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

Discuss it with your Specialist about risks if you do or don't and risks to your health. They might actually agree. They might be able to abate concerns. Kath x

@HJ444 I can totally understand your reluctance. There are many here who have struggled with this decision. The general consensus seems to be get as much information as you can then try to figure out what risks you consider reasonable and which you don't. I think many of the options we are given cater for a culture where we will do anything we can to try to prevent a recurrence or death. There are good reasons why well tried treatments are recommended. That's all very reasonable, but sometimes it feels like the baby is getting thrown out with the bathwater and we end up doing things that, while they may (or may not) extend our lives, make us miserable and remove some of the quality that we would like to have.Hormone therapy can have some down sides but unlike chemo the really bad stuff can take a while to present and it is possible to monitor side effects pretty closely. Once again, there are women here who have started hormone treatment then withdrawn from it as they have realised that they are in the smallish group who have really crappy reactions to it. As Kath said, you may be surprised at your team's response when you talk to them about it, particularly if you are in a high risk group. Ultimately all the decisions are yours to make, take the time to ask heaps of questions when you are talking to your specialists so what ever you decide to do is well informed. Marg xxx

I am 63 my diagnosis and treatment thus far echo your own.I too am nervous about hormone therapy- have been offered aromatase inhibitors for 5 years to prevent recurrence and prolia to counteract bone fractures.I have spoken to several ladies on line and am swinging around to trying it - the discussion is under this heading called Terrified of Hormone Therapy. I did not need chemo.Hope this helps - read the advice I was given by some wonderful women .I am also seeing my gp, surgeon before my next medical oncologist appointment . I had multiple dental extractions and implants last weekend as serious dental under hormone therapy risks osteonecrosis of the jaw.I have osteoporosis and have had 2 tia.I kind of wish I was offered tamoxifen as it builds bones and has a 40 year treatment history - you can move between drugs if their effects are too much.Aromatase inhibitors are said currently to be better protection and prolia is also said to contribute to this as well as build bone.Kath is right you must talk and question your medical team - the bcna kit is helpful in that regard with suggested questions and a diary to record answers - my memory is not great at the moment possibly because of the stress of the past few months.Also there is much support around if you reach out for it including on this site - the worst time for me was last week after radiotherapy ended - I needed chat to others with bc to know it would be ok and it can be gotten thru.I think the clue is talk,talk,talk - do not bottle it up and take one step at a time.There are many of us in the same boat - apparently 48 new diagnoses a day plus many more who have gotten through well beyond the 5 years and are living and enjoying life. XO

Hi HJ444 Quality of life with therapy options as we age perhaps are the most important decisions that we have to contend with. As i have only one first line therapy option for my hormone positve metastaic cancer treatment so am on Leterzole.with Asprin to counter clotting low dose blood pressure as AI can raise blood pressure and anti cholesterol drug as Cholesterole can elevate also.. to be proactive when starting therapy is most important so we increase our Vit D Calcium and complementary therapies Getting another specialist to review your history will hopefully reinforce the therapy options you have..All the best Bright

don't want to do chemo or hormone therapy

16 Replies

iserbrown
Member
8 years ago
@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
Romla
Member
8 years ago
Have 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.
primek
Member
8 years ago
The 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
melclarity
Member
8 years ago
My 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
Anonymous
8 years ago
I'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.
Harlee
Member
8 years ago

HJ444 said:

There doesn't seem to be anywhere that can give me the risk factor for NOT having hormone therapy.

Your oncologist should be able to give you the recurrence risk that applies to YOU with and without 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.
Brenda5
Member
8 years ago
Perhaps 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.
HJ444
Member
8 years ago
thanks 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???
Tennille
Member
8 years ago
I 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
fairydust
Member
8 years ago
@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.