Pinkrose - well done for getting though it & thanks for your sympathy re the dentist :o)
Janipi -thanks for checking out the liver question…I know I was probably being paranoid and thankfully the symptoms are starting to lessen!!
Well done to all who’ve ended their chemo course and best wishes to everyone else still on the treadmill…
Heather xxx
Thank you ladies for all your replies.
Flapjack - I agree with Triphazard - the injections aren’t too bad. I inject myself in my leg (no, I’m not skinny and have got fat, but can’t face doing it into my tummy for some reason?) and I have found that the leg pains start when I’ve injected myself - but I haven’t had any infections (so far). The second dose of TAX wasn’t as bad as the first. Doing them yourself or getting OH to do it, was better for me than waiting for the district nurse to come out.
My dilema now is radio or no radio. Oncologist said it’s up to me, surgeon who did my recon said I don’t need it and it may damage my implant. I wish the oncologist had said I don’t need it. Going to try to arrange a meeting with her to clarify as I saw her registrar last time. Although it’s nice to be classed as a low-risk case for once!
Rachel.
Hi Pinkrose
re: your radio or not dilemma…I was in the same situation.
I’ve had double MX with immediate recon with implants (Oct 2010). As I’m only 2/13 nodes, I was considered ‘borderline’ for rads (but TN grade3)…there was talk of a trial (SUPREMO) but after getting some advice off the forum (especially from Gingerbud) and speaking to Rads Dr, I’ve decided to go for a course of rads. There is a risk that the implant will be damaged and have to be replaced at a later date but even my surgeon agrees the clinical benefits outweigh the aesthetic complications.
I’m going to sign the rads consent form this coming Monday so will post if any other negative consequences are explained.
I know we have to assess our personal circumstances invidually but I just thought it might help you by knowing my DX and decision
Heather xxx
Heather - that’s really helpful. My BCN has suggested I speak to the consultant oncologist not her registrar to talk through with me the benefits and my concerns. I’m really in a quandry especially as the letter from my surgeon said categorically he saw no need for radiotherapy. My BCN says the ‘cancer comes first not the aesthetic look of your breast’ - and she’s right.
I had one node involvement and am TN2. I’ve declined taking part in the supremo trial.
Now I have a CT scan on Thursday and radiotherapy planning booked as they are presuming I’m going ahead in the radiotherapy department!!
Thanks for your reply Heather.
Confused Rachelxx
Rachel - I had mx and anc, and so was ‘unlikely’ to have needed rads… but the actual clear margins between the tumour and my chest wall was only 0.9mm - and that was when I discovered that they want a minimum of 2mm clear, to avoid rads. I think you need to get a look at your path report, so that you can see for yourself if rads look necessary - if your margins were greater than 2mm, then maybe the surgeon has a point… otherwise, maybe rads would be the way to go. It is unfair when they leave the decision to us, without fully explaining the pros and cons.
When I was first referred to oncology, the multi-disciplinary team meeting that they’d had about my case stated categorically that rads were not necessary… it was only going through the path report with my oncologist that flagged up that, in fact, they were very necessary. Always worth double checking…
xx
Pinkrose - glad I could be of help :o)
Triphazard99 - I’m really confused about the clear margins thing (I also had Mx with anc)…when I saw the Rad dr about whether to have rads, I asked her about my margins and she said that she thought margins only came into it when you have a lumpectomy, not a Mx…however you have been told what your margins were…
I’m a bit concerned that no-one has offered me the info on margins (not my surgeon nor Onc). Did you have to know what to ask for or did they just tell you anyway?
Heather :o)
xxx
Thank you so much for this extra insight triphazard. At the mdt meeting it was agreed thar I didn’t need rads. So I will check this out when I see the oncologist. I didn’t know this info
heather - seems unfair that people are not aware of such info and the details of their path report are not explained fully doesn’t it! If I knew I was going to have rads I wouldn’t have had an immediate recon or be put forward to have it surely??? Am confused !!
Pinkrose - yes I agree but for me prior to surgery my treatment plan didn’t include rads. I had had a biopsy from a lymph which showed no cells. However, it was only after surgery and anc that affected lymphs were found so the ‘goalposts’ were moved. I think it may have been good to have the prospect of lymph involvement discussed more fully prior to Mx surgery.
