Having read through the above, I can't help but ask - where are you being treated? I can't believe that no doctor has mentioned tamoxifen to you, when it is one of the very positive things about being diagnosed with hormone positive BC. That's a terrible lack of information to you as such a crucial time. So glad you've found this site to help arm yourself with facts.
I've posted on here about my chemo experience, and am writing to you on day two, round three of four rounds of AC chemo. Now I'm not suggestiing anyone would want to run out and do this, but for me, it has honestly not been that bad. I have managed to work and play pretty much as normal through the whole thing (including that I was back at work on the Tuesday following my mastecctomy on the Friday and back in the ocean swimming the first day after my first round of chemo).
Like you the hair loss was something that really bothered me. I knew it would hit me harder emotionally than the mastectomy, which truly I don't care about. My boob was trying to kill me as far as I was concerned, Be gone. And I'm 47 and very active, and before I've even had reconstruction, I'm out there in the the world with my silicone fake boob and no one is any the wiser. Ditto hair. Well I am so not a scarf/turban kind of girl. And you know what, as open as I am with my family, friends, community, do I really want my clients and businesses I deal with to know what i'm going through? Not reeally. Do I want to walk the streets of Sydney out and about with my hubby and friends, and have people look at me with pity (and not because they're looking my outfit up and done thinking what was she thinking ;-). So I wear a wig, and again. It's not that bad. Even has its upside. Never a bad hair day regardless of the humidity :-). I look like I've been at the hairdresser every day. It only starts to feel a bit tight towards the end of an 8-9 hour day at work, but again, not really a biggy. And I'll just keep wearing it until my hair has grown long enough to be revealed to the world as a bitching pixie cut. I haven't had short hair for over a two decades...and you know what came as a total surprise to me when I got a buzz cut number 2 when it started falling out? It feels fantastic having short hair. Liberating. And I may never grow it long again through choice. (BTW baer in mind you have youth on your side when it comes to your hair growing back as you have much higer stores of collagen than older women, and I have read plenty of posts of girls who have regrown thicker lovelier hair than they used to have...and this has been the experience of two girl friends who've gone through BC).
Sooooooooooooooooooooo....if you feel like reading my experiences of chemo, which are eseentially pretty symptom free except for the hair loss, it might give you a different perspective on what it can be like. It does not affect all of us the same way.
All I know, is that in those moments when I worry about the what ifs of it coming back (depsite being node negative, having a mastecomy, chemo and being able to go onto hormone therapy which will give me the best boost at avoiding recurrence), I have the peace in my head and heart that I am/will be doing everything possible to give my body the best chance mediciene can give it right now to not have this sneak back into my life down the track. There can be no guarantees, for any of us, but I know should anything come back, I won't be bashing myself up that I didn't do absolutely everything to help my keep this not only at bay, but away.
I didn''t get to see an oncologist until 5 weeks after my surgery -- something that concerned me a lot, chemo didn't start until 6 weeks later -- again should happen within 2-3 weeks normally. It was in the lead up to christmas and nothing I could get done to rush it along any furthe because hospital was bursting at the seams. I met with a new and fabulous oncologisy yesterday who was outraged I'd had to wait so long to see an oncologist and start treatment (sacked my first for incompotence but that's a blog for another time).
So it's not great you're having to wait so long, but perhaps when you meet with your oncologist, who will go through all your results, speak with you about the different options you have for further treatment, and what each offers you to reduce your chance of recurrence, you might want to attend the meeting with an open mind, as you will have more information about your very personally tailored tumour (isn't it great we're all so unique ;-) ) and you might reconsider. For example, they will look things like your ki67 score, which is a gene that lets them know how fast your cancer was growing, therefore how aggressive it is. It's possible to have a very small low grade tumour, but have a high ki67 score, which makes them more prone to recommend chemo (mine was low hence they left it to me to decide). The form your cancer took in terms of form gives them clues as to more aggressive or not. Anyway, lots and lots of things they look at from your pathology report to come up with the very best options for you to beat this thing into submisson.
This is so personal for all of us, but all I can share with you is that chemo for me has seriously not been anywhere near as bad as I'd feared, not even remotely, and I am so glad that I have done it. I was in a "gray zone" where they left it to me to decide -- which was not easy -- but it's amazing how once I decided the treatment team were all so relieved and supportive that I had made the right decision. If I remember right it reduced my recurrence risk to 11% from 15-14%. Not a great reduction but I'll take whatever percentage reduction they throw me. I want to live a long and healthy life.
Good luck with your meeting next week and I hope you get lots of answers and information that mattter.
x
