If you have any problems using our forum, please contact moderator@breastcancercare.org.uk or fill in our forum feedback form
Life after treatment
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 Pinkhair I can't help with your problem but I'm bumping you up because someone on here will have the information you need
Take care
Jan xxx
Sorry Pinkhair I don't know either but bumping! These are the things that worry me to and I am sure we are not alone.
Luv
Jane xx
Hi Pinkhair,
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.
Take care,
Jo, Facilitator
Hi Pinkhair,
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.
Good luck I hope you heal quickly. Jan xx
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+.
Thanks again for your help
Hi Pinkhair,
My case-history reads exactly as yours does except that you had a couple more nodes affected. Like you I`d 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,
you`ve been through a major ordeal. I`ve 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 :-You`ll just know.
Not very helpful to a hypochondriac but so far all`s 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 don`t 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 lollypop,
It's 2 years this week since my mastectomy and I had the 1st mammo on my good breast 3 weeks ago. Haven't had the results yet.
I do hope your biopsy is clear. How have you been feeling generally?
Jan xx
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.
hi pink hair i did get the reults yesterday, the cancer have come back in the skin i am now waiting for ct scan, its so worrying
Hi Lollypop, so sorry about your recent results, hopefully they can get you some more treatment , and the cancer has not spread anywhere else.
Jean.x
Hi Lollypop,
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.
Hugs Jan x
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
Hi lollypop,
I'm so pleased for you. Now you can look forward to a new year where you are free of treatments and free of cancer. Thanks for coming back to share your news. I'm sure I speak for the others when I say it cheers us all a wee bit when one of us gets good news.
Jan xx
hi janB,
JUST STRESSING A BIT AGAIN I HAD THREE MORE HERCEPTIN LEFT TO GO BUT MY MUGA SCAN I HAD WAS SHOWING SIGHS THE HERCEPTIN IS AFFECTING MY HEAR , SO NOW THEY HAVE STOPPED IT STARTING TO PANICK NOW. X
Hi lollypop,
It must be very scary having your treatment stopped. I do know other ladies who had to take Herceptin breaks because of heart problems but managed to complete their treatment eventually. The heart is very good at recovering. Have they said what will happen next? If you're not sure you should ask your BCN. Uncertainty always makes the panic worse. Probably makes it unlikely you'll finish in January which must be disappointing.
Big hug tonight. xx Jan
hi jan,
i will see my oncoligist on monday i dont think i am going to finish the last three, also because i had a reccurance in sept which was cells left from oringinal dx they said,and herceptin is surpoose to prevent that, but i have been looing at the american site, and quite alot of ibc ladys were still having herceptin after recurrance, along with other drugs, but this is what i am going to point out to her on monday. anyway thankyou for repling how are you and hope you are doing well x
Hi Lollypop
I'm doing just fine. Had my bone scan yesterday and it went smoothly. No hint from the medical staff that they'd spotted something amiss.
OK, they don't actually tell you anything but in my experience their expressions can say quite a lot. I know I can't be sure until I get the results from the consultant but I slept well last night.
Good for you, checking out the latest information. We need to trust our medical teams but that doesn't mean we don't ask informed questions.
Hope you can relax and enjoy the rest of your weekend.
Jan xx
Hi hope u dont mind me jumping on this thread - I am post treatment - I finished chemo in June and Rads in August, no more treament as am TN. I had my first appointment in Aug with consultant and all was fine he said then this week had first appt with onc - and I have my first yearly mamo on 6 Dec. Since chemo fin I lost my nails, 3 months after, i was gutted, but now they hve regrown but I have severe pain in my joints of hands and feet and in my left arm just with the arm bends at the elbow but the top of the arm if u see what i mean; I am so scared, has it come back? Life after treatment took some getting used to it was like "flying the nest" all over again as i was so well monitored and looked after and i got used to arranging my life around hopst appts, felt a bit alone with support stayed. I am just so scard of this pain - plus in my breast where had lumpectomy I have a few tender spots which itch, is it coming back there aswell?
