I have Grade 3 invasive ductal carcinoma. It is ER positive but not PR positive. I have perineural invasion (not quite sure what this means for me other than the potential for it to spread). The Stage of my cancer is apparently quite early (Stage 2). The lump was 2.5 cm (which I discovered). I am 76 and I had a lumpectomy (right breast) on the 15th January. No lymph node involvement. I subsequently had an Oncotype DX test which came back positive (at value 29) for risk of future recurrence so I was offered chemotherapy, followed by Letrozole, Radiotherapy and Ribociclib.
Now this is the strange bit, I am not afraid of the cancer, but I am afraid of what the treatments are likely to do to my body, to my quality of life. The fear I feel is for the treatments, not for the cancer. I am just getting on with my life and not wishing to think about my cancer anymore. Is this normal behaviour and does anyone else feel like this? I have not taken up chemotherapy (with oncologistâs blessing because of my caring duties) but I am feeling the same now about Letrozole, Ribociclib and even Radiotherapy although I am seeing oncologist for Radiotherapy this coming Friday. I expect I will go ahead with Radiotherapy but not with anything else.
Why do I feel so unafraid of my cancer diagnosis. Why am I not throwing absolutely everything at preventing recurrence since I am assuming from what is being offered that I am at some risk?
Is there anyone else on this forum who feels ânothingâ? Who wants to do nothing other than to just carry on with their lives as though nothing has changed? This is my second cancer, so perhaps having survived my first cancer with surgery alone, I think it will be the same with my breast cancer, but I am quite shocked that I have never felt threatened by my breast cancer diagnosis, not from the start, whereas I do feel threatened by the treatments for the breast cancer, if that makes any sense. Is this normal behaviour?
I completely understand, I think its because when you have breast cancer, you dont actually âfeelâ unwell (I think unless youre at the later end of life stage), however when you hear the word chemotherapy, you expect your life to be extremely hard (which it is for some people more than others) and when youâre told about the other treatments and look into them, you read all about the side effects. So for me knowing i had to go through treatment affecting my life was hard especially as I have a 6 year old and I didnt want her to go through the trauma of seeing me being a âcancer patientâ, however at the same time, for me having her also made me want to fight it so she isnât without a mother at such a young age. If i was older and she was grown up and if I was given a choice, Iâm not sure what i would do. It is possible to start treatment and see how you feel, you may find it doesnt really affect you at all and if it does then you can decide to stop?
Thank you for your kind response. By nature I am quite anxious, but I still find it hard to explain why I fear the treatments more than the disease. It should be the other way around. First time round I was petrified of my cancer diagnosis. This time I felt ânothingâ when breast cancer was first confirmed, only concerned about what my medical team wanted to do about it.
I wasnât afraid of surgery since I knew that would be immediately effective and hopefully curative, but the adjuvant therapies go on for so long and may or may not make a difference.
In many ways, I am fortunate to have a team who is so prepared to treat me at 76 and to throw absolutely everything at my cancer. They must have thought I was able to benefit and was worth NHS, UK funding. I think they also thought that I was physically well enough and free to withstand treatment. This is not always the case and with my caring duties, it is not easy to be away from home. (Hubby has early stage vascular dementia and it can be very difficult).
I am sure you are right, it is because of my age and not being confident that I can âsafelyâ put my body through treatments without serious harm which is making me avoid making a decision. I am also concerned that the quality of my life would be worse than it is at the moment if I start hormone treatment. I would rather live 3-5 good years, than 10 or more years of misery.
I can understand a younger person choosing treatments that would prolong their lives since they would have far more to lose.
Of course my family want me to take everything on offer and it is very difficult to speak to them about my personal preferences.
I am minded to accepting Radiotherapy since a lumpectomy without radiotherapy would not be a complete treatment for breast conserving surgery. I may try the Ribociclib (cancer growth inhibitor) if I am allowed to try this without Letrozole, but Letrozole with a heart condition, arrhythmias, a pacemaker, osteoporosis and high risk of a stroke might just be a step too far.
Sorry i missed the part that this is your second time, perhaps youâve gone through all the emotions the first time that your mind has just kind of accepted it immediately this time?
Of course your family will want to take all treatment for every chance for it not to come back, but they are not the ones that are going to have to suffer the treatment side effects along with all the disruption to your life and caring for your husband so maybe time to put YOU first and it sounds like you know what you want x
Hello @angelina
You asked "am I normal?"in relation to how you are currently feeling about your diagnosis and possible treatment.
I donât think there is any one size fits all response to what we are going through and each of us react differently based on hundreds of different individual factors. What matters most is that we ourselves can accept how we are feeling and we donât judge ourselves for it. Other people may not understand it or agree with it - and why would they if they are not us? - so what matters is that you understand it for yourself and are comfortable with it. And it may be that how you feel changes from time to time - that is perfectly natural too.
