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PaulaN's avatar
PaulaN
Member
9 years ago

Reconstruction & Doctors Not Telling Everything

OK heres the update.    Saw the boob specialist Fri 3rd & had a mammogram & ultrasound. He told me that the seroma & node that's enlarged hasn't changed & maybe a little smaller. Then saw the plastic surgeon on Wednesday about a reconstruction. They won't do it because of my diabetes & my vascular problems & healing & because it's just too dangerous, they said that they didn't want to kill me. So that's stuffed up a couple of things we were thinking about. As far as the paraplegic issue goes they said that in my case the only way they could do a reconstruction, if they would, is to take muscle & tissue from my back around the shoulder blade & pull that around but that would really affect my mobility or they can leave the muscle & just take the tissue but that would probably affect mobility too. They also looked up the results from Friday & told us that the boob specialist is also watching a node in the right boob but he didn't tell us. We're not happy about that. Then we saw the GP on Friday & were talking about it so he's getting all the results & is going to go through everything with his nurse (who's brilliant) before we see them next week. Then we were talking about the medication (tamoxifan)  I've been put on & he told us that it's chemo.The boob specialist didn't tell us that either.  I'v also been told by alot of people that it was worse than IV chemo. I'm going to give it a go but if the side effects are as bad as aristozale & letrizole (I know they'e prbably spelt wrong lol) Im not going to stay on it. I can't be bed bound for 10 years.  I'm REALLY disappointed about the reconstruction & the other options we were thinking about & not being told about the node & chemo by the boob specialist because he's the one who should have told us that. So I guess we just have to wait & see what happens (I feel like a time bomb). Just another bloody thing to worry about. I hope this all makes sense because I haven't read it through LOL  Im sure I'v left out stuff they said, Im just not thinking all that straight atm.
  • Chemotherapy drugs are destructive to cancer cells (and others, unfortunately)
    Tamoxifen, while it is a cancer therapy, is not chemotherapy. 

    It's a common misconception that all drugs used in cancer treatment are chemotherapy. Tamoxifen is hormone therapy. 

    There are a number of different drugs which are commonly used to reduce the chances of recurrence or metastatic disease which work by either reducing the amount of hormones you produce or inhibiting your cancers access to them. That is a gross simplification.

    Don't get too worried about Tamoxifen. Yes, it has side effects, but they vary wildly. It does give you a full on bitch slap when it comes to menopause, but I figure if we all live long enough we will have to deal with that sooner or later anyway.

    Statistically, chemo may increase survival rates by 5-10% Once the chemo blitzes your cancer cells (hopefully) hormone therapies can add 10-20% to your survival rate.
  • This is what Iv been told: its an adjuvant chemotherapy drug and a type of hormone therapy as it attaches to oestrogen and is used instead of ongoing IV chemotherapy. There is no option with reconstruction, when I had the surgery before I had to have 2 anethetists (I know spelt wrong again) because I'm high risk. I just didn'[t expect the answer I got. They're worried bercause of my diabeties & healing, I have vascular disease & am on warfarin so they're worried about clotting if I go off warfarin & blood flow with the vascular disease & with other health issues they said it was just too dangerous & didnt want to kill me. As for other methods such as fat transfer, the breast surgeon thinks that the severe damage to my boob was caused by the radiation therapy & that surgerly wouldnt work.
    Paula


  • Thanks Kath. I always understood Tamoxifen as a hormone blocker. 
  • Tamoxifen is definitely not a chemotherapy. Those people are idiots who keep saying it. It is a hormone blocking therapy. ..so really it is a type of targeted therapy. It has been around for at least 30 years that I know of and has even been used in elderly women with no surgery as it slows the cancer growth rate down. 

    https://www.bcna.org.au/understanding-breast-cancer/treatment/hormone-therapy/

    It is also now on the pbs for women who don't even have cancer but are high risk and can be ordered by GPs.

    https://www.bcna.org.au/news/2016/10/tamoxifen-added-to-pbs-for-women-at-increased-risk-of-breast-cancer/

    Hopefully the nausea will settle soon, it might be just the changes to your body ..like pregnancy, the pill etc can impact.

    I am so sorry about the reconstruction news. But I truly believe it is worth another opinion with another public health surgeon.  Did they not even discuss fat transfer options to fill out the shape of your breast? 

    Kath x
  • Hi Paula sorry to hear of your predicament.  Tamoxifen! I'm on that and I  didn't have radiotherapy. Tamoxifen has side effects but I don’t suffer nausea. 
    I wish you well with treatment. 
    Take care 
  • Hi Melinda, it is tamoxifen I just get the spelling confused sometimes with my head being mush at times. My GP & sister-in-law who is a palliative care nurse have both told me that its a type of chemo. Im already getting some side effects, Im having trouble keeping food down even with the strong anti nausea drugs Im on (apparently you can only get it prescribed if you've had radio or chemo) it worked when I was on the other hormone blockers but doesnt seem to be working this time. I do find it helpful here but sometimes (only sometimes) hubby thinks I get too wrapped up in it & makes things a little worse, what he doesnt know wont hurt him LOL. I did have one lady kind of tell me to get over it & be grateful but I just ignored it even though I wanted to reply.
    Paula

  • @PaulaN what an ordeal!!! Im so sorry to hear about all of this!! There seems to be alot of complications, so I like that your GP and Nurse are going to have a look at everything for you! Now the Tamoxifan you mentioned, Im confused isnt that Tamoxifen? the hormone therapy drug? just wondering if thats different to what you mentioned, as Tamoxifen isn't Chemo. If there is anything we can all help with, in any way, by experiences and what we know, just keep asking...I find it so helpful here, reading others stories and conversations on all of it. Hugs Melinda xo