Feeling disfigured.

Dear Community

I was diagnosed with breast cancer - a significantly large tumour described as 'aggressive' - was found in my right breast in January of this year. I suppose I feel ever since then that a huge truck has collided into me. You will perhaps know the feeling. Im on my own and feel very frightened alot of the time (i have lovely friends but it isnt the same as having someone close). The horrors of chemo and the cold cap and side affects such as nausea are all on going and Im trying desperately to be as brave as I can. I do know that the nausea, hair loss and the PICC line are all reversible.

However my main concern is Ive had a right mastectomy (skin sparing nipple sparing) but feel horribly disfigured as a result. At the same time as the surgery I was given an implant which was supposed to offer a reconstruction. However this went badly wrong involving an infection & removal of the implant - none of my requests were taken into consideration and I am now horribly conscious of what they have done.

I had wanted a double mastectomy to alleviate my on going anxieties (I have a strong family history) but also i thought asthetically i would be more able to cope - i didnt mind loosing any volume (Im quite small in any case) but being left with one normal breast and one that is now (with a temporary implant) completely mishapen and miscoloured due to the infection just feels so awful and I cant seem to get past it. The male surgeon involved (in the NHS) seemed completely unable to appreciate my distress and suggested that more saline to increase the volume on the right side would fix things - this is clearly nonsense and I have stopped seeing him. The entire team have been male so far which I think I have found pretty intimidating.

I have now consulted two surgeons (this time both female) one private and one private and NHS.They both immediately said it was entirely reasonable for me to feel significantly upset by the result and they can see why Im looking for assistance.

I have more chemotherapy to go so nothing can be done immediatey.

Does anyone have any helpful advice or thoughts they can offer of their own experience?

Im feeling pretty desperate

thank you so much for reading

Krissi

Offline Dor06 over 6 years ago

Hi Krissi. You have every right to feel distressed and upset so you are right in seeking second opinions. I had numerous non cancerous lumps in my left breast and after consultations and discussions on where to cut me I was then seen by a totally different consultant on the day who decided to cut me in a more disfiguring way. Although I was on a trolly, g owned up and the next patient I refused to sign the consent form! Long story short he did what I asked but with no grace. It's so hard to stand up for yourself in these circumstances, do you not have a close friend to be with you, that you trust to help. If you are still having treatment take it a day at a time, give yourself time to recover then look at the options on offer. The lady consultants sound more understanding so stick with them. I'm sure someone on here will have more information from their experiences or the nurses may have relevant information. Keep talking to us and we will shore you up. Virtual hugs, I'm sorry I can't help more. Carol
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Offline CannonsLoose over 6 years ago

Hi Krissi,
I understand your point about removing both breasts. A bilateral mastectomy is easier to manage post op. My cancer was in the cleavage and the left breast, so they initially said they would essentially take my left and half of my right breast away. Reconstruction wasn't an option for me, plus maintaining all of my muscle strength in my back was important. From the get-go I said take them both, don't waste all our time and my distress at living with 25% of a pair of breasts. Thankfully they took that as a green light and did that.
If you are near / in London, I had three NHS surgeons for my mastectomy in August 2017; my two oncoplastic surgeons are both female and a plastic surgeon (male). Additionally, the two oncoplastic surgeons did my bilateral axillary node removal two weeks ago. They are really brilliant, I'd say they have all taken the time to listen, but they have very different styles and there is one I find particularly helpful at discussing things with, and she describes things in a way I understand, and she seems to understand that I am a human and answers my questions. The other two are a bit more 'jolly hockeysticks' pull up the bootstraps and crack on types, but they answer my questions and I have built rapport with them.
If you feel strongly about getting something sorted, perhaps you could contact the London MacMillan Centre Breast team? I don't think they discriminate against different locations around England and Wales. Having those initial conversations may lead you to get something booked in for the future, post chemo.
If you are done with breasts and happy to go without, I can vouch that life post breasts is actually fine. Clothes are the only thing that are a slight issue, as I have a scar vertically and my chest is a little concave in places, so finding clothes that aren't low cut or too tight can be interesting. Aside from that, I have got used to my new frame now. I had an enviable frame before, now a little heavier and no boobs, I just look more "athletic".
My expectation is that your current issue with your right breast will be temporary and will improve in its look. Seeking other surgeons will definitely empower you to take control of your situation. I too am on my own, and even the smallest things I can control mean a lot to me, and I think it is part of the whole psychology of cancer we have to deal with.
Good luck with your journey and I hope you get the doctors to help you through.
Lucy
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