Five weeks ago, I had a wide local excision to remove Pagets Disease of the nipple and high grade DCIS (multiple foci, biggest one 5mm). This was to be followed 5 weeks later with radiotherapy and then 5 years of annual mammograms (mammograms aren’t very reassuring for me as my breast cancer was only found through a punch biopsy and showed clearly on MRI but didn’t show on ultrasound or mammogram).
My radiotherapy has been delayed (NHS) and that’s given me time to research what radiotherapy is all about. Now I know more about it, I don’t feel this is the right treatment for me personally. I’ve also been researching (reputable studies and trusted websites only) how DCIS (especially with multifocality) increases my chance of invasive breast cancer going forward.
I feel women have a right to advocate for themselves in the treatment they receive on their bodies. Following my diagnosis, I was like a rabbit in headlights and just agreed to everything my consultant told me she was going to do because I was in too vulnerable a state of mind to challenge anything or do research to make informed decisions. I just handed myself over to the medical professionals, without question.
Now I know more, I have asked my consultant if I can have a mastectomy (with option to reconstruct at a later date if desired), rather than radiotherapy. I haven’t taken this decision lightly - I have researched extensively and made lists of pros and cons of all options. My preference for mastectomy is due to:
-The increased peace of mind that removing as much breast tissue as possible would give me, still recognising that mastectomy does not mean zero risk. I just do not trust this breast anymore!
-Wishing to avoid radiation to my left breast and potential side effects.
-Giving me an option to reconstruct if I wish to (my current options to reconstruct following the wide local excision and radiotherapy are potentially very limited)
When I discussed my preference with my consultant, I was given the impression that my desire to have a mastectomy was highly unusual for an early breast cancer but I feel certain there are other women out there who have felt the same…
I feel exhausted right now with the hoops I have to jump through to get what I want (the team of consultants have to agree and it is also subject to psychological assessment), while the time is ticking fast on getting radiotherapy within safe window times if my mastectomy request is declined.
Hi I do understand how you feel , having a mastectomy is a big decision and things don’t always work out how you want them too. I had Mastectomy in October followed by implant which I was happy with but unfortunately got a bad infection , had to have implant removed my chest looks like a train track with scars and bumps everywhere , I don’t know if anyone else has had this experience ? I can have reconstruction again at a later date but I am still coming to terms with what has happened .
You are definitely not alone in feeling like this. My circumstances were quite similar. I was due a lumpectomy and radiotherapy for what was found to be a 1mm IDC and malignant microcalcifications. I was told they thought they were over treating me! Then 2 days before my operation I had a call to say it had been cancelled because another area of calcification had been seen and needed to be biopsied. This turned out to be low grade DCIS but 4 cm so how they missed it the first time I just don’t know!
I’d had enough by then and my Consultant reluctantly agreed to a mastectomy without reconstruction so that’s what I did and I’ve had no further problems.
Once my final post op pathology report was in I was so glad for that mastectomy. The pathologist found a lot more and the IDC was larger than originally thought at 10mm. They also found LCIS which puts me at a higher risk and they didn’t even tell me. I only found out when I asked for a copy of the report!
The fact is that things can be missed sometimes. Trust your instincts and do what is right for you. I’ve never regretted having the mastectomy. Radiation isn’t risk free and can cause other cancers.
My philosophy was to just get it all off and out and I’ve never regretted it. I’m flat and smooth with a tidy scar so am pleased with the result. I was fortunate that everything was low grade and I had no lymph or vascular spread. So for me it was just surgery and Tamoxifen. Its important to remember that they can’t remove every bit of breast tissue after mastectomy and some will be left so as ever good margins are critical. Keep talking to your surgeon with all your concerns. Good luck x
@charlottebee There are just no easy decisions here are there? I’m sorry to hear your experience didn’t go to plan. I hope you have lots of support around you as you come to terms with what has happened and that reconstruction when you are ready will enable you to feel better about it all. Thank you for the message, it means a lot speaking to others who’ve been there.
