Lumpectomy + radiation or mastectomy for DCIS?

Hi StayingPositive2023

Welcome to the forum and sorry to hear that you have been diagnosed with DCIS.  While I didn't have a choice between a lumpectomy or a mastectomy, I had a lumpectomy which I don't regret, though if my surgeon had felt it necessary to take the affected breast I'd have had no problem with that either, anything to make me better would do.  While a mastectomy lessens the chances of the cancer coming back it doesn't prevent it from happening again as there is still some breast tissue left after the mastectomy. While it's completely up to you what operation you want to have, be guided by your surgeon as they know what they're doing.

Wishing you the best of luck with your operation whatever you decide to do.

Best wishes

Daisy53

Hello StayingPositive2023,

I was diagnosed in October, DCIS and IDC in my right breast. I had a lumpectomy and sentinel lymph node removal 18 days ago.

Received my results last Wednesday, 15mm IDC removed and 25mm DCIS, which came as a shock, because when I was first diagnosed the scan showed that it was only 8mm.

Unfortunately, the margins around the DCIS were not clear and I am having a second op in January. I was never offered a mastectomy and although I did mention it to the breast surgeon, he said lumpectomy was the way forward for me. 

Will have to wait now until after my 2nd op to find out what my treatment plan will be. Once you have a proper diagnosis and get to see your breast surgeon, you can ask all the questions you feel are necessary. I wrote down the questions I wanted to ask and my husband jotted down the surgeons replies. 

Good luck I hope everything goes well for you xx

Thanks so much for taking the time to respond and share, Daisy53.

If you don't mind, can I ask you what the recovery was like after the lumpectomy? I have two young kids so it would be helpful to know how long you were really bed-bound for, and before you could e.g. lift things or be more active. Totally understand it is very different from case to case of course, but I do find it helpful to get actual first-hand accounts. 

Did you have any radiation after the lumpectomy? 

Thanks again! 

Hi Valleyside, and thanks so much for sharing!

It's interesting to hear that the initial diagnosis was quite different to what was ultimately found. That is currently my fear, that it may be much worse than what the current diagnostics are showing and that therefore more urgency would be appropriate, and a mastectomy maybe called for.

I find it so hard to live with that 'well we think it's this but there is a significant chance that actually it's more', which is why I think a mastectomy might give me more peace of mind. I really hate the thought of having an operation, and then another, and potentially another, or ending up with a mastectomy after all, all the while being afraid of spread.... how do you deal with that aspect of things? I know I'm focusing on potential negatives rather than the actual diagnosis, and it's really unhelpful but I can't seem to get out of that loop of thought! :( 

Hi StayingPositive2023,

I felt the same way you do, that they were giving with one hand and taking away with the other. I still have negative thoughts and have good and bad days.

Just for your info as you asked on  here, I was in bed after the lumpectomy for a few days. I did get up now and again, but felt tired all the time. I felt slightly more active after about 5 days, but they advise you not to lift anything heavy or to put too much strain on yourself, no hoovering or housework. To be honest the lumpectomy did not give me any problem, it was the sentinel lymph node removal that has remained really uncomfortable and sore. 

It’s worth doing the exercises they give in the first couple of days, as it really does help with movement and getting you back to being active again. If you feel that mastectomy is the way forward for you then stick to your guns.

My sisters mother in law had a double mastectomy 60 years ago when she was 33, and never had a reconstruction. She had four young children at the time and treatment back then was limited. She is now 93 and still with us and enjoying life, travels abroad on her own for holidays and really is amazing. 

Please let us know how you get on xx 

Thanks so much for all that.

I'm sure it's hard to accept that you have to go in for another operation. It's hard enough coming to terms with what they say is going to happen, only to have it all thrown out of the window again. So sorry!

Thanks for sharing your recovery, that's really helpful to understand. And also your sister's MIL's story! What a kick-ass lady!! Super inspirational. 

I should find out more about the extent of the DCIS tomorrow and then have an appointment to discuss on Friday, so will be able to report back then. :)  Best of luck to you too for the next op. I hope you can enjoy the Christmas period as hopefully welcome distraction until then. 

Good luck with the appointment and have a good Christmas and enjoy it xx

Hi StayingPositive2023

I was only bedbound for two days, the day of the operation and the day after. I was back walking two days after the operation.  I was advised not to lift anything heavy for about 6 weeks after the op. 

I did.  I had 15 days of radiation therapy 5 days a week over a three week period.  The radiotherapy went well.  The only side effects I had were a slight burn on my chest and a sore throat towards the end of the radiotherapy.

Daisy53

Wow, that's great! Sounds like you had a very smooth recovery :) super to hear. Thanks.

Hello StayingPositive2023, Sorry that you are dealing with your breast cancer diagnosis.  It is a real shocker snd takes some adjustment.  I was diagnosed with DCIS in right breast.  Saw microcalcifications on mammogram and it was stereotactic biopsy that diagnosed me. Plan was lumpectomy followed by radiation and then aromatase inhibitor as estrogen positive 100%.  Well I was ready to do it after feeling sad for awhile.  But breast surgeon wanted me to have ultrasound and MRI on both breasts.  Ultrasound was negative so off to MRI.  Saw 2 spots on left breast and another area on right breast.  So I was to have MRI biopsy but was told while I was on the table for left side that couldn’t do it as breast too small.  I have 34A and he told me the needle would have gone in one side and out the other so he made an incision and put a clip in so surgeon could do an open biopsy.  Surgeon wanted to do both surgeries same day but I told him that I wanted to know what I had in left breast first.  Well it was stage 1a Estrogen and progesterone positive 3mm tumor with 6 mm DCIS.  Surgeon got it all so no more surgery needed on it.  But I was devastated as I thought of removing both and have no radiation and no hormone therapy. I was so emotional that I couldn’t think straight.  My surgeon was recommending lumpectomy right breast with radiation.  So after a lot of thinking and trying not to let my emotions get in the way I had the lumpectomy on the right side too.  I also talked to radiation oncologist as my breast surgeon was trying to help me.  
My surgeries were not difficult recovery.  I was in good shape as bicycling often and eat plant based so think it helped.  I took one pain pill the night after surgery but nothing after. I was cooking and up and about the next day too.  Everyone is different but I went with how I felt.  My little breasts had so many needles, clips , squishing done that this incision was just another thing.  I am all done with everything except on hormone treatment but have itching from the drug so off it for 2 weeks and then another drug, I think.  
I had first surgery at 72 and other one at 73.  
I am glad now that I had the option of lumpectomy as with small breasts if the DCIS would have been larger I may have not had that option. 
Take care snd you should do well as you are running around after 2 little ones.  Sorry for being so long winded.  Merry Christmas.

BARBARA