Forum Discussion
HJ444
9 years agoMember
don't want to do chemo or hormone therapy
I was diagnosed with Infiltrating Lobular Carcinoma (ILC) Grade 2. Oestrogen positive 80% & progesterone positive 50%, HER2 ILC negative. I had a lumpectomy and had 1 lymph node removed. Margins and lymph node were clear, I am currently having radiation but I feel that the risks for hormone therapy are too great. I have a history of blood clots and I have osteoporosis and osteoarthritis. I am 74 years old and already have considerable joint pain every day. is there anyone out there who has been diagnosed with what I have and not had chemo or hormone therapy
16 Replies
- iserbrownMember@Romla Good on you! @melclarity has been on the roller coaster and struggled to get off but as she will tell you now she is in a good place. Glad to see you have been able to work through some of the emotions and willing to give it a go! For me the % on offer was only 3% so I took the treatment that is meant to close down the hormones as that is our (me and my specialists) biggest concern. Take care and good luck with treatment xx
- RomlaMemberHave read many of the views on this site and elsewhere and I have swung around to Melinda's view - and will give it a go and do what I can to get thru side effects in the hope they settle. Have also received lots of useful tips about how to help deal with side effects from exercise to natural therapies.I had to have the surgical margin of my lumpectomy widened due to microstases ( hopefully spelt correctly) which ended up clear and had same on one sentinel node.None of this was known until after the pathology results came in from surgery.As I understand it's a mopping up process for any tiny bits missed and improves my chances of non recurrence by 15%.Chemo was not considered necessary by my team. I guess for me the decider was so many women have gotten thru to the 5 year mark on hormone therapy and are living normal happy lives and also those currently on hormone therapy seem to be still enjoying their lives admittedly with occasional flat spots but they pick themselves up and get on with it - hope I can too.
- primekMemberThe program Predict...breaks down the difference of chemo and hormone treatment. For me I know as I am es+ and her2+ ..the hormone treatment at the 5 and 1 year mark was the biggest difference, even more so than herceptin.
To look at predict. ..a calculator tool,
You need all pathology, tumor size, node results etc.
The lumpectomy with radio vs mastectomy sit much the same with results so predict is more about the other treatments.
http://www.predict.nhs.uk/predict_v2.0.html
The other thing good to know is your Ki67 result
http://www.breastcancer.org/symptoms/diagnosis/rate_grade
Sometines known or appear on path as MIB1
https://en.m.wikipedia.org/wiki/Ki-67_(protein)
This rate is often what determines treatment and recurrence risks.
Your oncologist or breast surgeon would use these tools and could explain it more thoroughly than looking yourself or even your bc nurse. Kath x - melclarityMemberMy Oncologist said for me it gives me a couple of % more protection, taking an Aromatase Inhibitor. I figure I'll do what's recommended and have over the past 6 years. Im 19 months post chemo and now I'm finding alot of pain I had is settling down. I'd give it a go to be honest, if you feel it's playing havoc you can always stop. xx
- AnonymousNot applicableI've given up Tamoxifen and feel better. Still you have to live with the what ifs if cancer comes back. I'm ok with the risk. It's a personal choice and I did decide to take it for a year. I've filled out a hospital admission form, with side effects from cancer treatment. These impact on my life quite a lot. 3 years ago I wouldn't have had anything to write in the health issues section. It's good to be alive, but the side effects aren't great.
- HarleeMember
Your oncologist should be able to give you the recurrence risk that applies to YOU with and without hormone therapy.HJ444 said:There doesn't seem to be anywhere that can give me the risk factor for NOT having hormone therapy.
It varies for everyone as your age, other illnesses and the specific pathology of your tumour all influence what your individual risk is. There are so many possibilities so be very careful with information from the internet or from what someone else says was their risk.
Do you have a Breastcare nurse who can help you? Or perhaps your GP can assist with explaining what the different specialists are recommending?
With your pre-exisiting conditions if your oncologist is still recommending hormone therapy I would be inclined to give it a try at least. Remember that lots of side effects are listed but that doesn't mean that you will necessarily get any of them. Some people have no side effects (I wish I was one of those people!!) some people have side effects that can be managed (this is me) and other others have to look for different treatment options. You won't know unless you try.
Good luck. - Brenda5MemberPerhaps with your age, rather than the heavy duty infused chemo you could qualify for just the chemo pill? My dad has metastic cancer and although at 76 he did have the infused chemo, it didn't really help him and he is now on the chemo pill and his results have been astounding with his blood count from 48 down to 19. Talk to your specialists. Get a Macgrath nurse to ask questions too if you aren't getting the answers you need. I am 54 and on Tamoxifen and while a bit rough with side effects at first, I am not too bad after 18mths now. I take 50mg of aspirin to help keep clots at bay as I got one behind my eye but it is resolving itself with time. The secret to good bone health and joint pain is exercise. Just walk it all off. Yep it hurts when you first get going and you will be worn out when you are finished but believe me, the pain will go away through exercise.
- HJ444Memberthanks everyone for your input. The problem I have is that I get different figures from different specialists, so its really difficult to get a true understanding of the risks involved. everywhere I have looked only gives figures for people who have had either chemo or hormone therapy. There doesn't seem to be anywhere that can give me the risk factor for NOT having hormone therapy. There weren't any responses from people who didn't have hormone therapy, are there any???
- TennilleMemberI have been on Tamoxifen, Aromasin and now Letrozole. All 3 had ups and downs but at the end of the day every side effect can be managed and you will need to weigh up the benefits and risks. Do what is right for you but dont be guided by fear. You have got this
- fairydustMember@HJ444 whatever decision you make be sure. I think the specialist will help in your decision. I like statistics and the pros and cons to do a procedure. Some things are straight forward others not. You are 74 years young . If you dont want to do chemo etc then what are the consequences? In my case there was no other choice but to have chemo if I chose to live.