Hi Tinchytigger,

I note that this is your first visit to the forum and would like to welcome you to Cancer Chat. I am sorry to hear that you still have this uncertainty after having surgery. I was diagnosed with breast cancer 7 years ago and developed a second primary in the same breast the following year. I had a lumpectomy the first time followed by Tamoxifen. The next time I opted for a double mastectomy and this was followed by Letrozole, which I have just finished with.

After my first operation, Pathology claimed that a large enough margin had not been taken, but my surgeon assured me that he had realized this at the time and had taken another margin, which didn’t show up in Pathology. My cancer is a rare type which only affects 1% of people, and it is supposed to be a less aggressive strain than others. Why then did it return within a year? I suspect that my surgeon still hadn’t removed enough.

It may be a pain in the butt to have to return for another operation, but I would strongly advise you to do so, particularly if your surgeon is advising this. I was fortunate that my second diagnosis was still a primary, but it still meant that I had three miserable weeks where I expected a diagnoses of metastases.

To be honest, I didn’t find either operation as bad as I had expected them to be. I had to carry 2 shoulder bags to hold  my drains around for the first week when I had the double mastectomy. This saved me from having to carry a stand around with me all the time. I think that I found the double mastectomy less painful than the lumpectomy. I had bother for months after the lumpectomy, especially driving over speed bumps. I couldn’t have reconstruction due to scarring from previous surgery, so I still manage with prostheses – not ideal, but I can manage and even go swimming regularly.

Hopefully, someone who has had the same as you will come along shortly to advise you. It is a difficult one to call, and only you can make the final decision, but I hope that you make the right choice.

Do keep in touch and let us know how you get on. There is always someone here to talk to whenever you want.

Kind regards,

Jolamine xx

Hi there

This is my first time on this forum & after searching around for a while I found your post.  You may have stopped being online here as I can see it was 2017 when you were chatting.  

But just in case, I'll write anyway.  I have in the last month had a very similar diagnosis to you.

Mid range DCIS, so had a lumpectomy.  Margins were not clear unfortunately.  I am trying to work out whether to risk a secod lumpectomy, but surgeon thinks that might not be a good idea as am only an A cup.  So mastecomy possibly the better route.  Don't know which reconstruction route to go down.  Probably unfortunately not enough fat on tummy for a DIEP flap.

Would love your thoughts if you happen to come across this.  And hope all went really well for you!

Thank you x

Hi LaraH,

Tinchytigger's post was a while ago and, I hope that she will still reply. Just in case I thought that I would add my tuppence worth. I am so sorry to hear that you find yourself in this position. I had a similar experience 10 years ago. I was diagnosed with Pure Mucinous Breast Cancer.  My margins were not clear following a lumpectomy. My surgeon assured me that he had realised this at the time of surgery and removed another slither and that he was certain that all was clear. He assured me that, despite the pathology report, there was no need for any further surgery. I took Tamoxifen for a year after that.

Six months later I discovered a larger lump in my other breast, which was fortunately benign. Almost a year to the day after my original surgery, I discovered another lump in my original breast and this time I wasn't so lucky. I had a double mastectomy, followed by Letrozole for 6½ years. I stopped taking this in JUly 2017. Unfortunately, I couldn't have any reconstruction as a result of scarring for previous non-cancer-related surgery. 

It is impossible to make an informed decision about what procedure to have without full knowledge of the vagaries of cancer. There are so many factors that have to be taken into account, such as your age, general health, any other health conditions, type and grade of cancer, etc. Looking these procedures up on the internet doesn't alow for any of these factors, so you are probably best to be guided by your care team, who are already fully conversant with these. 

Could they bring a flap from your back instead of your tummy? Whatever decision you make, I hope that it is the right one for you. I have certainly never regretted mine.

Please keep in touch and let us know what choice you make. We are always here for you.

Kind regards,

Jolamine xx