I’ve recently had abnormal cells detected on a smear where all were previously clear.
I’m looking into what i can do to help myself and converns around being on tamoxifen have become apparent. I’ve been on and off it around a year and a half - now with the abnormal cells showing I think I need to come off it properly - there is a strong link between the pill and cervical changes (along with the exposure to certain hpv strains). It seems like a perfect storm - chemo suppressed my immune system, they stuck me on tamoxifen shortly thereafter which redirects available estrogen to that general region, hence the connection with endometrial cancer.
It makes sense, and to be honest, I’d be delighted to come off the tamoxifen anyway due to hideous side effects, but I was wondering whether anyone else had a similar experience and decided to go it alone.
I’m wondering whether I take a break, finish my family (as I’m still young) and then have a hysterectomy or something then I would have no cervix and no ovaries to cause me further issues.
That sounds like a plan. When our families are done, we have no need of the apparatus any more! They can and sometimes do, interfere with the rest of our lives, so, if that’s what you plan, then go for it. HRT can replace what your ovaries now produce, and medical research is forging ahead in leaps and bounds. Good luck!
Thanks. I appreciate you taking the time to reply. Such a dilemma. Hate this medical bs - one intervention seems to lead on to the next problem and they necer address the route cause!
Hi Ajt! What was your original diagnosis? With anything you must weigh risks versus rewards and whether the rewards of not taking tamoxifen outweighs the risk very much depends on that.
I take calcium d glucarate, high strength broccoli extract and DIM to detox the aromatase estrogen and am currently on zoladex. Have overhauled my lifestyle, run regularly and generally try and keep as healthy as possible.
The sideways step would be to go on an AI combined with the zoladex, but the side effects of that have an even worse profile than the tamoxifen (though it wouldn’t worsen abnormal cervical changes). I’ve struggled with the loss of libido or ability to get aroused and that would likely get worse on AIs, as would joint pain and bone density loss. I don’t think I’m prepared to put up with that. Tamoxifen side effects were a stretch anyway - when I first started it, it had such severe psychological side that I couldn’t function properly or take care of my son without help. Brand change helped, but still only just able to cope. I feel a million times better off it which happened when the abnormal cell stuff came up, but fear of recurrence is real and scary.
It feels like doing a deal with the devil - take this pill, it might help save your life but you’ll be miserable.
I think part of me wants to find others who couldn’t hack it anymore and decided to chuck the towel in (without it coming back to bite them).
That grade 3 is a tricky little s*(). The thing with grade 3’s is that sure there might not be any signs of spread in the lymph nodes or surrounding vascular structures, but they are way more likely to shed cells anyway which means distant metastasis is more likely with them. It could be just that it was undetected. No one can tell you what to do because endocrine therapy can be very tough and only you can decide whether it’s worth it to you. But there is risk with a grade 3 breast tumor and that can’t be sugar coated either. Perhaps looking into other avenues to feel better could be possible instead of just stopping altogether? Plus, normally tamoxifen is better tolerated than AI’s but not always. You may do better with an AI. I’m on one and really can’t tell anything anymore. I need to take zolodrenic acid now for bone strength but that’s not a big deal either.
Yeah, i hear you. Ive done sooooooo much alternative treatment to try and address the cancer stem cells that could be roaming. Im desperate to have another child too, which obviously i cant do in medical menopause. I feel like the doctors are just legal drug pushers most of the time, albeit most are well meaning, just ignorant. The studies aren’t there for the natural alternatives because the trials cost millions and are funded by the pharmaceuticals for profit from patent… which leaves you taking giant leaps of faith if that is your preferred way to tackle this. Unless you are extremely wealthy. The whole system just feels kind of corrupt and broken. And if they hadnt have massively irradiated me as a teenager i wouldn’t be in this situation, so i don’t really trust them or the studies.
Don’t blame you considering your past experiences. At any rate, just do what you think is best. No one can tell you what that is for you. I had a grade 3 and I’ve chosen AI’s. But I was done with children, too, so it’s a much easier decision for me.
I am a grade 3 too which dominates my thoughts a lot. I wondered if you were also on Abemaciclib alongside your AI by any chance? I realise there is only certain criteria which warrant it.
I don’t qualify for it since I didn’t have LVI or node involvement. I’ve chosen zolodrenic acid infusions instead since that also lowers the chances of getting bone mets. Plus, I think my bones are being affected by lack of estrogen. Did you have to have chemo, Bookie?
Yes I did have chemo and I had one positive lymph node out of 30 taken on node clearance- lvi was also ‘suspicious’ but not confirmed. So glad your nodes were clear etc. I also have zometa bone infusions.
With one positive lymph node and the grade of your tumor you would probably qualify for verzenio if you wanted it. It can be tough side effect wise though but the results are apparently fantastic.