Your synopsis of how you are feeling resonated with me because in some respects I have felt similarly too.
I did not feel scared by my cancer diagnosis even though the swiftness of it did rather take me by surprise. I have also never felt that I have somehow been cheated if I no longer have a normal life expectancy because of it. I am 62 and have had a very full and rewarding life despite some medical issues and feel blessed to have experienced so much. I am conscious that even if I donât make âold bonesâ I will have done a lot with my life. I donât have a benchmark that I feel I have to achieve .Maybe thatâs what has made me come to the decision that I would rather have quality than longevity if longevity comes at a high physical and mental cost. My husband and family and friends all understand my point of view and my preference to live better rather than live longer and have been amazingly supportive to me.
I should add that I donât have any children of my own so do not have any dependants which is another factor that has made my lifestyle choice easier. Were I a younger woman with children or if I had grandchildren then I would of course be doing everything I could to stay around for them as long as I could. But sadly I never became a mum so this is not something I now have to take into consideration.
So I had chemotherapy, a double mastectomy and radiotherapy - with some hiccups along the way and mistakes made by the hospital too. Then I started on hormone blockers and had debilitating side effects and, whatâs more, within weeks felt suicidal to the point of starting to mentally write my goodbye notes and think about how I might want to end my life. I have had anxiety and depression before but nothing like this - even during times of personal trauma - so I knew it was the letrazole. My oncologist said to take a break and within 2 weeks I was totally back to normal. I then went to see her and we looked at my predictions and the difference with/without hormone blockers was so minimal that, with her support and understanding, we decided that I would not go back on any form of them as the side effects outweighed the benefit for me. This was the best outcome for me and sat well with how I have always felt towards the cancer and my philosophy for living with it. Unfortunately not everyone seems to understand that there are a large percentage of people (approx 30%) who canât take hormone blockers and have to stop them. This has been highlighted by a recent post I put up asking for support from others in the same boat that has generated lots of amazing support from many people but a certain amount of negativity from a few people that donât seem to get it that not all of us can take hormone blockers and whatever our reasons for stopping we all have the right to make choices on what is right for us as individuals.
I found the negativity so distressing at one point that I felt abused by it. I contacted BCN and asked for a one to one session with one of their Someone Like Me volunteers who had a similar experience to my own. We talked on the phone for over an hour and she was amazing. I would highly recommend it if you feel the need to discuss how you are feeling and reacting to your current situation.
My message to you is that you are not alone in feeling how you do and you have every right to make your own choices as to the path you take. We cannot control what happens to us but we can control where we let it take us.
I hope this helps you know that there are people who feel similarly to you. I hope you will get all the love and support you need.
With a big hug to you xxx
@jayesse Thank you for your warm hearted message. I have always put others before myself, but I am now facing important decisions that will only work if I am completely at peace with the path I choose. I am clearly not and however much I want to please my oncologist and my family, i must do what I feel is best for me and to stay true to myself. To do otherwise would not end well.
I will have to break this news to my oncologist and I hope she will be understanding and still on my side and willing to offer advice if and when I need it, because I know cancer is a journey, a long one and what I refuse today, might be acceptable tomorrow. I just donât know.
You have been very brave to have accepted some difficult treatment decisions. No one can ever accuse you of not trying. I did see your post and I believe I contributed to it also. This is a wonderful forum and you and others have never come over as trying to push your beliefs onto others and I would never do so either. I respect other members and the difficulties they may be going through. To push my beliefs onto others at a time when they are so vulnerable would not be acceptable to me or to others on this exceptional forum.
My belief is that if I can stay healthy and fit, have a good nightâs rest, eat well, start to enjoy my life again and to put this all behind me, I might just do better or at least no worse, than going down the route of relying on medication to try to prevent recurrences, medication that might come with some difficult side effects that would take away my quality of life. I am afraid of becoming so poorly that I would no longer look after myself properly and I would quickly go down hill.
Thank you again for all your support. Your words, âWe cannot control what happens to us but we can control where we let it take usâ are so meaningful. I send a big hug to you too xx
Hi jayesse, Iâm sorry the negativity affected you so much on the thread. It was quite awful how 2 particular posters felt the need to infiltrate it and back each other up. It got my dander up, but then I was able to let it go as a problem they had. @angelina, I can quite understand with your current health conditions, why you would not want chemo and why your medical team have supported that. I would, however, feel that before deciding a blanket no to ongoing tablets, it would be best to discuss how much they would improve your personal risk, so you are making the decision with your eyes wide open and on the basis of sound data. At the moment you acknowledge that you are not in a mindset of facing treatment, perhaps after radiotherapy, you might feel a bit different. Tablets are something you can easily stop if they donât suit and I can understand your reticence with the letrozole.