Trying to stay calm - I had blood tests to rule out any inflam joint problems and that was clear. But Weds at onc appt I had blood test plus xray for which I wait results and next Thurs i am to have a full body scan........
Other thing is recently I started having bad hot flushes they say its not menopausal cos too young (but Im 44 so could be...) but onc does not think so. I cant have any hormone treatment if it was cos though TN they dont want to give me any hormones in case i did get a recurrance within next 5 years that was not TN as this one was. My doctor has now given me Beta Blockers--------- never even heard of these but he said they will slow my heart rate lower my blood pressure which is ok cos mine is a good level so now harm to me. sounds too scary, has anyone else had these?
Sorry to ramble on, appreciate any comments, advice. lots of love Shar xxx
Hi there Silvershar,
I'm 2 years further down the line than you and I could have written your post about myself this time last year, including all the feeling of panic. Everything you've described sounds familiar and sharing with the ladies on this site really helped me then.
One thing at a time. It's quite normal to have lots of aches and pains for some time afterwards. Many of us do, chemo is a cocktail of poisons after all. If you had Tax, it's notorious for causing pain in hands and feet. I had terrible pain and swelling in all my joints and it always seemed worse when the weather was cold. Mine gradually faded this year, 2years after chemo finished. That doesn't mean you don't need to rule out other things so you're right to get your Docs to check.
I had a mastectomy and I still get itching and sometimes pain in the area of my scar. My surgeon explained that although the healing on the surface is really quick the wound is very deep inside the body and it takes a long time for nerves and muscles to settle. I had rads after my surgery and my skin is still changing. It's very hard, isn't it, to know what's normal when it keeps changing. I pestered my BCN for ages looking at new lumps and red patches but she was very patient. Don't be afraid to pick up the phone and ask. It only takes a few minutes and can save you a lot of worry.
Hot flushes............ bain of my life. Can't remember when I last had a good night's sleep. Did your periods stop when you had chemo? Have they started again? If you're not having periods you're almost certainly in menopause. My BCN told me that for women over 40 chemo almost always pushes them into menopause. I was 47 when I had chemo. My periods, that had been regular, stopped after the first session and never returned.
I'm sure there will be others along who can help reassure you. I hope your scans come back clear and you can get some peace.
Jan xx
Jan thank you so much for your reply, I totally appreciate it xxx
Yes, my chemo was TAxotere and I got on better on that than FEC, i had pain with tax but not too bad, do u think i am getting the pain now months later?
I have the scan tomorrow and hope i get the xray and blood test results too. I was tested for menopause but came back neg. My periods lasted 3 out of 6 chemo's hot flushes getting better but not stopped,just be glad to get results of scan and mammo next week, so maybe the tender spots are the after effects of rads... my op, a lumpectomy ws in January this year...
Thanks again Jan, I felt better seeing your reply xxxx
Hi, Silvershar,
Did you get your blood results today and how did the scan go?
Like all of us I can only speak from my own experience, but there are common things that lots of people report. Pain in hands and feet after the event is one of them. Most people had some pain at the time, I certainly did, but it seemed to be worse in the year after my treatment. Our bodies, including our immune systems have a lot of recovering to do.
My hot flushes come in phases. They're bad for about 3-4 months then ease a bit only to come back worse than before. The nigfht sweats never go, which means I never get a good night's sleep. Like you, my Doc won't risk prescribing hormone treatments even though my BC was hormone -ve so I take sleeping tablets. I try to keep them down to 2 or 3 a week otherwise they make me depressed. So far I haven't found a better solution.
Good luck with the results.
Jan xx
hi jan,
hope you are well i have got another worry three more like bumps have appeared again under my skin on rec side, got to see my onc next thurs, it just bloody never ends i am hoping its nothing sinister.
best wishes to you and happy new year x