I know this is controversial but I am 18 months post early diagnosis and lumpectomy for er+ idcs and I have suffered one thing after another. My sinusitis is now beyond help, my tinnitus is raging, I have developed MCAS type issues reacting to everything, my connective tissues are disintegrating (I suffered complete leg numbness after just wobbling on my foot trying to balance during tai chi!), I have chronic non allergic rhinosinusitis, histamine intolerance, aches, pains so much! Almost every day, something new.
I know this has all been down to stopping oestrogel which I had used for over 30 years following a hysterectomy in my 30s. I declined lezeterol.
Has anyone restarted HRT following diagnosis and treatment and if so, did it make a positive difference? I’m desperate to go back on it but also scared stiff but I can’t live how I am currently for much longer. Thank you
I was on hrt for 12 years prior to diagnosis. For the firsr 7 months I was ok off it. However, since then (2+ years), I’ve never felt so poorly, despite stopping tamo after 18 months. Multiple joint & spinal pains, digestive issues, dental issues, some nasty pelvic floor issues, fatigue, night pain & sweating. I just can’t lead the life I did before. I really feel that my body needs systemic hrt! But this seemed to be a no-go area when I discussed it with gynaecologist, so I don’t really know where to go next.
I’m no medic but recommend an excellent book recommended to me by Candace Pert in her book molecules of emotion. The book ‘A womans best medicine for the menopause’, By Nancy Lonsdorf, Pub Contemporary Books. It uses Ayurveda Medicine and is simple to follow, without the need of HRT. i sailed through menopause following their guidance.
I’m dairy intolerant and on soya milk, and followed a mediterranean diet which also helped reduce my sinusitis attacks, plus negative side e going through cancer treatment I got the book via Alibris, which i found an easier company to deal with than Amazon. My book even came from the US where these authors are based.
I also take Calcium Magnesium which supports those who have gone through breast cancer , better than the Adcal that gets issued. [Cal mag needs taking on a ratio of 2:1 for correct absorption]
Feel free to get back in touch if you need more information, kind regards Moonsox xxx
Awe Vee, it’s awful isn’t it. Everyday something new, a new food intolerance, or food group, a new sinus infection, a new pain or niggle, a broken body and obliterated mind. Thank for replying I hope you find some comfort soon. Sending love and healing xx
Thank you Moonsox. I’m currently dairy, gluten, sugar free with low salicylate and oxalate intake to stop the histamine overload, I can’t exercise as I can twist or pull something doing nothing! All my connective tissues seem to have dried up along with my sinuses. I’ve seen every specialist available for every part of my body and there’s either nothing wrong or nothing they can do. I’m having blood tests and scans every five minutes through paranoia. All privately, I’ve spent a couple of grand in the last 18 months!
I will see if I can get hold of the books you mention but I fear my nervous system is just trapped in hyper sensory overload now. I’m reacting to foods, chemicals, the weather, exercise, very poor temperature control. I’m a complete mess.
So pleased you are on the mend though. Sending love and healing
Hi @amandrose you sound like you’re really having a rough time. I feel for you.
I wasn’t on hrt pre diagnosis as was only 38 and premenopausal. However, I have really struggled since diagnosis. I tried so many things non hormonal first but none of them helped me at all. I got to the point where I couldn’t cope anymore so have eventually managed to get prescribed hrt and it’s been life changing!
I actually want to live and function in life again. I know it’s controversial taking it but for me the quality of life was non existent without it and I couldn’t live like that. I would rather go out enjoying life than desperately sad, alone and depressed IF the cancer comes back.
It must be miserable dealing with everything you’re dealing with, with no end in sight. Obviously it’s your choice to make but I know for me it was definitely the right choice and it definitely wasn’t a choice I made lightly. I hope you can make a choice that feels comfortable and right for you.
I wonder what your diagnosis was originally? From what I understand the risk differs depending on where you start from. Mine was caught very early and cut out with good margins which puts me at low risk but it was very ER+ being 8 on a scale from 0-8. It was also invasive although not spread . I’m also only 18 months post diagnosis. This makes me high risk.
But I’m suffering loads of symptoms not typically talked about like multiple food intolerances which spike my histamine cells and cause worsening sinus and gut issues. Drying mucus membranes and connective tissues worsening my sinuses, tinnitus, joint pain and causing me to pull or tear muscles and ligaments from doing hardly anything. I also trapped nerves at the top of my spine 6 months ago and I’ve never experienced pain like it.
I’ve been to the GP countless times and they are just not sympathetic. They did re-prescribe HRT but I want a specialist to look at my personal risk, not generalise and they don’t seem to want to refer.
I’m glad you took a leap of faith and are enjoying life again. Sending you love and healing x
I was first diagnosed in July 2021 with IDC ER+ stage 2 grade 1 with no spread. They didn’t tell me where on the scale of ER+. I have a strong family history but so far no known genetic gene mutations. My second diagnosis in October 2024 was exactly the same except it was now stage 2 grade 3.
GP’s really are not sympathetic at all. I hope you can get a referral to the specialist soon and get some answers. Sending you love and healing vibes
Same here. I was on estrogen for 26 years after removal of cervix and ovaries in my late 30’s. The doctors just told me to stop taking it, but they didn’t help me do. Originally I quit cold turkey but I was sick and couldn’t get off the couch. I had all the symptoms…nausea, headaches, extreme fatigue, joint pain. I couldn’t function.i decided to go back on since I still had tablets and wean myself off slowly. Doing it that way helped, but I still wanted to feel better. Eventually I got off completely. Next was the side effects of Arimidex, the estrogen blocker. I felt horrible again. Originally I thought why do i need this if I don’t have ovaries but found out that estrogen can be produced by the adrenal gland and others I guess. Anyway, no, no doctor is going to prescribe estrogen, but, I have done something else that has helped. But, part of it is still a risk. I was told my cancer (stage 1) had a 4% chance of recurrance if I take the drug, if I don’t take it I have less than 8% of recurrance. Also, the long term side effects are awful. So, for me, I quit taking it. However, I also am cleaning up my body, making the environment inside my body less conducive for cancer and the side effects are that I feel great. I started by getting completely off sugar, including any kind of simple carbs like bread and pasta. I took my time and gave myself grace. Next I got off caffeine, then started eating lots more vegetables at every meal, including breakfast. For me, I’m not eating meat or dairy either. I take lots of supplements. I think they help but even if they don’t, they are clean and no bad side effects. I drink a protein shake for breakfast. I also heard about DHEA, but hr+ shouldn’t take this, but I still do. Do your own research and make the decision that’s best for you. I question myself every day, but I’m back to running and biking, and have the energy to exercise at 5 am, work all day, and walk/run with friends after work. I’m happier and feel more like myself. I’m risking recurrance I know, but I’d rather not live the rest of my life on the couch.
xx