Evening..
Not sure if anyone able to advise.
In January after seeing consultant I was advised that I would be given pre menopausal hormone treatment after surgery etc. (52 and last period March 22 then mirena fitted)
Since had said surgery and thecresults returned have thrown a significant curve ball.
I have large lymph node involvement - so much that despite no clear margins further surgery which is needed is now pushed back to commence immediate Chemo.
However, it now seems that I will be put on Letrozole and bisphosphonates - which given that as this is Lobular BC - which spreads primarily to bones is alarming.
It feels as if given this change to treatment plan as there is a significant risk to this spread due to high lymph involvement but no one has advised me.
I have full trust in the system but it feels a little bit like it's on a need to know basis.
Over thinking/ over reacting this please tell me !!
I can’t advise but I had lobular tumour of 20cm removed and 21/27 lymph nodes were positive and suddenly accelerated chemo became part of the equation - then radio and now I have been made menopausal with monthly zoladex do that I can take Letrozole. I’ve had my first bisphosphonate infusion a few weeks ago and start Abemaciclib next week. They knew from the start that it was a big tumour and that lymph nodes were involved (I had a mastectomy and full clearance) and Letrozole was always the intended route - chemo and Abemaciclib were the surprise curve balls for me. It sounds like a similar thing going on for you - I was advised to have my coil removed when I was diagnosed so it might be worth checking about that - I had my last period between surgery and chemo so while I might have been pushed over the edge by chemo they can’t be sure so the plan is to take a break in two years to check if I’m properly menopausal and if so drop the zoladex.
I agree it is all a bit “need to know” - I’ve been told despite the fact they couldn’t see cancer elsewhere the high lymph node involvement makes them suspicious that there are tiny bits around the place that can’t be picked up by scans/tests so they are treating it from every angle they can - but it could equally not be there…. Or that’s what I think on a good day. As I see it the cancer has been cut out, poisoned, and burnt and is now being starved of oestrogen and finally its dna will be distorted to slow/stop it reproducing. It’s a long haul but I did want to take advantage of everything available to throw at it.
I don’t know if that helps but I do feel for you - it’s just awful when what you expected to happen (in my case surgery, radio, hormone therapy) expands. But as my oncologist said, she wouldn’t ask me to do it if she didn’t think it would give me the best chance and she felt I was fit and well enough to cope with so much accelerated treatment.
Take care - on this forum you are never alone in this journey.
Yes..was told to remove coil and it was the very 1st ever step of this ourney...
I am beginning to suspect that Lobular subtype REALLY is a problem
For most of us it continues to throw a curve ball !!
Hi, sorry that you're concerned by the changes to your plan, and I also think that's understandable. Maybe two things for you to think about. Firstly, it's not uncommon for treatment to be tweaked or changed as more tests are done and more info is clear. Secondly, I understand that many people take letrozole and bisphosphonates with ER positive treatment, to stop recurrence and bone spread.
I had a successful lumpectomy, no spread to nodes and I am on letrozole and Zometa as a follow up preventative treatment.
maybe it's worth noting down your questions and concerns so that you can ask about them at your next appointment, I found it helped me to be clear and remember when I prepared like this. Best wishes
Hi
I totally agree with you Evajean whatever I have to do to give me the best chance against reoccurrence I will take. I am on Letrozole for 10 years and Ibandronic acid for 3 years. I never took tablets before a cancer diagnosis but never forget to take these. Yes there are side effects but I want to carry on with my life so tolerate these . I guess I am lucky they are not too intrusive. I got a shock when I was given my results as wasn't expecting chemo in the plan. But that too gives you a better chance when lymph. node involvement is included . I had surgery, chemo x 6 and 15x radiotherapy so feel taking meds for however long is the easy bit. Hope you get on ok and remember all this is to give you the best chance of no reoccurrence so got to be worth it.
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Fortunately I didn’t need chemo, just radiotherapy but I know many people who have had chemo and have been cancer free for many years. I was on biophosphates for three years before cancer diagnosis as I have osteoporosis.So I was used to taking these tablets. The reassuring thing is that I had DXA scan in December and my bone density has increased slightly since my diagnosis in 2019, really pleased about that.
Hi there, I will try and locate the article about the increase in bone density by taking 5-10 prunes a day. Hubby had osteoporosis so he takes 5 a day. Although the study was done on women he takes anyway. I take 3 a day because I like them. I don’t have bone loss because took HRT and it really helped that for sure. Nice to take food as more enjoyable.
https://www.psu.edu/news/health-and-human-development/story/prunes-may-help-prevent-bone-loss-and-preserve-bone-strength/#:~:text=The%20findings%20indicate%20that%20prune,measurable%20loss%20of%20bone%20density.
Found the link.
Barbara
Barbara
Thanks Barbara, I eat dates but not prunes, will have to try those. Been getting the fresh dates which are my favourite.
I too took HRT for five years but developed fibroids so had to stop. Not keen on prunes or dates but eat lots of fresh fruit and veg and take supplemants. I am on a high dose of calcium and Vitamin D on prescription.
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