Its all a balance of risk vs quality of life, the latter being the most important part, and carries more weight when older, than if you are younger and minimising risk is everything. Perhaps your team would be ok with letting you defer a decision either way until after your radiotherapy? Take all the time you need to weigh it all up. You should not need to rush to a decision either way.
@entropy. Thank you. I like the idea of keeping all options open for the moment until after the radiotherapy and I will discuss this on Friday when I see the Oncologist.
My oncologist has already given me the Letrozole (after we jointly agreed to omit chemotherapy) from my treatment plan, so no doubt she will be disappointed to know I havenât yet started the med.
I will most definitely go with radiotherapy because it was always on the table. A lumpectomy without radiotherapy would not be a complete treatment. My preference would have been for complete breast removal without radiotherapy, but my tumour (2.5 cm) in relation to the size of my breast was tiny and didnât justify total right breast removal.
I am still waiting for a bone scan to assess my bone health since I have confirmed Osteoporosis in the spine. I think because I pulled out of chemotherapy I have lost my place in the queue, so I hope starting radiotherapy some four months after my lumpectomy will still be within a good (safe) time frame.
Hope you donât mind if I jump in - I have read some of this thread with interest and empathised with how you are feeling Radiotherapy four months after surgery should be fine . I had my hormone therapy prescription changed from Tamoxifen to Anastrozole and I had to be approved by a regional Pharmacist so didnât actually get it until after my radiotherapy was finished . I heard someone on another thread say that they were deferring hormone therapy until after radiotherapy as they felt they couldnât deal with two new treatments at once and her team were ok with that. You could always give them a go after radiotherapy and hopefully you will have had your DEXA scan as well. Xx
Hello @angelina I have just read this thread and was about to post to say that I had discussed delaying taking letrozole til after radiotherapy - so I think @JoanneN might be referring to me! My reasoning is that I didnât want to manage more than one treatment / side effects at any one time, keeping working and some ânormalityâ has been important to me, plus I also wouldnât know what was causing any side effects. My medical team were fine about this. After radiotherapy I suffered a neck injury that is a 3 month recovery (I am 10 weeks in) and have have delayed letrozole again as I want to be well before (if) I start taking the tablets.
I have not yet completely decided against letrozole but for a long list of reasons, may not take them.
I wish you luck with your decision - itâs your precious life to live in the best way you choose. X
@kazaroo it has been so very difficult to explain to family how I want to live the rest of my life.
My sister who is two years older has had breast cancer but at a younger age and survived it, with surgery, radiotherapy and hormone therapy. She understood perfectly how I was feeling about to face years of treatment and she supports me completely whatever I decide. I can speak freely to her about my real fears of perhaps living my remaining years feeling miserable because none of the meds for cancer are palatable.
My main problem is with two of my brothers who donât want to lose me and want me to take up all the treatments on offer. I have ended up trying to support them, to ease their fears by telling them that I have survived one cancer, so why not breast cancer? I have also told them all about the treatments on offer, but not the bit about possibly not taking them all up.
They were dismayed when I told them that I couldnât go ahead with chemotherapy because of my caring commitments. They felt I really should have put myself first this time, but my husband is so frail and totally depends on me.
I asked someone from social services to come out to assess our needs for some home support, but he refused to accept carers to watch over him and I couldnât take the risk of becoming ill myself from chemo and having to leave him for long periods if I got into trouble. I would have been having chemotherapy now and yet over Easter my husband was hospitalised again for another severe infection. He has daily insulin injections and close monitoring because he has many complex health conditions which I take care of. He has an Ileostomy (Stoma bag), needs daily self catheterisation due to urethral stricture disease. He also has heart, kidney and lung disease as well as early vascular dementia. That is quite a difficult cocktail of conditions to manage and I can get quite stressed managing the home, garden and other activities. I really am far too busy to be ill myself but of course my brothers do not understand why I cannot leave hubby in someone elseâs hands while I get treatment. It really is not so easy and I would just be worried about him all the time.
My brothers are always ringing me asking when I am going to start treatment. I donât have the heart to tell them that apart from radiotherapy, I am seriously considering doing nothing more. My close friends are okay with my decision. There are times when I wish I had never told anyone about my cancer because I do not always have the time or desire to discuss how I am feeling, and cancer is such a slow process that once diagnosed, lives with us for many years. even if we have periods of complete remission. So I am not sure if I have answered your question. Perhaps not because I have not told all members of my family my true feelings
@minib, @JoanneN, thank you so much for this information and for your support. Yes I too wouldnât want to be having two treatments at the same time, not at 76. Not sure that my body would cope. No point in throwing everything at the cancer and forgetting the patient in the process.
