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HJ444's avatar
HJ444
Member
8 years ago

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

  • Hi @HJ444, I'd just like to add as others have stated you could always try the hormone therapy and see how you go. Also there are bone density clinics for exercise which can help too - here's the link to the  ABC Catalyst program about it.
    http://www.abc.net.au/catalyst/stories/4459555.htm
    Wishing you all the best with your treatment decisions. Xx Cath
  • 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 
  • 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
  • @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
  • 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