Hi triah
There are so many options if how and where to turn my MDT meeting recommended a double lumpectomy with two different cancers 1 lobular and 1 ductal grade 2 and 1 I also have family history of the same no brainer for me I pushed for a dble masectomy with tissue expanders and implants I had this surgery on the 20 th December and all is well ATM I hope to get further results tomos
You must go with how you feel for sure it is your body xx good luck
@Frances55 - This is also why I want my breast/breasts removed - I don’t feel confident it’s all been removed. It saddens me that you only found out things when you asked for a copy of the report. Throughout, I am told what has been discovered but I’m not shown the reports or pictures. When I was asking numerous questions about my histology report, I was then asked if I wanted a copy, which I gratefully accepted. I am someone who likes the detail (I appreciate not everyone is) and I like to make informed decisions about my treatment. I don’t just want to reply on the opinion of a medical professional. It’s my life and my body. I think I need to be more proactive and just request copies of everything…I wish I’d done that from the start but, again, it was the whole ‘rabbit in headlights’ situation.
Whether I will be ‘allowed’ to have a masectomy or not, I have to wait and see (oh how agonizing waiting is!)…I am still trying to work out whether I want a single or double masectomy (nothing has been found in my right breast). I’m not a very decisive person at the best of times and it seems this decision (despite it being about me) isn’t fully mine to make…
Thank you for replying to my post and for sharing your experience.
Thank you @sammie I really admire your strength in pushing for what felt right for you and I’m glad your surgery went well. All the best for your results appointment too.
I appreciate the MDT meetings involve a number of professionals reaching a consensus that feels right to them but something is missing here…The right of the patient to advocate for themselves…Do the decisions made feel right for them? I just want to do all I can to prevent ever having to tread this path again…I know nothing I opt for gives me 100% reassurance but I need to feel I didn’t just settle for what someone else thought was right for me.
You are absolutely spot on triah and you go with what you want It is very daunting I trust them as they deal with it day to day but it doesn’t help the situation you are in all I can advise is look into every path everybody’s body is different and everybody’s mind is different in how they may deal with the treatment or after affects ,… Fingers crossed for you xx
I was told by my nurse that it was unusual that I had so many questions and that I must just trust them. Well yes, but I did have a lot of questions and it took me about 6 months to get a response to some of them. It is shocking they didn’t tell me about the LCIS and I worry it won’t be seen in yearly mammograms on my remaining breast but my team tell me there is nothing to worry about! They’ve refused my request for an MRI so if I want one I’ll have to pay for it myself privately. Tbh if you’re non symptomatic in the other breast you will have a battle convincing a surgeon to remove both, they just don’t want to do this I’ve found. If you really want the mastectomy in the problem breast then I’m sure they will agree if you push for it. Good luck.
Like you I try to be an advocate for my own health and I want to know everything too! This raises eyebrows I’ve found.
Keep advocating for yourself and don’t be afraid to ask for a second opinion either. All the best x
Absolutely not alone. I was diagnosed April 2022 at 24 years old ER+ PR+.
My consultant was talking about chemo to reduce the tumour and then a lumpectomy.
Once Id spoken with an oncologist and got more information I was dead set on having a single mastectomy.
I was supposed to freeze my eggs before chemo started too but due to 2 lymphnodes being cancer positive and the wait to start the egg freezing process being 3-4 weeks even though id signed all the consent forms and had a video consultantion I decided to stop the process and put myself first.
You are completely within your rights to advocate what you want.
Once I finished Chemo I had a letter of recommendation from the genetics doctor written to my consultant so I could have my healthy left breast removed also. I luckily do not have the BRCA gene but because 24 at age of diagnosis and lack of information on reoccurrence my genetics Doctor backed my wishes, as my consultant wasn’t going to do it unless I had the BRCA gene.
Dear Triah, you are most certainly not alone! I decided on a mastectomy early on for several reasons…1. Because I wanted to avoid radiotherapy, 2. Because I wanted to reduce the risk of needing further surgery, and 3. Because I didnt want to be left with a deformed breast. I had a flat closure as didn’t like the idea of an alien thing in my body that could either rupture or cause an infection. I advocated for my choice very firmly and do not regret my decision. If you feel this is the right decision for you then it is. I wish you all the very best going forward. Love from Tulip xxx
I had HG DCIS but after first surgery, invasive cancer of 8mm was found. It was a surprise no one was expecting as not shown up anywhere. DCIS cant be seen on a mammogram so they couldnt reassure me that there isnt more. My surgeon said for my own peace of mind, we can discuss mastectomy BUT with no breast tissue left, a recurrence could happen on chest wall and closer to organs. Its easier to treat if in breast tissue I think. Just something to think about.
