It’s not a question or a request for advice. I can’t discuss my treatment plan because there is still no plan. I’m not ‘newly diagnosed’ any more - my surgery was 6 weeks ago. Today i finally had an appointment with an oncologist, and I thought that meant I’d know what next - but I have no more information than i had before, and still effectively no plan. She told me my oncotype score - I told her I scored 18 and what that means in terms of what’s recommended or not. She told me again anyway. Twice.
My questions about tamoxifen and joint pain were waved away, ‘oh no, thats the Letrazole’. I mentioned what I’d read on this forum and she ignored me. All I know for now is that she’s not recommending chemo in view of the risk of it affecting my heart - but she wants me on Tamoxifen despite the risk of weight gain, thrombosis, etc. and she will refer me to another oncologist, because she doesn’t deal with the radiotherapy side of things.
This new oncologist will then send me to radiotherapy. In another couple of weeks. I said mildly that I felt I’d waited a long time and I’d been told six weeks… her response was worthy of a politician at a press-conference. ‘Well, we do have these targets, but circumstances being as they are we can’t always meet them… things get delayed, the department’s busy, oncologists go on holiday…’ She was sugary and condescending and didn’t listen to a word I said.
For this I waited an extra month so that she could tell me stuff I already knew and talk to me as though I’m stupid. And when I called the breast-care nurse to tell her the outcome of this meeting, guess what? there was no-one to take my call. (The BCU generally has been brilliant so I can’t complain about them, but hey, I’m still feeling very wound-up and i need to rant.) I told my family my news, such as it is, and they are all so delighted about me not having chemo that they ignored the fact that I’m not happy about the tamoxifen and I’m still waiting for yet another referral.
Yes, I am grateful that I don’t have to put up with all the ghastly side effects of chemotherapy. I should be happy. But I’m still stuck in limbo and feeling helpless. I can’t stop crying and I want to break things and shout at people. And this is before the hormonal mood-swings that are listed as a side effect!!
Sorry to hear that you had an upsetting time with the oncologist, sometimes professionals don’t very communicate well & it’s not helpful that you still feel a bit in limbo.
As I have said a lot on here, Lin, there are loads of us who have been fine on tamoxifen or at least find any side effects manageable. Weight gain is not inevitable & blood clots are rare.
When I knew tamox was in my treatment plan, I did find reading posts here heightened my anxiety about side effects, as understandably, those with problems will report it, not those who are ok on it. As it turned, out I’ve been on it for nearly a year now without problems.
The only way to find out how you’ll be is to try it, then deal with any issues if they arise.
You are perfectly entitled to feel the way you do & venting or having a rant is what the forum is for!
When I went through treatment, there was a different consultant who dealt with chemo and radiotherapy, so I think that’s normal.
I too was worried about the delay between surgery and treatment, but told by the oncologist that it needs to be done within 12 weeks, so try not to worry.
I’m on letrozole, so can’t help with that, but just to say that that too is very manageable. Don’t forget that there are a lot of people who are coping fine on hormone therapy and don’t post on here.
Ann, Sue, thanks for your replies. I realise you’re both talking a lot of good sense which, now that I’ve had a couple of hours’ sleep, I can process and take on board. Yesterday I was too hopping mad to do that.
I can’t know how these tablets are going to affect me until I’ve tried them for a while, so I took the first one this morning and I’ll monitor what happens. Given that I’ve been having menopausal symptoms anyway since my op, it may be hard to reach a definitive conclusion about what is normal for me and what is a side-effect, but I know I need to be as objective as I can.
I also know I need to meet with the new oncologist without letting the baggage from yesterday’s meeting impede me, and that’ll take some work! I still need to talk to the nurses at the BCU and if I can reach them today that will help.
As for doctor ‘I don’t know about that, I only only prescribe them’ - I am still seriously thinking about sending her some feedback on her approach to her patients. In a former life I was a medical training roleplayer, and as my hubby said on the way out of the hospital, she clear missed those training sessions on eempathy and communication skills!
Glad you’re feeling better, Lin.
Like you, I was having some menopausal symptoms as well & quite honestly, tamox has not made a lot of difference to me, my weight has remained stable & I don’t have any more aches or pains than I had before. Having one parent with osteoporosis, I like the fact that it is protective of bones in post menopausal women.
In fact, on my discharge appointment with the oncologist, we agreed I could stay on it for 10 years rather than change to aromatase inhibitors.
Good idea about the feedback if you can.
ann x