member

Jan 10

Have any of you lovely ladies had surgery to take out lymph nodes and clear margins after chemo but not with masectomy as I have already had a lumpectomy before chemo?
I have just completed chemo treatment and have my op on 22nd January and was wondering if you have any tips to make it as easy and comfortable as possible. TIA.xx

Member

Re: July 2017

Yes, typicalme, the uncertainty really is one of the hardest parts, isn't it? Not least for our friends and family, who all want to know when things are back to normal. I wish! 😂
It's hard to be positive all the time, in fact I'd say it's impossible! For me, the best way to handle it is to just allow myself a good moan (quite often on
here!) and a good weep now and again, and then just get on with it! The ladies on here are such a support, always ready with sympathy or a giggle!
Member

Re: July 2017

Hi Typical Me

ive not seen your name in here before, so wonder if you are new to the group.  Just to let you know that I have a Facebook group of 44 lovely supportive ladies.  If you want to join us it is called Breast Cancer Care July 2017 Chemo Starters (but you don’t have to have started chemo then! )

Member

Re: July 2017

Thanks for your answer tatyana it's the uncertainty that is so hard. You sound so upbeat and positive I need to try harder x
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Re: July 2017

Hi typicalme!
This time around, i.e my second bout of cancer, I've not asked or been given any numbers, to be honest I don't really see the point as I know it won't be good and will only depress me! My 2002 diagnosis was ILC grade three, tumour 1.2cm, ER+, herceptin hadnt been invented back then, nodes were clear, I had lumpectomy plus rads and hormones. Then in May 2017 I was diagnosed with inflammatory BC, tumour approx 5cm, grade three IDC, triple negative. Chemo then Mx, now awaiting final decision on rads.
I don't know if this helps much, one thing I've learned here is that all our cases are different and you can't really judge by what happens to someone else. Apart from our different diagnoses, we're different ages, levels of fitness, genetics etc. I think we instinctively want "science" and hard statistics, but there are so many variables it doesn't really work like that. We just have to live with a massive dose of uncertainty!
Member

Re: July 2017

Thanks so much for taking the time to answer x
CK
Member

Re: July 2017

Have any of you lovely ladies had surgery to take out lymph nodes and clear margins after chemo but not with masectomy as I have already had a lumpectomy before chemo?
I have just completed chemo treatment and have my op on 22nd January and was wondering if you have any tips to make it as easy and comfortable as possible. TIA.xx
Member

Re: July 2017

Hi my diagnosis kept changing but after surgery (off the top of my head) I had one tumour of 3.2 grade 3 and another of 2.5 cm grade 2, both IDC, 4/11 lymph nodes macro mets and a few other pre cancerous bits and bobs in breast. ER+ 8/8 and PR-, HER-.
I’m 58. Next idea how much they put in the equation or what it means.
He said with just surgery 36% survive 10 years and following surgery, chemo and hormone therapy 62%.
Ask your oncologist next time you see them x
Member

Re: July 2017

Hi ladies hope you don't think me rude jumping in just wondered what yours and Carole original diagnosis were as there's no profiles on this site. I never asked figures but being aggressive grade three doubt they'd be so good. Many thanks. X

Member

Re: July 2017

Carole, I think 62% sounds excellent. Don't forget that they are talking 10 years, and after 10 years your chances go back to being pretty much the same as anyone else's.  And don't forget also that a certain proportion of people will be dead in 10 years' time anyway -- oops,that sounds a bit harsh!

 

I'm biased, because when I had my first cancer diagnosis in 2002, the number they gave me was, would you believe, 62%! At the time, we discussed chemo but decided against it, because the oncologist said it would be about 60-62% without chemo or 62-65% with, so it wasn't worth the side effects and other risks for only a marginal possible benefit.  So after the surgery and radio, I had zoladex for two years, tamoxifen for five years (concurrently) and then letrozole for five years (total 10 years).  I was in excellent health for 15 years before getting my second diagnosis, which is supposedly unrelated to the first and just bad luck (though nobody can positively rule out that it was the return of an old enemy in new clothing, so to speak!).

 

So what I want to say is, 62% is what I had, and it was good! Congrats! But it's tough that they didn't have the radiologist's report. It's so frustrating when you don't get all the information that you should get.

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Re: July 2017

Your group session sounds great. 👍🏻
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Re: July 2017

Hi Tatyana 

great that you have clear margins, but as you say, more waiting.  Hope they decide soon for you. 

 

The radiologist hadn’t done the report so oncologist couldn’t confirm anything.  He did have a look at my images and said it looks ok, but I still need to go back in a week or two.  So can’t celebrate yet.  He is arranging genetic testing and zolendronic acid infusions for me. I asked what my chances are for surviving and he said 62% for 10years, following surgery, chemo, radio and taking hormone therapy for 10years.  😕.  Not sure if that is good?  Sort of hoped it would be more 75-80%, but for now I’ll just be happy if they say I’m clear and don’t need more treatments. xx

Member

Re: July 2017

Carole, how did it go??!
Just seen my oncologist, path results from surgery showed clear margins, but now I have to wait for a CT scan. After that, we'll decide on rads. More waiting!!
Had a really good group session yesterday with a physio and a BCN to learn about exercise, lymphoedema etc. Best thing about it was meeting all the lovely ladies and comparing notes. The woman who I last saw on surgery day was there, looking absolutely great!
Member

Re: July 2017

Good luck Carole, it never gets easier, does it! 🍀🍀🤞🤞
Member

Re: July 2017

I’m off to see the oncologist in a minute for CT results.  Bloody terrified x

Member

Re: July 2017

Mishy, well done! Enjoy the good emotions, and just ride the bad ones -- we've all had to learn to do that a bit. It will take a while to get your head together, but at least you can say goodbye to daily hospital visits and all that goes with it!

Member

Re: July 2017

Yes ladies last rads today can't believe I've finally finished my treatment feeling all sorts of emotions today but know that i will never take my life for granted again
I think i need to mentally heal as well as physically what a bloody journey this has been 🖕you BC 😉