Hi Skincat,

Welcome to our community. I am sorry to hear of your diagnosis. I have had 2 bouts of breast cancer in the past 9 years. Initially I was diagnosed with a grade 1 mucinous cancer with no DCIS, but with fibrocytic changes in the background breast. I had a lumpectomy and took Tamoxifen for a year. Six months later I noticed another lump in the other breast. This was large, but fortunately benign.

Unfortunately, a year from my original operation, I found another lump in the original breast and wasn't so lucky. I had a second primary cancer of the same type and stage. There was no lymph node involvment. This time my surgeon suggested a mastectomy. I immediately asked him if he thought that it might be prudent to have a double mastectomy and he agreed.

I have never regretted this, as I feel that I have done all that I can to get rid of my cancer. I then took Letrozole for 6 years and, stopped taking this in July, 2019. Unfortunately, due to previous non-cancer related surgeries, I was not a suitable candidate for reconstruction. This hasn't held me back. I have an assortment of different prostheses, which  serve me for different purposes I stll go swimming and to the gym regularly.

Some surgeons are not keen to do a double mastectomy for low grade cancers, but this is your body, so, if this is what you'd prefer, stick to your guns.

I found the best way was to draw up a list of pros and cons for both operations and then a list of questions for my consultant. When I had all the details I needed, I was able to reach the decision that was right for me.

I hope that you can soon reach the one that is right for you too.

Please let us know what you eventually decide. We are always here for you.

Kind regards,

Jolamine xx

I was really interested in reading your story as I am just starting out and trying to understand things.  

I understand your thinking and wanting  to do as much as possible to prevent any further cancer.

Hi Sticky,

I felt much happier after I had my double mastectomy, as I felt that I had done all I could to get rid of the cancer.

Where are you with your diagnosis/treatment at the moment?

Kind regards,

Jolamine xx

Hi Skinkat

Im so sorry to hear of your diagnosis. I was diagnosed with high grade DCIS just over a year ago. I had lumpectomy and 15sessions of radiotherapy.

as I understand it the low grade DCIS can often be left as a ‘wait and see’ approach. Please remember DCIS is totally contained in the milk duct, is non invasive and not life threatening. There is an almost 100% survival rate after 10 years. I don’t understand your path results so can’t comment on that but I totally trusted my medical team and let myself be led by them.

i now consider myself cured. I’m on a patient led follow up programme which means help is always at the end of the phone if I feel the need. I also have the reassurance of annual mammograms for the next five years.

My surgeon said I would be cured after treatment and they don’t say that easily with cancer.

Like you I asked if a mastectomy would be better but they said absolutely not. I listened and trusted their recommendations. 

I hope this helps a little and wish you well for the future - Irene x

Hi  

I have a diagnosis from ultrasound scan initially then from a biopsy. I have one cancerous lump and 1 benign lump.   As yet I have not had any treatment and the waiting is awful.  Having a further biopsy on Wednesday to look at calcium . I know I will be having surgery but not yet sure what type. Given the calcium issue I am thinking I should have a mastectomy.  

Hi Jolamine

Thank you for your lengthy response. All makes total sense and you're right its my body so my choice should be respected. 

I met with the Oncoligist today. He has recommended 15 sessions of rads OR surgery, being a mastectomy. 

From day 1 I have been very pro mastectomy but am now in two minds as the Oncologist seems to be very pro radiotherapy.

I know my DCIS is low grade but there was 6cm of it and margins <1.5mm 

I'm desperately trying to research the outcomes of lumpectomy with rads vs mastectomy and there is so much conflicting information.

I'm scared of a recurrence and it being more aggressive if I dont choose  the right option.

I'm having an MRI tomorrow, this is post lumpectomy to see that everything has settled. I know I have a lot to think about.

I suppose if i go  with the rads, in the future if my fears are confirmed I can still have a mastectomy. 

My appt today seemed so rushed. I wasn't  informed of any of the side effects and  I had to ask about if I have rads, then I cant have them again on the same breast, should I ever need it! 

I know everyone is different ... its a mine field. But last week I was adamant if my choice, just feeling very confused after todays appt...

Xxx

Thank you Irene Xxx

I wish you well for the future too.

How big was your DCIS? Was it quite small? I see you  said it was high grade 

Hi Skinkat,

I am so sorry that your appointment was rushed today. This is why I always carry a list of questions with me. This way it is difficult for the surgeon to duck out of answering any of them, until I reach the bottom of my list.

Your oncologist should be the person to tell you the difference between the outcomes of lumpectomy with rads vs mastectomy. There is so much conflicting information about, but he should have the current figures to hand. You cannot really reach any decision without having accurate information on which to base your decision.

This is a difficult decision to reach and, you are bound to swing between both options. Why not write down a list of all your questions and ask him when you go back gor your MRI results. I hope that all goes well tomorrow. Yes, having a lumpectomy and rads just now, still leaves you with the chance of a mastectomy if needed at a later date.

Kind regards,

Jolamine xx