Today I had a proper meeting with my Oncologist. It was a very different experience to this time last week, where the appointment was led by someone else on her team, and the Oncologist herself just flew in and out for literally 2 minutes, and seemed very stressed, adding some slightly contradictory information to what my partner and I had just had explained to us by her colleague. Spending time with the Oncologist today, I think last week she was just having a bad stressy day - we're all human.
Today was calm and measured and I felt listened to. She accepted that I feel that chemo is not the right choice for me and accepted my reasons. She explained that chemo may or may not have worked anyway, and that would be down to my particular cancer. I said that a Macmillan nurse explained to me that the window of opportunity for chemo to best work for me is probably now, and that's a small window of opportunity, and I accept that risk. She seemed content that I'm fully informed to make my decision.
The Oncologist said that if there is a recuurrence of the cancer one day, chemo may be a possible treatment option to reconsider again in the future. And I'm okay with reconsidering it again one day if I have to. Maybe my priorities or values will have changed by then. But now, in the context of my quality of life and co-morbid conditions, it's not my idea of wellbeing.
She (mistakenly) thought that I am post-menopausal, so something on her notes about me isn't quite right. But the fact that I am pre-menopausal has opened up some choices in how the hormonal therapies are administered. Which is good and gives me a (small) selection of choices if one drug's side effects are particularly bad.
She has set the ball rolling so that in the next week or two I should be having my radiation assessment/set-up appointment, and three weeks after that, 15 sessions of radiotherapy begin. When the fatiguing side effects of that pass, I'll start the hormone therapy(ies).
I feel a great sense of relief and at peace with my decision.
Thank you for your post.
I am afraid the account was a spam one so we had to remove the post and ban the user.
Thanks for that reply. It is a balance. But here's the thing. I could suffer this chemo and the cancer still returns. No guarantees. 75% chance of survival after 10 years with chemo. 67% without. Anyone else thought about the statistics they have been given ? I'm not good with numbers but less than a 10% difference does seem marginal.
Thanks for your reply, @sydneywaters Would you mind sharing a bit about what your (or her) thought process was for turning down chemo?
Thanks for the link. Although (purely my personal choice) I'm not someone who replaces western medicine with therapeutic herbs for something as serious as BC, I do think there is a place for holistic/functional medical approaches in supporting a patient, where those interventions don't negatively impact other treatments. Diet for example, has been a key factor in managing my chronic health conditions .
Hi Kit Kat. Thanks for your reply. It is quality of life that is on my mind today. I phoned for help yesterday, Macmillan, Breast cancer nurse, Maggie's centre. All great. I think age comes into this too, and previous experience. I am 68 and had breast cancer first 21 years ago. Mastectomy. Tamoxifen, Hysterectomy, horrendouse menopause. I am no stranger to hospitals and operations. So now its back. Another mastectomy. No need for radiotherapy, but offered chemo, and, if i had not said yes, i would have regretted it. Have to try whats offered. The reality is , i have never felt so unwell in my life. i will continue to think on this, and thanks again for you kind thoughts x
Hi again @SnorkMaiden
I really felt heartened reading your message as you sound as though you've made some real progress to achieving some peace of mind with what is a huge and very personal decision.
I forgot to say that I also spoke to Macmillan and they were so helpful and non-judgemental with me. Like you I've never called helplines or engaged with forums before but at the time I did all the reading I could and spoke to many different sources to help me understand the consequences of continuing and stopping.
I also felt the same with my oncologist who was driven by numbers and facts, none of which I challenged as he's the expert and that's his job - to give me the facts to inform my thinking. I just didn't feel like a person, only a case. It was my BCN who saw me, the person, and recognised how it was breaking my spirit. I think I mentioned before that the side effects were really not bad apart from the cystitis so it wasn't that. I was also fine with losing my hair and growing a hat collection and I loved the boost that wigs gave me too.
What I did find so hard is the saying "everyone is different". Of course we're all individuals and each person reacts in different ways but that in itself was terrifying for me, that no-one actually knew what would happen to me. I found that very isolating and a lonely place to be.
