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KateA's avatar
KateA
Member
5 years ago

Any advice pls - local recurrence 2..5 years post mastectomy - advised to have radiation/tamoxifen

Hi everyone - in 2017 I had stage 2 HR positive/HET2 negative tumor removed in lumpectomy.  Before I started radiotherapy I decided to have bilateral mastectomy and hence no radiotherapy given.  I had reconstruction with implants and advised to take tamoxifen but I only took for a couple of months and stopped as I put on weight and thought I was low risk of recurrence due to mastectomy.  I have now had a local recurrence (pea size stage 2 tumor) removed last week in lumpectomy.  MDT meeting advised radiation and that I must take tamoxifen.  If I can't commit to compliancy with Tamox then I need to have chemotherapy.  I am a public patient and I have requested an appointment with a medical oncologist to discuss pros and cons of both.  Do any of you have any thoughts? Thanks Kate
  • As @kezmusc says - that truly sucks, @KateA - specially having had a bilateral mastectomy.   Yes, sadly that doesn't preclude a recurrence :(   I hope you are recovering well from the lumpectomy. xx  Have you had full body scans as well?

    As has been said - it is very important to get the info from the correct person - my surgeon said I'd be doing this that & the other - and it didn't happen, as the Onc had a much better idea of what was needed!!   Maybe record the meetings on your phone so you can go back over them later, if you need to.  It is easy to 'miss' some bits, as you are pondering one comment & they've already changed the subject!

    Have you gone thru menopause yet?  Some AIs are preferred for Pre Menopause women & others for Post Menopause.  You may be able to swap to a different one?  Not everyone gets all/any of the side effects.  

    Where abouts are you?  State/town?  You can add it to your profile & we may have members nearby who you can chat with, even catch up with (post covid) for support etc xxx

    I found these 'tick sheets' that can help formulate your questions when you see the onc/team next (or any other time ....)  Make sure you click on the links (not the pics, as they are only 1 page)   Add any bits that are relevant to your own situation xx
    https://onlinenetwork.bcna.org.au/discussion/21973/questions-to-ask-post-surgery-of-yourself-to-your-specialists-tick-sheets-self-assessment#latest

    In the mean time - Keep busy doing things you like, as you wait for all these meetings etc.  The waiting just sucks.

    Try & keep your sense of humour 'up there' - we have a really good 'funnies page' (called Friday Funnies, but we add them every day!!)  Just click on the link to add pics and posts ... 
    https://onlinenetwork.bcna.org.au/discussion/19116/friday-funnies#latest
    If you are into arts & crafts, we have a 'Creative Corner' 
    https://onlinenetwork.bcna.org.au/discussion/14979/creative-corner#latest
     and if you are into your garden, a Gardening post as well!! 
    https://onlinenetwork.bcna.org.au/discussion/comment/186078#Comment_186078

    All the best for your ongoing meetings & treatments xx  Whack up any query you may have either on this thread or a new thread if it is specific to a medication or condition ..... (more people will check it out. xx)

    take care, we're thinking of you xx
  • Hi @KateA
    Just keep in mind that some people have no or very few side effects on Tamoxifen, and that side effects can be managed by your oncologist and your GP.

    Please write down your questions and concerns to discuss with your doctors, and take a support person with you to take notes at your next appointments.

    All the best, L x
  • Dear @KateA

    As @kezmusc says, there’s no must about it. You can choose what treatment you will or won’t accept. As I am sure you know, there are no guarantees - you might have taken tamoxifen and still had a recurrence. But at very least you need to discuss your options with an oncologist - my lovely surgeon was very clear on where post-surgery responsibilities lay ..... but he also gave me some useful information on how to read stats. And to remember that even 1% of reduced risk makes a difference if you are in the 1%. I’m older and on Letrozole rather than tamoxifen. Increased weight is not good, but you may be able to take some proactive steps to counteract this. I’ve been much more active and kept my weight pretty constant. I’ve never had radiation but did have six months of chemo. It can be horrid but I had a pretty normal time, never nauseous, never fatigued, worked throughout. It’s very variable and no-one can really predict individual responses. Make a list of the things that most concern you and talk them through. Best wishes for whatever you decide. 
  • HI @KateA,

    That truly sucks.  I am sorry you have to go through this thing a second time.

    "Must"  is a very strong word.  Their job is to give you their medical opinion on the best recommended treatment for your circumstances. Not coerce you into commiting to compliancy...goodness me , some of these people have no idea do they?  That sounds quite threatening actually.  Not like they can come and watch you take the tablet and force you off to chemo if you don't.  
    You definitely need the oncology appointment.  Who's been advising so far?  Remember, the other specialties need to stay in their own lane.  Surgeons should not advise on whether you need chemo and vice versa.  It tends to happen a lot though.

    The only thing you "must do"  is gather all your information from the each specialist and decide what you feel is right for you lovely.

    All the best sweet xoxoxo