How can this be?

Posted by whyme2023 @whyme2023, Jun 22, 2023

I was diagnosed with DCIS, Stage 0, ER/PR+, dense breasts - was told “treatable/curable”. Had 2 biopsies, an ultrasound and an MRI prior to surgery. Lumpectomy was done 2 weeks ago - carcinoma was MUCH larger than expected when it was removed (expected 1cm vs 6.5cm actually removed). 4 lymph nodes removed, all negative. Clear margins were NOT obtained. Surgeon is concerned because the MRI didn’t show the size of what was removed and is uncertain how to “follow me” in the future - for fear mammograms and MRIs will miss something in the future. Surgeon reviewed with her peer board and the majority think a mastectomy is the best route versus going back in for clear margins.
I can’t fathom why such a drastic step when I’m told my cancer is “treatable/curable”. I never imagined going that route and I’m still thinking do the 2nd surgery and hope for clear margins. If clear margins are obtained then we’d move to radiation and endocrine therapy. If clear margins aren’t obtained in 2nd surgery consider a 3rd for clear margins OR consider mastectomy.
I’m generally a step by step person - try things in a crawl, walk, run fashion - at this stage I’m thinking a mastectomy is a drastic step - I’d like to go the route of the 2nd surgery in an attempt for clear margins. HOWEVER, i would like to know what the data shows for how much a mastectomy reduces the chances of the cancer coming back.
Does anyone know where to find this data? Was/is anyone in this same predicament and how are you making your decision? If you’ve already decided how you’ll proceed, how did you arrive at this decision? If you’ve moved forward, how’s it going? I appreciate ALL feedback, as it’ll be good food for thought for me as I ultimately make the decision that works best for me.
Thanks in advance!!

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It is strange that it changed in size so drastically BUT since your breasts are dense they may not have been able to tell until the surgery. For example my tumor looked bigger but it was smaller with a lot of fat tissue around it (I think that is what it was called). As far as the mastectomy discuss if you can spare your nipple. I had stage 1 in both breasts and chose to do the mastectomy to get rid of the cancer once and for all and I was able to spare my nipple. I am very happy with the results. There is a scar under my breasts (where the underwire is). I still need to do the hormone therapy. Also find out your onco DX to see what the chance of reoccurrence is and what treatments you will need after as well. Good luck!

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@whyme2023
Welcome to Mayo Clinic Connect!
I’m sorry about the drastic change in size of tumor- must be very confusing.
I agree with others to get a second or third opinion- at the best available medical center.
I had IDC hormone negative 31 years ago. At that time the only recommendation I got was mastectomy and chemo- due to the size of the tumor. It may still be, I don’t know. I had a second opinion at Sloan- Kettering in NYC.
I wanted double mastectomy but that was not done then.
I was 48 with young children- I wanted the cancer gone.
So far so good.

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I am 44 and just had double mastectomy in April. I was told going into surgery my tumor was over 7 cm ( cm not mm so considered large) but after pathology it came back only 3.3 cm. I too wondered how the size was off as I had MRI. I immediately feared I could have had a lumptecomny vs mastectomy ( although surgeon says still would have recommended mastectomy.) But after all the research and hearing peoples stories ( as much as I have hated all this) I think the double mastectomy was a good decision to help prevent future occurrence. Otherwise w my age and not knowing where it came from ( BRCA/ gene test negative ) I think we have prevented alot of future fear, stress, and testing.

Even w the double mastectomy I still fear cancer will come back ( maybe in another form), but I will know I did everything I could to prevent it.

Good luck w your decision!

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@astaingegerdm

@whyme2023
Welcome to Mayo Clinic Connect!
I’m sorry about the drastic change in size of tumor- must be very confusing.
I agree with others to get a second or third opinion- at the best available medical center.
I had IDC hormone negative 31 years ago. At that time the only recommendation I got was mastectomy and chemo- due to the size of the tumor. It may still be, I don’t know. I had a second opinion at Sloan- Kettering in NYC.
I wanted double mastectomy but that was not done then.
I was 48 with young children- I wanted the cancer gone.
So far so good.

Jump to this post

Did you get mastectomy? Sorry didn’t
Understand.
Did you take tamoxifen after? I am 53.

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I can only comment on what I have had so far. Invasive ductal carcinoma plus DCIS
3 - 5 mm less than 1 cm
Grade 2-3
Stage like 0 to 1 Generally
ERt 96%
PR+ 46%
Her2 neg (simply hormone reactive positive)
Ki67 17%

Tx lumpectomy (clean margins) radiation (5 treatments at 6 Gray targeted).
Antiestrogen pill tamoxifen 20mg to start July 1?
No Genetic markers.