I had 50% of the recommended chemo so that gives me some re-assurance and as someone has also noted, there are other aspects that made up my treatment plan - radiotherapy, bisphosphonates and aromatase inhibitors.
I guess for me it was about quality of life because of the impact on my mental health, which had never been an issue before chemo. I knew I was balancing that against longevity but I also knew that chemo wasn't going to make me immune to potential recurrence one day.
Do I look back and regret my decision - no, it was absolutely the right one for me - but everyone is different and we all have to make the right decision for ourselves without pressure or fear of judgement. We just owe it to ourselves to make sure that decision is made having been informed of the facts and consequences.
So pleased you're finding your way through this in your own way.
Keep in touch! xx
Thanks for your very warm response, @Jaybro You make very valid points. And for someone starting their cancer journey in relatively good health, those choices maybe are about short term side effects which can be managed with meds, if emotions are excluded. But that's not necessarily the case for people gambling with returning to being bed bound for years or the rest of their life. As I am.
That's one heck of a burden on loved ones, and hell to live weak and in pain from chronic health conditions for which there is no cure and precious few therapeutic options. And it also doesn't take into account the wider emotional and physical journey that affects not just the patient but their loved ones. It's not just about fear. But neither is fear an in-valid emotion.
Don't get me wrong, I'm not arguing a case for refusing treatment. I'm looking at people's experiences of making those decisions and living with the positive and negative consequences of them.
Hi again @tots2508 It sounds like an emotionally very difficult time. Great that your other half supports your decision, you've got that rock of support. Well done for making a courageous choice, it's not simply a black and white choice for some people, IMHO.
I was reading the chemo and radiation literature today that Macmillan gave me. It filled in some gaps of knowledge left from my Oncology appointment, which was helpful. And it prompted me to call my Oncology nurse to ask her take on what are the long term affects of radiation to the 3 different areas I'm going have it done. I'm glad I had that chat because the affects seem to vary and she spoke in a very straight forward way - 'this bit will get red and sore, so will this bit and it'll peel. We've got cream for that. That bit will probably be fine till the week after treatment ends...' None of the "You might not get xyz side effect" way of skirting round some of the day-to-day real experiences that other staff have portrayed so far. So that was helpful and quite grounding.
A bit later, I was reading more from the Macmillan chemo booklet and noticed their support line number. I don't think I've ever called any kind of suport line before. (I'm a ponderer and a writer more than a talker). But I had too many variables in my head and I kind of wanted to talk around them with someone, rather than specifically pinpoint answers. The what ifs and whys rather than doctor type questions. It really helped me get in some kind of order what my concerns are and ways to order them, and things I need to resolve after my very fleeting and somewhat contradictory meeting with the senior oncologist - which raised more questions than gave answers.
It was really good to be able to just let it all tumble out over the phone in no particular order with someone very knowledgeable but also who is outside of my immediate Onc team. Like you seem to have experienced, I got a sense that my Oncologist is fixed on one route by hook or by crook, forget the side effects, and not interested in the wider holistic aspects that are very important to me, especially regarding quality of life. There's a middle ground that needs to be welcomed into discussions with cancer doctors without feeling taboo, so that there really is that holistic approach in the truest sense of the word. At the moment I feel my Onc is in a longevity competition, duration, numbers, and hasn't noticed there's a human being in the middle of it.
Towards the end of my phone call with Macmillan, I asked the nurse whether people turn down cancer treatment often. She says they sometimes do and for lots of different reasons, and different sorts of cancers. For many, it's because like me, they have other health conditions that will be negatively impacted by one or more of the treatments. Some refuse chemo purely because they can't bare to lose their hair. Some so that close family members don't have to see them weak and ill, to protect them from being a burden. Some because they're having other treatments too that will improve survival rate to some extent. Some because it's too dusruptive to their work. Some because they're older and enjoying life as it is and don't want that quality of life to change.
There were so many different people's experiences she shared with me. It really opened my eyes to how individual and valid our own decisions are, they're personal and important to us, whatever anybody else thinks. I think the important thing is that the decision sits comfortably with us, and that we don't have regrets (regrets of either turning down a treatment, or regrets of accepting it and its consequences on health, loved ones and so on)
@Jaybro I'm so sorry to read about your secondary diagnosis Jan.