Still, I think my surgeon did an amazing job and even if we had had the ‘lymph involvement’ discussion I can’t honestly say I still wouldn’t have opted for immediate recon with implants as I wasn’t so keen on recon being done from other parts of my body or further surgery to do so. I’m holding out for the hope that rads won’t affect my implant too much(over-optimistically perhaps?!)
Saying that again, every decision is a personal one(plus we have different gradings: mine 3, yours 2) and I don’t know what your surgeon discussed with you about your surgical options and any prospect of future rads. All I would add is though that if he’s adamant you don’t need rads, how can he be so sure??. (especially when your Onc has introduced the prospect) … because as we know with this disease the professionals tend to be quite reserved with giving definitive judgements, they tend to work more on weighing up pros and cons & percentages.
I hope I haven’t left you more confused than before ;o)
Heather xxx
Thanks for your reply Heather, don’t worry you haven’t left me even more confused. Your comments are very helpful. I have an appointment arranged with the Consultant Oncologist next week to get more information so have delayed my CT scan appointment from tomorrow until later next week. The oncologist’s secretray did say it was unusual that the surgeon would actually say that he ‘recommended’ no radiotherapy.
Hoping Consultant will say yeah or nay next week!
Thanks again Heather
RAchelx
Heather, I asked my oncologist if I could have a copy of my path report, and she printed it off instantly and went through it with me. The margins were on there - and clearly stated that they had only achieved 0.9mm. However, this may be down to where my tumour was located - it was high up on the cleavage side, so not far from the chest wall anyhow. It may well be that if your lump was central, and smallish, it may have had massively clear margins.
Still - I would def. ask if you could see your path report - just for your peace of mind. And I would question the theory of clear margins not being relevant with mx. I know that very often the margins are plenty big enough - which is why it is not all that usual to need rads post mx, but it ‘can’ happen - and if you’re worried, you deserve to find out all you can.
Sophie xx
hi ladies. Well my chemo has been delayed by a week due to very sore fingers and nails, saw the onc on Monday and he is also reducing the next tax by 20%. Going to enjoy food tasting good over the next weeks thats for sure! Big hugs to everyone having tax this week, we are getting there Ness xxx
Nessp, I actually enjoyed my little TAX delay and have just had my reduced dose. Hands were back to normal but nails are still sore. Just tired day 3 but no shooting pains yet. Hope you enjoy feeling normal get your taste back for a bit. When food is cooking I am smelling it is delicious but the taste is always disappointing. I had a curry at the weekend on my extended TAX break and it was lovely !!! Enjoy.
Pinkrose - glad my experiences have been of help to you. It will be really interesting to see what your Onc says when you see him and also what you decide to do. Please post your decision :o)
Triphazard99 - thanks for your advice. I will def try and find out about the margins. It was a bit odd that they were never mentioned when all the Mx results were given to me…maybe they were irrelevant due to position of my tumour like you say. I’m back at hospital on Monday armed with my list of questions, lol!!
Heather xx
on the run up to tax 4, final chemo on thurs 14th - am impatient for it to come but worn out and want se to stop.
how are you all doing? have you got very very bumpy finger nails?
love to you all and thank you for being there
claire xxx
Claire - my finger nails are bumpy, also bending and splitting at the ends.
Good luck with Tax 4. I only had 3, but still getting tired quickly and lack energy three and a half weeks later, so feel for you that you need another dose.
Stella xx
I painted my nails black and my nails went soft and split so I stopped using the polish and continued to use nail hardner and my nails are now returning to normal, growing nicely still bumpy had my last tax 2.5 weeks ago.
Morning girls. Tax 4 last Friday. Last one.
Two fingernails disgusting!!! Coming off and yukky yellow stuff coming from underneath them. Sorry if tmi. I’m sure some mire if them are black under the nail varnish. Can’t quite bring myself to look.
Praying hard for other SEs to be less this time. Surgery in 4-6 weeks.
Polly xx
I am still having weekly tax, and have another 6 to go. have already had 12 and am feeling heavy legged and washed out. Need some encouragement now ladies.
x sarah
Sorry I have no experience of Weekly Tax, but I imagine each dose is lower but it all adds up in the end and that SEs build up as you go through , so commiserations that you still have six to go. I had 3 FEC and 3 Tax. I have the heavy legged and washed out feeling too.
You have done two thirds of them now, but I know the thought of more is not appealing when you are suffering.
So big hugs and try to enjoy the sunshine a little. It will pass and all be behind you.
Stella xx
sarah - thinking of you and sending hug to help
claire