New Here - Saying Hello

Hi 

Sorry to see you have had to join Macmillan groups at such a young age - but welcome anyway!

I can't offer advice re mastectomy (sorry - I had lumpectomy/WLE) but didn't want you to feel that no-one was replying to your hello, despite the 'likes' you've received.

I guess with regards to your well meaning family is to just try and shut them down and tell them it's your body your choice (even though it is actually based on the UK guidance). 

With DCIS, I would have personally thought as it hasn't yet become life threatening cancer, that it would be 'overkill' to remove both breasts and a great deal more for you to have to undergo.  A friend of mine had a breast enhancement operation - nothing wrong, she just wanted larger breasts and she recovered very quickly - whereas the recovery from a mastectomy (and tbh just the lumpectomy) is a great deal more.  My friend was back to normal in just a few short weeks, whereas me after 80mm WLE, it was about a year before I was completely pain free and sometimes even now I can get the odd pain if I lie on it awkwardly.

Have you had the gene test? That might be another add to the debate if you were positive for the BRCA gene..

I hope you can get some help from others who have had mastectomy ops.

Kindest wishes,

Hi,

I had a mastectomy for Invasive Ductal Cancer and I have since asked about having the other breast removed, my reason for wanting the other breast removed is because my tumour 4CM plus 0.5CM wasn't picked up on the mammogram due to extremely dense breast tissue and obviously the other side is just as dense, so I worry same could happen again.  My Surgeon said "It would be considered over treatment".  I have small breasts also.  I didn't have a reconstruction, I look ok in a Post-Surgery Bra even without a prosthesis, the prosthesis they gave me to go in my Bra was too big and it was the smallest they had, so it looked odd! 

Post surgery I did ok and it wasn't nearly as bad as I had imagined, I managed with Paracetamol once I got home, I followed the exercises that they recommend, you should be given a leaflet about these, certainly helped a lot and I still do them now as I have developed some issues post Radiotherapy.   

Best Wishes. 

Hi

Welcome to the club none of us particularly wanted to join!!

Just wanted to query what you were told about implant size. I am an AA cup, had left mx with immediate implant recon. Took my surgeon a while to find one small enough, but he managed. It's marginally larger than the original, but not so much that I notice anymore.

I was offered DIEP (and LDflap at one point) which I rejected due to longer surgery and recovery time, as well as potential loss of muscle (I'm an archer). I did have to fight for the mx, as surgeon tried to talk me into lumpectomy. I'm small enough that there wouldn't have been much left after a 4cm lump!!!!

I had an ecg a few months ago - the nurse had to ask because she couldn't tell which was the bionic one!! The mammographer was also impressed.

In normal times, if you could show that there would be psychological distress and get that signed off on, then you could get a double mx here. But it isn't the norm, no.

Hang in there chick!!

Hugs xx 

Hi

Sorry you have been diagnosed with DCIS. I was diagnosed in January and had a mastectomy with 6 lymph nodes removed in March .I had an immediate implant placement. I am a 32c and am pleased with the implant. I was advised I could have further reconstruction at a later date but I think I will stick with the implant.You are young so a DIEP Reconstruction may be better for you as it looks very natural although this would be a lot longer operation and recovery period. This was pre covid lockdown. I recovered well and apart from an infection in my arm pit at 4 weeks post op was fully recovered by 6 weeks. Continued with exercises to get full movement in arm. I was advised to moisturize the scars after 6 weeks and now after 12 weeks they are improving well.

It is a lot to take in and I am sure you will make the right decision for you. It is your body  your decision.

Good luck

Linda x

Hi Sunshine143

I had my left side mastectomy on the 18th March. Went through so many discussions regarding recon etc. I actually went full circle with everything on offer and decided to join - what I affectionately call the ‘flat club’. I did ask whether I should have the double Mx to be on the safe side but was told it wasn’t necessary. There are so many things to think about and my brain was frazzled but I got there in the end. Like you I am small busted. Was advised against an implant due to having thin skin. I don’t have enough flesh for a DIEP  which then left me with TUG surgery. I was back exercising after 6 weeks and feel great. My only advice re your family would be just to let them give their opinion but you be strong to stick to yours. At the end of the day, it’s what you want. Good luck.

Hi , I had no choice, I had on the 19th March a left side mastectomy with no reconstruction due to the covid 19..  I am a 36F/Gcup I found it really hard in the beginning but I am getting used to it now...I am hoping when covid 19 is under control I can then have a reconstruction I have been looking at the Diep flap. My worry is that my other boob would have too be made smaller and lifted and whether they would do that because I havent had a conversation with anyone about reconstruction yet it's all in the air.....

Hi Dab

Try not to worry I’m sure once COVID is under control you will be able to discuss everything re recon. I was shown photos of larger busted ladies and their surgery was amazing. Some did have slight alterations to their other breast but all photos were good. Have you heard about the TUG (thigh) surgery? This is another option if you aren’t a good candidate for DIEP. Can you contact your clinical nurse for reassurance? 

Hi , I havent actually heard of the TUG surgery, so that is another option, I am not sure who my clinical nurse is , my whole team that I originally had, I havent seen since surgery.  They had to change them when they transferred my treatment to a different hospital because of covid, bloody nightmare covid.

I just hope it doesn't go on to long and they tell me it's too late to do a reconstruction that would be too much but I'm trying not to worry and just concentrating on doing my Chemotherapy first xx

Thank you so much for the warm welcome, lesleyhelen! I instantly felt so much better as soon as I joined this group - good to be with people who get it, although I wish none of us had to 'get it' in the first place.

Agree re: shutting down the family. Just need to find a way to let it roll off my shoulders. Luckily I can often blame the time difference for my unavailability, whether true or not!

From everything I've read so far, it sounds like a year is about right for the healing. Madness! I'm sorry to hear you still have some pain. I imagine with scar tissue there will always be something going on. My whole left side is already a mess from a previous slipped disc, so what's one more thing to add in now?! I'm having the genetic testing done next week, but unfortunately won't be likely to get the results back before my op. Should've had it done years ago because of my family history, tbh.

Lots of love and well wishes to you!

Hi peterawake - thanks so much for your message! I got the same response about it being over treatment, so I guess we just have to really stay on top of screening both sides going forward. Happy to hear you did well post-surgery - I've told my husband to stock up on paracetamol now in case they become scarce again!

I'm starting to think there may be a market for a business that specializes in small prosthesis and/or implants for smaller chested women undergoing reconstruction after breast cancer related surgery! Amazing that we aren't better catered for.

Sending you all the best <3