I just wanted to say, great message and I absolutely agree with your point about making an informed decision that is right for you, that is so important.
Wishing you all the best.
Hi Snork Maiden
As you say, it’s your body, your decision. But make sure it’s a fully informed decision, not one driven by fear and anxiety. They in themselves are horrendous (I’ve been phobic most of my life) but they can be treated alongside chemo. I almost rejected chemotherapy out of fear. Fear for the treatment, fear for the side effects, fear of my own fear. Fortunately I had a breast care nurse who turned to her student and said as an aside “This isn’t just anxiety, it’s a lifelong condition” and I knew they’d help me every step of the way. No one wants months of constant illness, though you do get used to it to some extent. Everyone is fearful of it because of the bad press it gets. When did you last see a headline celebrating someone’s recovery? Not interesting news.
I confess I’ve had to delay writing this for half an hour. At first I was heading into writing a diatribe you just don’t deserve. As you and I have said, your body, your choice. But speaking as someone who got a secondary breast cancer diagnosis this Spring, for which there is no cure, please find out the likelihood of recurrence in your case. My body was totally cancer-free after the full works 2018-19. But scans can’t pick up everything. Surely a few months of illness and anxiety (which can be controlled) is better than endless chemotherapy, knowing in the end it will be futile. Months? Years? Who knows? I’ve just read a post on a different forum from someone who has lived 18 years with her SBC. But that cloud of ‘when will it be?’ hangs over you and those who love you and there’s no way of putting it right for them. My heart breaks each time I catch my husband looking at me as if to imprint a memory. I’m ok with the diagnosis. His world has fallen apart, I can tell.
I’m sorry to be the one to challenge you (remember, I do respect your decision) but sometime down the line, you could find yourself in my position. Find out the likelihood please before committing yourself to an irreversible decision.
Wishing you a good recovery, whatever treatments you have,
Sorry you’re having a bad time.
I guess no one can tell you the actual consequences of choosing to discontinue chemo only the potential consequences. You have to do what is right for you....but make sure you are fully informed by talking to your team before you make a decision.
Even when you are NED after surgery there may still be cancer cells in your body...they just can’t be seen by any scans until they get bigger over time ( often many years) ....they don’t always travel via the lymph nodes...they can also travel via the blood. Are you having other treatment? Radiotherapy ...hormones tablets? Biphosphonates? Because if you are...then they will be an added protection for you and may help in your decision making.
I had a 12mm ER+ tumour with 1 lymph node positive....my benefit of chemo was 3.8% .... but like my oncologist said to me....percentages are not about Individual people....they are derived from statistics about your tumour status..... so the actual benefit may have been much higher....for me there was never any doubt about having chemo....but I understand that people do choose not to have it....I think you need to be able to make that decision and be able to live with it....and if so that’s ok....me personally, I would always have been thinking ....maybe I should have had it.
could you have a reduction in your dose? Or less rounds? I was down for 12 paclitaxol and 4 EC but was told if I couldn’t tolerate them well then I could reduce to 9 paclitaxol and 3 EC ..... in the end I had them all but with a dose reduction in the last 3 paclitaxol.
i still have peripheral neuropathy in my hands and feet....so maybe I should have chosen to reduce the dose earlier....but the outcome may still have been the same.....it was the decision I made at the time...and I live by it now.
i also developed a blood clot in my arm from the PICC line, which was quite scary at the time, and then had to inject myself with blood thinners daily for 6 months as well as the filgrastim injections when on EC....I also lost a lot of weight and my BMI went down to 17.5 .
But on the plus side....I never felt sick just very tired and fluey.
I hope you come to a decision that you are happy with.
Hi. I am questioning chemo. Which would add 8% survival after 10 years. First round a week ago, hit me like a truck same day and ongoing. Need to know consequences of saying no.
Thanks. It isn’t just the effect on my body. It’s four and a half months, at least , of being ill. And my husband is struggling seeing me like this. Can’t find the motivation to carry on at present.
