Hi everyone - so good to see all the wonderful support on this site. I was diagnosed in April/May this year (following a recall on routine mammogram) with 9mm invasive lobular carcinoma left breast and had a lumpectomy with target wide local excision and sentinel lymph node biopsy on the 18th May. The margins were clear, with grade 2 (not to be confused with stage 2 they told me), 0/4 lymph nodes, ER 8, PR 8, HER2 negative and NPI 3.18. They had initially recommended me for the PRIMETIME trial but because I have bowel cancer this wasn't possible. After discussions with the Oncology Team they decided that because of the excellent results, I would not need to have either chemo or radiotherapy (but my decision which I agreed with) but to take Letrozole for the rest of my life and obviously as is normal with a breast cancer diagnosis yearly mammograms.
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Hello Mintygreen - how sad, to get breast cancer on top of what you’ve already got! Letrozole is apparently excellent for keeping the cancer from returning, and if the side effects are hard to take there are two other similar drugs that could be tried.
Many thanks Happyrosie. First two weeks on Letrozole were a bit weird but managing okay now. I have a weird side effect which the Oncologist said had been reported by a few people but it's not in the list of known side effects and that is I have loads of dreams. Some are not so good but most are just random subjects. And multiple dreams in one night sometimes too!
Hi Minty , i am on Anastrozole for 5 years which I think is similar to Letrozole . The side effects have not been too bad other than hot flushes and actually generally warmer than usual. I have always had mad weird dreams so nothing has changed there . I don’t know if lavender drops or something similar might help to relax you . Macmillan have put me on waiting list for aromatherapy to see if it helps with the hot flushes . I hope the side effects settle down once you have been on it a bit longer .
Best wishes xxxx
Many thanks. Wishing you all the best.
Just admitted to hospital , rigors , high temperature. Keeping me in tonight 🤨Maybe a chest infection. Always a drama . Take care , all the best xxx
Hi you sound really upbeat sorry to hear you have bowel cancer and have had breast cancer as well, it does not seem to phase you. That is great you do not need chemo or radiotherapy I had to take letrozole for five years after having tamoxifen for the other 5 years. I have just come off it and been discharged there is no guarantees the cancer won't come back but I was clear. Although you get side effects not as bad as the side effects of chemo. So pleased you are sounding so good and that the breast cancer was a grade 2, I had a grade 3 breast cancer and it had spread to my lymph nodes although it was not a big tumour only 2.5 cm. That is why they had put me on tamoxifen then letrozole after I had chemo and radiotherapy.Wishing you all the best in the future.
Thank you for your wishes. It's interesting that I have been told I will be on Letrozole for life whereas others only for a certain period of time.
I was told it would not do any more good for me personally as it would not be so effective as I had taken it for 5 years. Everyone is different and mine was adjuvant therapy to stop it coming back.
Since those of us with metastatic breast cancer have been told repeatedly that any new mets need to be analyzed to be sure that they are the same cancer, I'm wondering whether it is possible for bowel cancer to spread to a breast??
Best of wishes that yours continues to need only letrozole!
Hi Hazel green. I was reliably informed the cancers had nothing to do with each other but you never know. Weird thing there's no history of cancer in my family. Must have just been unlucky. Also have to take Adcal tablets as have osteoarthritis and the Letrozole can weaken your bones and they also get thinner as you get olde. I'll be 68 on the 27th November. And need bone density scan every year. On top of a total knee replacement in August 2020 with really bad reaction to the non-steroid anti-inflammatory drugs (only having half a large bowel due to the cancer) and also Gallbladder removal in 2017, I'm actually doing okay. I swim 2/3 times a week, sometimes more and do a chair based exercise once a week.
There is indeed much on your plate! I think it's terrific that you are so active. Judging from other participants on SHARE (the Health Unlocked website for those of us with metastatic breast cancer), it helps a great deal to maintain an exercise program. I'm eight years older than you, and, unfortunately, quit all the exercise routines I ever started.
It is surprising for you to develop two different cancers when there's no family history. In my case, I think I gave it to myself since I stayed on HRT (hormone replacement therapy) for 13 years. I wanted to stay young, foolish me. I also took birth control pills in my youth. Both HRT and birth control pills are now considered risk factors for breast cancer.
I insisted on taking tamoxifen after I was diagnosed, and that seemed to strengthen my bones. The oncologist recently refused to prescribe tamoxifen so I'm now taking letrozole (and a targeted drug) so I understand your concern about the weakening of your bones. From what I've read, calcium supplements, extra vitamin D, and exercise make up the best strategy to maintain bone strength so it seems you've got all the basics covered! Also, an annual bone density scan should be reassuring, if nothing else.
Congratulations on all you're doing to cope.
Hi Mintygreen, I had a similar op at the beginning of October, my cancer was picked up at my 4 yearly screening in Sept, so glad I went for it....I nearly didn't bother but it was my last one before 70 (I'm 68) so I thought I'd better go!I'm lucky, my ER cancer was tiny & removed with a good margin & clear lymph nodes. No chemo or radiotherapy but Letrozole for 5-10 years. I'm on the Femara brand, 21 days in & doing ok. The side effects I have are a mild hot flush a.m, usually on waking, a rotten taste in my mouth (yuck!) and my sleep pattern is disrupted...waking at 3am or thereabouts & not getting back to sleep.... it's not every night but exhausting when it happens! Thank God for audible books!
So glad you are doing well 😊
All the very best x
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