I would get many oppinions.
Just so you can feel comfortable about decisions. I got two three oppinions for radiation and am getting 4 for medical oncologist (hormone therapy).

I might another lumpectomy. I am a step by step girl myself. 53 yrs old.

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@salamander

I can only comment on what I have had so far. Invasive ductal carcinoma plus DCIS
3 - 5 mm less than 1 cm
Grade 2-3
Stage like 0 to 1 Generally
ERt 96%
PR+ 46%
Her2 neg (simply hormone reactive positive)
Ki67 17%

Tx lumpectomy (clean margins) radiation (5 treatments at 6 Gray targeted).
Antiestrogen pill tamoxifen 20mg to start July 1?
No Genetic markers.

I would get many oppinions.
Just so you can feel comfortable about decisions. I got two three oppinions for radiation and am getting 4 for medical oncologist (hormone therapy).

I might another lumpectomy. I am a step by step girl myself. 53 yrs old.

Jump to this post

Should say three
And
I would consider second lumpectomy I think.

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@salamander

Did you get mastectomy? Sorry didn’t
Understand.
Did you take tamoxifen after? I am 53.

Jump to this post

I had mastectomy of the affected breast.
I was HR negative, so no Tamoxifen.

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@jgallagher04921

I am 44 and just had double mastectomy in April. I was told going into surgery my tumor was over 7 cm ( cm not mm so considered large) but after pathology it came back only 3.3 cm. I too wondered how the size was off as I had MRI. I immediately feared I could have had a lumptecomny vs mastectomy ( although surgeon says still would have recommended mastectomy.) But after all the research and hearing peoples stories ( as much as I have hated all this) I think the double mastectomy was a good decision to help prevent future occurrence. Otherwise w my age and not knowing where it came from ( BRCA/ gene test negative ) I think we have prevented alot of future fear, stress, and testing.

Even w the double mastectomy I still fear cancer will come back ( maybe in another form), but I will know I did everything I could to prevent it.

Good luck w your decision!

Jump to this post

@jgallagher04921
With the actual size of the tumor I think you still would be recommended a mastectomy.
I was also BRCA negative with zero history of any cancer in my family.
I recently had testing for other mutations causing BC and was negative. My daughter tested positive for mutation CHEK2 that increases the risk of breast cancer - both men and women- and colon cancer.
She is now being closely monitored- no cancer yet.
Of course she has increased risk from me too.
I also have been anxious about cancer returning- finally relaxed a bit after 31 years.

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I had a lumpectomy 8x7x2 cm with three unclear margins. It was a larger area removed than my 2 and 4 mm initially diagnosed area but the MRI showed questionable area larger. My area was close to my nipple. My surgeon was agreeable to try the lumpectomy since the MRI questionable area might not have been DCIS and the area was on the top of the breast. Unfortunately, three unclear margins and the entire area was DCIS, grade 3. I had no choice but to do a mastectomy and was not able to spare the nipple. I chose double with silicone replacements same day. I now clear and do not require radiation or estrogen blocking therapy. Size of my breast after my lumpectomy went from a B cup to an A cup size. I am still healing. My other breast has tissue that required follow-ups in 6 months. Happy to have to for go mammograms, radiation and estrogen blocking therapy. I am considering sunflower tattoos for nipples after everything heals. 😉 Good luck in this journey. ( I am 65)

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@salamander

I can only comment on what I have had so far. Invasive ductal carcinoma plus DCIS
3 - 5 mm less than 1 cm
Grade 2-3
Stage like 0 to 1 Generally
ERt 96%
PR+ 46%
Her2 neg (simply hormone reactive positive)
Ki67 17%

Tx lumpectomy (clean margins) radiation (5 treatments at 6 Gray targeted).
Antiestrogen pill tamoxifen 20mg to start July 1?
No Genetic markers.

I would get many oppinions.
Just so you can feel comfortable about decisions. I got two three oppinions for radiation and am getting 4 for medical oncologist (hormone therapy).

I might another lumpectomy. I am a step by step girl myself. 53 yrs old.

Jump to this post

Thanks for your reply - I have had one surgery (lumpectomy) and margins were not clear. Currently I am opting for a 2nd surgery to hopefully get clear margins. I have not moved to the stage of radiation or pills yet due to the need for a 2nd surgery.
I too am a step by step person and want to take this slow since it is noninvasive and contained.
I am not ready to visit the mastectomy route. I feel my type of cancer and history affords me time to do the 2nd surgery and obtain a 2nd opinion. That is what I plan to do. 2nd surgery scheduled for 7/3.

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