Your post resonates with me completely… I would say from the outset … absolutely, always do your research and don’t agree to anything you aren’t comfortable with. We do need to trust the medical professionals but there are many different medical opinions and preferences out there and you as the patient are allowed to ask questions and explore your options. Sometimes having that choice makes it harder in a way and I had a similar diagnosis to you in that 30mm of high grade DCIS was detected on my first ever mammogram and the first recommendation was mastectomy with immediate reconstruction … I had to be referred to another oncoplastics team in a different hospital and the wait was 5 weeks (March 2023). When I eventually got to my appointment, the consultant pushed for lumpectomy with radiotherapy… her manner was also not as reassuring as the first consultant and this new info was hard to accept after 5 weeks coming to terms with the mastectomy route … like you, I did even more research and was absolutely certain I wanted a mastectomy. I learnt that with DCIS, certainly my kind, it was likely to reoccur at some stage and further surgery may be needed. I needed this DCIS gone and I have heard that mastectomy is actually far less traumatic than we think. Surgery these days and with the reconstruction options whether immediate or delayed are incredible. I was referred to another consultant - an extremely reputable and knowledgeable surgeon who performed a mastectomy, implant reconstruction and symmetry surgery on the other side in one operation in June 2023 and all went very well. I have peace of mind, the knowledge it’s all been taken away, a reconstructed breast which feels like my own and I underwent a nipple reconstruction in November and waiting to finish it off with a nipple tattoo in a few months. I am 50 and getting married in September this year.
I realise I have been fortunate in many ways as my initial negative experience led to me reinforce my initial recommendation of mastectomy from the surgeon who first gave me my diagnosis. It also gave me a chance to research and be completely happy with my choice …
Good luck to you as you navigate this journey … and do what is right for you xx
Thank you @Frances55 - It makes me feel less alone when you say you were also viewed as ‘unusual’ with your questions. I can’t imagine how I could be any other way - These are big decisions, not to be taken lightly. I’ve requested that annual MRI too but, again, that was considered to be a highly ‘unusual’ request. To my mind it is a sensible precaution and, if I keep my ‘good’ breast, I will push for that. What I am determined about is that I want rid of the diseased breast (or half-breast) that I am left with. If you don’t mind my asking…Was not having reconstruction your decision, and is that something you are happy about? I am requesting simple mastectomy without reconstruction for now but with a view to do Diep Flap if I want it later…I want to see how I feel first…
It was Triah. I just couldn’t face the more complex surgery of reconstruction. I felt so traumatised after my diagnosis. I told my surgeon I wanted everything gone. When she came to see me after the surgery she told me she’d left enough skin to enable me to have reconstruction later on and I remember feeling really angry with her. That wasn’t the plan! I’m staying flat and it’s fine. If I can just say that mastectomy can seem to be quite scary surgery. It’s not actually and I had my operation in the morning and was home walking my dog in the late afternoon. It was fine. I didn’t even have drains. My only issue was a seroma which is quite common. I’m just not brave enough to have the reconstruction surgery. I have family members who have had it done and it’s big surgery. Best of luck with what you decide. x
Thank you for sharing your experience @KirstieF. It is so helpful to me seeing how it is often not straightforward and others have had to make difficult decisions too. Unless you reach out to others on places like this, you can feel so very alone…
Thank you @Tulip29 - I really admire your strength in advocating for yourself…It’s inspiring to me. My strength was a bit delayed and it’s not really helped my case but I am doing everything I can now to get what I feel I need…
@sarahc_123 - you are right, there is so much to consider. What I do recognise is that there are no options that are without risk…If only that were an option…
@cheerful50 -So good to hear that you were able to get what felt right for you and that all went well. Thank you so much for sharing your similar experience. Wishing you all the very best for your wedding, with all of this behind you!
@Frances55 That’s really helpful, thanks for sharing your experience. I love how you were back home walking your dog later that day! How utterly fabulous!!!
