Thanks Jolamine,

i got the feeling that it was inconvenient for them to answer so many questions. I always go with a long list written down and I think the consultant gets weary because she has back to back patients! They just kept telling me that they didn't really know yet and we need to focus on chemotherapy for the moment :-( strangely I have had a good response so far to the chemo - the MRI showed that so I am suspicious that covid May be influencing. I think I may be best getting advice on what my rights are as a patient regarding second opinion / alternative options if I'm not happy with the treatment proposed...

I'm coming back to this again now because it's at the forefront of my mind still. The situation hasn't really changed and I suspect my care team will be recommending mastectomy when I finish chemo although it's not certain until I get my end of chemo scan.

Even if a lumpectomy increases my risk of reoccurance a bit, I'm still convinced it's the right choice for me, for my values and for my lifestyle. I'm single and dating - it might be different were I married with children. I've tolerated chemo quite well too - if I knew I could keep my breast I'd do chemo again in a heartbeat. And my real fear is the cancer returning in my spine / brain / liver etc and a mastectomy would do absolutely nothing to prevent that from happening. I'm willing to follow doctors' orders in every other asepct, drugs, radiation, horomones, targted therapy and lifestyle choices but I feel like the mastectomy is just a step too far... it's my dealbreaker. What I really want to know is if there is anyone out there who was advised to have a mastectomy but went against advice with a lumpectomy instead? What was the result? 

I keep being told that the doctors aren't allowed to do anything to me that I don't consent to, and I get that. But that leaves me with the doubt, if I don't consent, would they offer an alternative surgical option? My fear is just being discharged and thrown out on the street if I say no to something :(

Hi Ellen,

It may not feel like it at the moment, but you are perfectly entitled to ask for a second opinion and to refuse any treatment options you don't want to undergo. At the end of the day, it has to be your decision and yours alone.

I had a lumpectomy first time around for a grade 1 Pure Mucinous Breast Cancer. I was told that this was a less agressive type of cancer, yet I found a lump in my other breast 6 months post-surgery. Fortunately, this was benign. I then found another lump in my original breast a year after my surgery and, this was cancerous.

I opted for a double mastectomy without reconstruction and, have never looked back. It was definitely the right decision for me. Whatever surgery you have, there is always the fear of recurrence ad, this is something that everyone with a cancer diagnosis, has to learn to live with.

I was in my sixties at the time and continued with hormone theraypy for 8 years after surgery. I am married and had a grown-up family, but I can understand that you are at a different stage in your life.

There are a number of changes in cancer treatments due to the current pandemic and, performing mastectomies instead of lumpectomies seems to be one of them.

Factors that should influence your decision are age, type and grade of breast cancer, staging, genetic issues, general health and whether you are HER2 positive or negative. Your surgeon should be in the best position to advise you of the best option for you. Many people with more aggressive cancers seem to cope well with mastectomies, followed by re-contruction of the breast.

Continue to write down a list of questions before every appointment and, make sure that your consultant does answer them all for you. I eventually had to get a second opinion and changed surgeons after a year.

I hope that you reach the right decision for you in the end. Please let us know what you decide. To be fair, your surgeon won't be able to advise you until s/he discovers how well the chemo has worked for you, so try to be patient..

Kind regards,

Jolamine xx

Hi ellen. Im on my 3rd round of chemo for breast cancer too and will be due an op at the end of this year or early next year. My left breast is full of cancer but my right has a small tumour in it. So i was told a while ago it would be a mastectomy for left but they're not sure whether the right will be mastectomy too or a lumpectomy. And ive also been told i won't be able to have a reconstruction done right away. Im due to see my surgeon next week so.lots of questions! Its such a big thing to go through isn't it? I would try and talk to your surgeon and breast cancer nurse again and seek as much advice from them. Hope you don't mind me randomly jumping onto your post lol. Its nice to talk to someone whos in a simular situation and at a simular stage to me. Good luck with the rest of your journey

Hi Ellen,

I'm not a medic. I agree with Jolamine when she says that you should get all the statistics. These will probably be more accurate after the chemo because the medical team can then factor in the response to chemo. Once you have the figures, which will be along the lines of X% chance of recurrence without mastectomy vs Y% chance with, you will be able to make an informed decision. But there is no chance of you just being discharged without further treatment. That will never happen. They will do their utmost to cure you, while respecting your wishes regarding types of surgery.

Wishing you all the best, Ellen. Harry

Thanks Jolamine,

I guess my main doubt is that if I absolutely refuse mastectomy, I know that they can't chase me down the street and force me onto an operating table, but would they allow me the wide local excision that I want or just tell me to have no surgery at all? I don't want to be left without any surgery at all because I know that really would affect my survival rates. I spoke to a woman on a cancer care helpline and she said that she thought the most likely would be if I outright refused mastectomy they would offer WLE instead. When you had your lumpectomy the first time, what was the dialogue with your care team like? Did they offer you that option straight away or did you need to insist on it?  I'm struggling with what this idea of "choice" about treatment, I know I can choose not to have a certain treatment, but does "choice" imply that they need to give you more than one option? 

Thanks Harry. I think my fear is saying no to a type of surgery and then them throwing me out on the street :silly: or just saying "fine! We won't give you any surgery then!" Which isn't what I want either...

I do fully intend to listen to what the doctors tell me.. I even think I'll record it on audio recorder to play back after my visit. I don't want them to accuse me of not listening or not fully understanding. 
 

i just feel that they make decisions based on your scans, your test results but not on your priorities and lifestyle because they really don't know who you are as a person and what you value... 

Hi Amy! Thanks for your reply.

i hope that everything goes well with your consultation - I think part of the reason that im

mastectomy to me seems intangible is because of the delay with reconstructions. If I knew I could wake up and have a new breast straight away I would probably consent to it but the covid protocols are the moment have meant that there are huge delays with reconstructions. I know that these protocols are supposed to protect us from covid but to be honest I think they are inhumane... sorry im

moaning a lot.. I feel quite passionately about this as you can tell! I really hope that your surgery goes well and all the best :-)

Thats ok, i moan a lot too lol. I think we're entitled too! I would've loved a reconstruction at the same time but ive been advised not to. Im gutted but i know i need to follow their advice. And i haven't had an op before so i would of preferred to get it all done at once, not sure im keen on more ops in the future. When does your chemo end? As mentioned before, once your surgeon has all the information at the end, then they will hopefuily be able to give you a clearer idea which is the best option for you. And tell them all your concerns and ask lots of questions. I certainly will be lol.