Breast Cancer Now Forum

It sounds like you have made the right decision for you, @lynne-marie, and it's important to feel that way. Well done for making a difficult decision. I hope the hormone treatment goes well.  Take care.  ... View more

How are you feeling, @lynne-marie ? Do you feel you're in a more settled place emotionally, about what you want to do next?  ... View more

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. ... View more

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 . ... View more

@Sue Pat Great that you've had good service from them. I bought the largest of the Nicola Jane bra pockets to amend one of my bras myself. Unfortunately they are much too small for what I need. As are their bras. Sadly, that has been my experience of all mastectomy bra companies. It's like big boobed women aren't allowed breast cancer. It makes me feel like a freak.  I asked the BC nurse on my first visit whether mastectomy bras are even made in my size because I hadn't been able to find any online, and she said: "Of course they are." Sadly that wasn't true. The hospital didnt even have a surgical bra to fit me after the op, and they couldn't work out how to fasten on me the front fastening bra I had bought (in order to obtain anything non wired and front fastening I had to sister-size up in the back and down in the cup multiple times, which meant half fastening the bra above my natural breast, pushing the breast up from underneath into the cup and then contuing to fasten it to the top - they couldn't work that out and I was too stoned from the GA to understand what they were doing wrong). So they sent me home in my own back fastening bra instead,  saying it would be fine and that it could be done up from the front and spun round to the back - but they forgot that the drain tube doesnt allow that.  The next day I spent an hour trapped in it crying in agony, and the band became stuck above the drain tube exit wound. It was a dreadful experience.  There are also far fewer prostheses to choose from in my size which is a big problem for getting a shape or texture that's even slightly symmetrical. 😞     ... View more

What a terrible experience, @delly If someone doesn't know How to do a fitting on a woman who has had a mastectomy, especially given there are both medical and emotional needs to take into consideration, they really ought to be honest and say that they're not experienced in that speciality. Otherwise it's not only cruel but potentially harmful if, for example, the customer doesn't know that underwires or vertical boning might not be safe at their stage of treatment. I'm so sorry you went through that. But really pleased that you eventually found an organisation that know their stuff and could really help you.  ... View more

@Evie-S (and anyone who would like their own bras pocketed to take a prosthesis), below is a link to the company I've been using. I've no affiliation to them, just a customer who can't get mastectomy bras off the shelf in my size.  They will put pockets into non-wired and wired bras, even sports bras and swim suits.  I don't know if there are other companies that offer this service too - although I know that Royce (who make non wired bras in a wide range of sizes) will pocket a new bra bought directly from them. Woman Zone (same company that pockets your own bras) will also add pockets to new bras bought from their own website (they sell a few different brands but only a handful in GG+ cup sizes) and they make bespoke pocketed swimwear for smaller bust sizes too, apparently) They offer virtual fittings (which I had), ABC brand prosthetics and bespoke prosthetics created from a body scan, I think up in the Warrington area. The body scan service I think might be rather expensive though.  Here's a link: https://woman-zone.co.uk/bra-swimwear-pocketing-service   ... View more

Well done, @Sue Pat That's some excellent lateral thinking using a scrunchie!  ... View more

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. ... View more

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) ... View more

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.  ... View more

Thanks, @Impatience  I took your advice regarding determinedly sticking to the exercises and I'm so glad I did. I've thwarted a couple of areas of vertical scarring inside that were becoming restrictive, and my shoulder has a better range of movement than it did before the operation. Hopefully it'll stand me in good stead for radiation to the area. How are you doing?  ... View more

Hi @Sue Pat . Sorry for the late reply, I lost the forum for a couple of months! I hope your surgery went well. How are you feeling at the moment? My surgery went smoothly. I still have some seroma but the wound itself seems to have healed well. In terms of living lop sided, I am finding it a bit difficult. Mostly trying to disguise it with tricks with my clothing. The prostheses I've been given aren't a good match for me in either size or shape. However something unexpectedly good came about recently. The company that pockets my bras (Woman Zone) phoned me just to take payment for a bra and I asked their advice about why I might be having difficulty getting enough symmetry to hide the size difference through even baggy clothes. Off the back of that, they offered me a virtual bra/prosthetic fitting online over Zoom. It was really helpful and made me realise that both the size and shape of my current prosthesis isn't a good match for my natural breast, and that alternatives exist.  Although they sell prostheses themselves, they suggested I contact my BC nurses again to explain the solution proposed, and my BC nurses have asked their prosthesis rep to get in touch with me. So hopefully I'll eventually find a reasonable alternative and can just do a straight swap for free via my hospital for the original one they gave me. Fingers crossed the works out.  How are you getting on with bras and prosthetics, and finding clothes you like to wear? ... View more