Hi I need to make a decision but keep going back and for, so after advice from people who have chosen either option and can share their good and bad experiences.
Originally I wanted skin sparing option with expander to then later have reconstruction with muscle taken from else where. I thought this option would appear the best as keeping the original skin and would also feel less restricted but worried about complications of foreign body in me.
Now I am considering simple mastectomy for the reason of its quicker recovery and less complications and then have the reconstruction at a later date. However this option is now making me feel anxious at the thought of feeling depressed with my image. I know to some this is a small price but I dont want to go down hill with my mental health after staying strong for so long an going through so much so far.
They have said they are unsure yet if I will need radiation. As my lymoh node is showing full respone and that tumors have shown possitive response but not a full one. So if the results of removed tissue are greater than 5cm will need radiation. Also due to not being a full response they have said I will need more chemo after surgery.
Just so confused right now. I have an appointment tomorrow with the breast care nurse but due surgery on 14th so have said will need to make decision. I feel like they are advising/pushing towards simple but not sure if thats the right decision for me an rather for ease for themselves
Any experience would be great
Hello
I completely understand how hard it is to make decisions about your treatment.
I had a bilateral mastectomy 7 weeks ago. I was told I couldn’t have had a reconstruction at the same time (even if I had wanted one) as I already knew I would need radiotherapy and my consultant said radiotherapy can damage the reconstructed areas so he didn’t recommend it.
It wasn’t an issue for me as I didn’t want a reconstruction in any event because a) i didn’t want more surgery and more wounds to care for and b) I had already decided I wanted to stay flat and maybe have a mastectomy tattoo in the future.
I personally am really happy with my decision. I healed really well and my scars are really flat and I had only a tiny bit of swelling. Instead of boobs I have two scars that look like two smiles and I love them. Most of the time I now wear a flat bra or stretch camisole but I do have some bras I can put prosthetics in if what I am wearing needs a bust shape. I don’t feel less feminine because I’m flat but I have started to wear a little more makeup and accessories more to give myself a bit of a lift.
I feel more ‘me’ without the prosthetics and am more self conscious if I have to use them.
The only person who matters in this decision is you and how you feel about yourself. It’s your body and your self image, not the medics’ and friends and family. Perhaps sitting down and writing down a pros and cons list for each of your options will help you choose.
I had been really worried about the surgery as I’d never had surgery before this. In fact, it has been the easiest part of the whole thing so far.
Wishing you all the best.
Xxx
2 Likes
Thanks so much for this. I wanted to have a bilateral but they won’t let me as other breast is unnafected. I wanted it for peace of mind and not be stressing. Part of me aldo worries about the way one side will look against the other. I’m not allowed full reconstruction straight away either but can have the skin sparing one. Glad to hear surgery has been the easiest part as same as you never had surgery or anything before an that is also a worry x
1 Like
I’m another bilateral mastectomy and chose to stay flat. Recovery was quick and I was back running and in the gym within 10 days.
I love love love my new body - pity it took cancer to get me there - and I’ve since lost two stones (five months after op) and my clothes hang beautifully.
I don’t use prosthetics but instead nice camisoles and soft vests which I could never do before.
Good luck with whatever you choose xx
2 Likes
Can I ask was cancer in both breasts an therefore thats why bilateral was done?Please dont answer if you don’t want. I requested this but they have said no even though clinical psycologist agreed with me for my reasonings etc x
Yes - I found the original lump, then calcifications were seen which turned out to be DCIS, they then checked the calcifications on other side which also turned out to be DCIS, so double mastectomy advised.
Was the correct decision as the 1cm DCIS on one side was actually 5cm, and the 1cm on the other was 6cm with two tiny 0.3cm invasive. Had they gone for lumpectomy they would never have got the margins.
To add, those tiny invasives were never spotted on four mammograms, one stereotactic mammogram and four ultrasounds. The team were not even looking at that side but I nagged them as I had only had a mammogram last year and I had left the hospital and they rang two days later to say the radiologist had gone back to look at the scans and saw a very small amount of calcification which was ‘likely to be nothing’.
I do wonder that some of the cases you hear about recurrence on other side could well be tiny tumours that were not seen on the original examinations
1 Like
Love this post. Nice to have this clarity.
1 Like
My cancer was both sides - 3 different types including HER2 on one side.
I think you should ask to see another surgeon if you want a double mastectomy. Failing that, if you have another hospital near enough, you can ask to change I believe.
My surgery told me I could have just a lumpectomy on one side but raised no objections when I said I wanted the double mastectomy.
1 Like