It has been immensely helpful to have this discussion. I will be ready for my appointment on Friday with a list of questions about radiotherapy. I am not sure how long the course will be, although I know it will be daily Monday to Friday, and hopefully easier to tolerate than chemo would have been. Our hospital is a short bus ride away, so I should be okay xx
I am so very sorry that you are in such a difficult situation caring for your husband - I can understand him not wanting other people to take care of him or be in his home - my Dad was the same at one point. I know you say he is starting with vascular dementia but itâs not reasonable for you to be expected to continue managing alone indefinitely . I really hope that your radiotherapy goes well - I found that I had some fatigue and for 3 days could barely get out of bed . It was 2 weeks before I was able to drive the 80 miles twice a week to be with my Dad who was becoming confused and unwell . Luckily my brother and his partner and my niece who live much further away were going to visit her Mum and stopped to spend time with him on the way there and then again on the way back but I realised that the situation was not sustainable .
As your husband doesnât like strange people around would your brothers or other family be able to offer you both some practical help ? I can remember doing a management study day at work and talking about time management / priorities - what is at the top of the to do list and being told that at some point every day no matter what else is going on you yourself would have to be at the top of the list . Well maybe itâs your turn to be at the top of the list .
Having said all that well I havenât had chemo but Iâm quite sure in myself that radiotherapy is much gentler on the system than chemo and more importantly unlike chemo and other therapies itâs over much more quickly . I decided to stop Anastrozole after just under 5 months due to side effects and for other health reasons - my risks from the cancer were particularly low and 5 years of possibly feeling that way ( I know not everyone has side effects and for some they improve with time ) felt unacceptable.
I understand you not wanting to talk about your cancer or your true feelings about it - many of us feel / felt the same way and I would often come out with a statement or say I was fine or getting there to avoid questions that I didnât want to answer or comments like " you must think positive " .
Your brothers will probably have no idea what all the treatments entail and I hope they will come to understand . Xx
Hello @kazaroo
You asked how I raised the subject of quality over quantity with my family.
From the very outset I told my friends and family how I felt about my diagnosis (as explained above), why I would not feel cheated if I did not make âold bonesâ and the fact that I had a quality over quantity philosophy. I had a long conversation with my husband on the day I was diagnosed and then spoke to my siblings by telephone a couple of days later as we donât live nearby. At that stage I had been told I only needed surgery and radiotherapy and I assured them I would go ahead with both.
I then wrote an email to my closest friends and extended members of the family explaining my diagnosis and what the treatment would be.
As things have changed Iâve kept everyone up to date. Everyone has supported my philosophy. Some have said they donât know if they would feel the same way themselves were they in my shoes but all have been very supportive of me and my right to make my own choices about how I want to live my life. I am very lucky and feel very blessed. Xx
I can relate in a way to how youâre feeling Angelina - I was diagnosed with grade 2 stage 2 breast cancer in January and so far have had surgery, am taking letrozole (no big side effects so far), zoledronic acid infusions (also fine) and finished 3 weeks of radiotherapy a couple of weeks ago. Didnt need chemo after the oncotype dx test. I felt quite numb after being diagnosed and wasnt scared of the surgery, altho I found daily radiotherapy quite a slog in the end.
My oncologist has recommended ribociclib but having read up on it alot, and with a close family history of bone marrow failure and my lfts bouncing round since diagnosis, Iâm currently not planning to take it (as common side effects are on liver function and drops in blood count).
Will be seeing the oncologist in a couple of weeks time and have already told him Iâm not convinced. Tbh heâs assumed Iâll take it before having a proper discussion about it or me actually agreeing, so I expect it will be an interesting discussion.
Ultimately itâs our choice tho whether to take the treatments offered, taking into account the side effects, benefits and risks, and they and others should respect whatever you decide. Iâm 52 with teenage daughters so appreciate I have different commitments/things to think about re treatment tho.
Hope you settle on a plan that works for you and that it goes well.
@lola25 thank you for your support. You are still young with years ahead of you to enjoy with the girls. We have two sons, 6 grandchildren and two great grandchildren. They are a joy and keep us going, although they do not live in the UK. One son lives in Ireland and the other in Uruguay, so we donât get to see them regularly but we are in touch by WhatsApp.
I am glad you have had no problems on Letrozole and Zoledronic acid and that you have successfully finished 3 weeks of radiotherapy. It sounds as though you will be safe.
I have looked at the predict online tool and quite frankly none of the adjuvant therapies are going to massively improve my predicted survival rates. We are only talking about 1-2 % improvement overall beyond 5 years. Surgery + radiotherapy hopefully will be enough to keep me going at least for 5 good years and perhaps beyond, but I am not closing the door on other treatments just yet.
In the meantime, at 76, my body is telling me to do everything I can to remain well since this will give me the best possible chance of a cure. I wish you well Lola and continued benefit from your treatment plan
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