Anyone else out there that doesn't want masectomy? Importance of checking out options and also battling BMI criteria.

Hi Samroz3 welcome to the forum and thank you for sharing your story. It makes interesting and thought provoking content. Interested to see what others think..Best wishes Gailx

Hi, I have inflammatory breast cancer it is a rare and aggressive cancer. I would rather not have a mastectomy but it’s crucial and is the standard guidelines for this type of cancer and there should be no reconstruction for at least a year after radiotherapy. Please consider this because it’s the safest option for you. There is an hospital in Birmingham that specialises in this type of cancer if you contact them they’ll advise you the same. I wish you all the best in your treatment. 

Hi Twinkie, 

That is your choice and I appreciate your sentiment, however, I am aware of the risks and complications and what it is considered for my current and physical and mental wellbeing, and for my type of cancer a total masectomy is still not a 100% or total guarantee, so it is important not everyone is fit into the same standard, as everyone is an individual and what one person needs may be different to another.

Unfortunately the NHS has got too used to people accepting total masectomies and I think this is partially part of the reason that there are no non invasive treatments being developed or more accurate methods to determine active cancer cells compared to healthy cells, as it is all too easy to remove someone's breast and get complacent with their current treatment options, they could also in fact be removing a breast in which there are no active cancer cells.   

I was interested to note that there has been recent research that has found in some people a combination of phesgo and lappatrinib had removed the necessity for a masectomy and had positive outcomes.  The problem is that they advise masectomy and do not offer other options because they assume everyone would want a masectomy, therefore, until I said I did not want one the option of phesgo was not even discussed.  It is up to each individual to weigh up the risks, the costs and benefits and to decide on what is ultimately best for them, for me personally current the Phesgo seems to be working for me, my mass disappeared after chemo and my tumour is now 13mm, I am yet to find out if the cancer cells are still active or whether they are dead.  The options currently for treatment are not good enough because ultimately we are given a choice of poison (chemo) or mutilation (surgery), and I am hoping that if everyone with inflammatory breast cancer pushes for progress in treatment options then these should be progressed so people don't have to have their breast removed or healthy tissue removed unneccessarily.

In terms of the IBC hospital in Birmingham, I reached out to them and was very disappointed, they do not seem progressive and offered nothing different.  So far I have found the Royal Marsden has been the best hospital in terms of offering different surgery and reconstruction options, should I decide to go down that route either now or in the future, that other hospitals said were not possible.

Hi samroz3

I totally understand what you’re saying I don’t want a mastectomy either in fact I’m dreading it. I haven’t had a good response to chemo I still have a large tumour so it hasn’t left me with any options. I had phesgo and will carry on with it.

I was told that the full non skin sparing smx was the only way to treat ibc that’s why i commented on your post but as you’ve had a good response to chemo then I understand why you don’t want to go ahead with the smx. 

Sorry to hear you haven't had a good response to chemo.  Have you had a chance to speak to your prospective surgeon/s about masectomy and or possible reconstruction options (if reconstruction is something you are considering)?

I was told the same thing that it should be full non sparing with reconstruction a year later but Royal Marsden have presented me with some other possible options and reconstruction immediately after but obviously there are risks to any of the options really.

Ironically, a lot of women on a support site I used to go on said the chemo was worse than the masectomy but I think it depends on your personal circumstances and psychology, as well as breast size and age can also be a factor for some people.  

The diep flap reconstruction looks pretty good from the photos I have seen, so not sure if any one has shown you photos of masectomy and reconstruction or if you have been told about show and tells where women who have gone through it talk about it etc, I would recommend you ask about this if you haven't already and also ask someone to talk you through reconstruction if you are interested in it.

I was hoping to have an implant which was an option that was not initially something I was told I could have but then has been presented as a possible option, I thought this would be a good option but I was told it isn't and by looking on the photos of implants on one breast the results did not look good.

With my team I have pushed for conversations with the masectomy surgeons as well as the plastics team so as a result was able to spend a lot of time asking questions and getting them to talk through everything and show me photos etc, which makes me feel a bit more comfortable that should I opt to have the masectomy and reconstruction either now or at a later date that I know what to expect and makes it a bit less scary.

I’ll be having the diep flap reconstruction next year, my friend has had this done and it looks really good and a really good tummy tuck aswell so that’s a bonus.
I’ve spoken to my surgeon and she’s explained everything to me. I wasn’t given an option for an implant probably because of all of the skin she’s taking.

I hope everything goes well for you as I’m sure it will do.