Hi everyone, this is the first time I have been on this forum, though I have read many, many comments and stories… Hellow to you all and hope you can help…
I was diagnosed with IBC in Feb 2010, I have had chemo (TEC and taxotere), mastectomy with lymph nodes(9 and 8 were cancerous), radiotherapy which ended in Sept, on taxotere now.
I was told during radiotherapy that there was a good chance that the cancer would return (as the chemo didn’t work completely - both kinds) - it might not, but chances were high.
I wasn’t give much info on what to look for if it did return, other than a few circles appearing on surface of skin at mastectomy scar and I can find much information on-line on what to look out for… as it is the healing from mastectomy and radiotherapy i.e. shooting pains, itching and skin hot are all symptoms of the original cance - I’ve been told it is all fine and not to worry, but I would rather know what to look out for - it would help me relax or get checked if necessary… Does anyone know what I should be looking for?
Thanks
Sorry you’ve not had many replies to your question. Could I suggest that you give the helpline here a ring and have a chat with one of the breast care nurses who may be able to help.
The helpline is open Mon-Fri 9-5 and Sat 9-2, free calls 0808 800 6000.
Sorry we’ve been a bit slow to respond. The IBC group is quite small and we’ve been quiet for a while. That’s usually good news as it tends to mean none of us are having any new problems.
You probably already know that skin mets are quite common with IBC and some of the ladies who post here do have them. I’ve been very lucky so far not to have any, but like all of us, I do check regularly for signs of any changes. From what the others have said they can look different in individual cases and the usual advice is to have any changes looked at by your BCN or any of your medical team you have regular contact with.
I know it’s hard while you’re still healing. Everything looks different and it keeps changing. It will settle eventually and you’ll get to know what is normal for you. In most cases there is a rash of some kind, raised dots which may or may not itch and may or may not bleed. If you notice anything like that I’m sure your BCN will be happy to check it and set your mind at rest. Better a few false alarms than worrying needlessly. I pestered the life out of mine at first but she was very patient.
Thanks for your responses, and thank you JanB, I saw my BCN this week about “wee spots” I had ?!?!! she said everything looked normal for the stage I am at, and the heat in the skin is still due to Radiotherapy and it will be the end of Jan before it actually stops working on the wound!
Thankfully she is a lovely lady and I feel comforted each time I speak to her - so I will do as you suggest and hopefully if anything new pops up, we will catch it…
I just want to add that my original post I said I’m on taxotere now!! it is actually tamoxifan!! - Hormone blocker - and I am desperately trying to lose weight to get rid of the oestrogen that is stored in my existing body fat as I am ER+ and PR+.
Hi Pinkhair,
My case-history reads exactly as yours does except that you had a couple more nodes affected. Like you Id read how frequently IBC returned and was very scared particularly a few weeks after all the treatment finished and I still felt crappy, I think with hindsight that rads need just as much recovery as chemo, they absolutely floored me and affected my digestion as well so be kind to yourself, youve been through a major ordeal. Ive asked this question to my surgeon,onc,and BCN:-is IBC more difficult to treat and altogether more serious than other BCs, they all said:- No, just harder to diagnose initially. A year after my MX, I told my onc that we were moving to Spain and what symptoms were serious enough to warrant flying home between check-ups, his answer was :-Youll just know.
Not very helpful to a hypochondriac but so far alls well with me. About 6 weeks ago I paid for an ultra sound & tumour-marker blood tests and they were better than all clear, maybe I will get poorly again one day but at the moment,I could jump over the moon, I hope you will too eventually, take care and dont get impatient waiting to feel your old self again, love Mags xx P.S. I`m a bit chubby too, I joined a Zumba dance class last week, maybe that will help, just 6 more years of Tamoxifen which as the Onc pointed out,contain no calories!
Hi Pinkhair,
I too put weight on after starting tamoxifen (calories or no calories!!) I have been controling it with an intermitant diet it is on the genesis web site.
Jane xx
Hallo Pinkhair - It is a strange and scary sensation when you’re out of the structure of regular treatment, isn’t it?
Being about 10 months ahead of you, my one piece of advice would be to try and relax into this second chance and live life without the fear of what “might be” ('cos it also “might not”)overshadowing it…
You will most likely be on regular checkups with your oncologist who knows what to look for plus - as the others have said - if anything is worrying you, you must feel free to call you BCN. In my experience, they are there to help exactly with the uncertainties you are experiencing. Mine have brought forward oncology appointments, jumped in to refer me to lymphodeama nurses etc. They are a lifeline! So try not to get too focussed on looking for things but if you notice something “odd”, THEN get it followed up.
It sounds like you have no further spread of the disease? How wonderful is that! Enjoy your new life to the full!
hi my name is lorraine i am new to the site, i have has ibc last sept i was diganosed had all my treatment masceptomy reconstruction, and herceptin finishes in jan. but on monday went for my mamogram results on my good breast but i had two red spots that appeared i showed my surgeon he talk a biopsy i will know tomorow the results. has anybody has the same.
hi pink hair i have been very positive, and been feeling alot better until now, i am going on holiday in six weeks to egypt hope so anyway, how about you.
hi jan thankyou for replying to me i do hope your mamo is clear for you, mine was i got the reults mon just gone but i have two red spots on my reconstuction breast my sugeon done a biopsy i will know tomorow.
So sorry to hear your bad news. It won’t be much consolation but a few of the other IBC ladies have skin mets and they’ll be able to give you lots of advice. Some have been living with them for a long time.
I opted not to have a reconstruction immediately because I was worried about skin mets. My skin was affected before I had my mastectomy and I didn’t want to risk it coming back. Now I don’t know if I’ll ever bother. I don’t find wearing a prosthesis as much of a problem as I thought I would.
hi janB
my scan is on the 11th october it cant come quick enough, i have mentioned about having the silicone taken out and my breast nurse said it will be a option so will will see.
hi janb hope you are well just like to share my good nrws with you , i see my oncolgist last tues , and i dont need no further treatment and my herceptin will be finishing in jan has planned they sid that the nodules that appeared were from the orignal dx back last sept, and now i am cancer free at present, i am so relieved. x