I am considering saying no to rest of chemo. One week since first treatment with EC-T. Horrendous effects 3 hours later. Had Doctor out early morning. Back at hospital day5. Frightened to have any more. Even don’t want to inje ct myself. Got to weigh up pros and cons. Cancer not evident anywhere in body. Two lymph nodes cancerous. Precautionary chemo. Is it worth it .
No one wants to have chemo but 9.5 per cent is a significant number in improving survival rate . Mine was six per cent and I had no hesitation in going for it. It isn’t nice but it passes and they look after you. I had 9 weekly paclitaxel plus 3 FEC took 18 weeks plus radiotherapy lymph node clearance. Please listen to your oncologist . And don’t turn down what could be a lifeline long- term
Thanks for your reply @SnorkMaiden. I was so worried and nervous about talking to my oncologist about it too.
I had an extremely tearful call with my BCN in the first instance because I felt so broken mentally by the chemo. I'm such a happy person and glass half full but it was eroding that person and i felt it was only going to get worse. She referred me for counselling at that point and recognised I was losing my sense of self. I did ask if she knew of anyone else who'd refused chemo, which she didn't, but she did re-assure me that it was only one part of my treatment plan and I was still proceeding with everything else.
She told the oncologist of my decision so he knew ahead of my call with him but I was so nervous, worried, anxious that he'd try and convince me to continue. We did talk through the options, and my BCN was so helpful on the call. They have a duty of care to make sure that you have all the facts to make any decision, whether that's understanding what's involved when you start treatment or deciding to stop.
I also find with healthcare that it lacks that holistic view. It wasn't one thing that was the issue for me it was collectively so many things to do with the chemo. The oncologist, on the other hand, was only seeing one aspect of it and trying to mitigate the side effects but that was only one part of it.
It is absolutely your body and your decision. Be strong! You're not alone in your thinking.
Thanks so much for your reply, @tots2508 I'm sorry you went through such a bad experience. But pleased you've got to a place where you feel content with the choices you've made and that they are right for you.
I'm nervous that the Oncologist won't respect my decision on this. I got the impression today that she believes I should opt for what she called "the standard treatment" irrelevant of my other health conditions and desire to avoid exacerbating certain symptoms. But surely it's my body and my judgement. And is it really such an unconventional choice to decline chemo while accepting all the other treatments? I was starting to think I was the only one thinking that way!
I've discussed it with my other half who is very supportive of my decision.
I had a similar experience. I had a lumpectomy and reconstruction with 3 lymph nodes removed last September, which were clear. I was also told I'd need two weeks of radiotherapy.
Due to further test results my oncologist then recommended 4 sessions of two different chemo drugs. This had been my worst nightmare.
I had two rounds of chemo and then stopped. It was taking a massive toll on my mental wellbeing, and being in the middle of the pandemic. My oncologist offered to reduce the dose or switch me to another chemo drug but nothing would have convinced me to carry on. Whilst he is an expert in cancer, I am an expert in me and I knew I'd reached my limit of what I could tolerate. I had discussed this with my BCN who subsequently joined the call with the oncologist to support me and to be sure sure I had all the information to make an informed decision. I'd also done a lot of my own research.
I had my ovaries removed in February and am now on aromotase inhibitor (Anastrozole) for 10yrs.
Hope this helps. Happy to chat more if it would help but remember it's your body and as long as you're making an informed decision do what's right for you. I don't regret my decision to this day - it was the right one for me.
I've had a mastectomy. I plan to agree to the proposed radiation therapy to my chest wall, axillary and supraclavicle lymph nodes. And agree to shutting down my ovaries with an injected drug, plus 5-10 years of an aromatase inhibitor.
However, my Oncologist wants me to also have chemotherapy just in case the cancer recurs elsewhere in my body in the future. She said chemo will add a possible 9.5% increased likelihood of survival after 10 years.
I do not want to have chemo. On top of all the other treatments and their side effects, and some chronic health conditions that I already live with, it's too much.
Has anybody turned down chemo or any other aspect of their proposed treatment plan? What were your personal reasons, and how did you rationalise it to the doctor?