How many surgeries for DCIS?

BostonLex

I had partial mastectomy last Wed.; got my path report today.

Among 6 parts of global re-excision, there is no DCIS identified in superior margin, inferior margin, lateral margin, deep margin and anterior margin. However, two of four slides for Medial margin have low DCIS.

My breast surgeon suggeted to have another partial mastectomy to remove more tissue in Medial direction.

This would be my 4th surgical procedures since March (core biopsy, excisional biopsy, partial mastectomey) and I'm really frastrated and tired of not knowing whether there is more DCIS somewhere else in my breast. My surgeon couldn't answer that, she can only say that we should take one step at a time. Can MRI tell the size of my DCIS?

I called Michael Lagios's office for a 2nd opinion. The consultation cost is within the range of my deductible for out network. Is it worth it?

mom3band1g

Don't know from personal experience about Dr Lagios but I do know MRI cannot always tell accurate size of DCIS.

CrunchyPoodleMama

I haven't consulted with Dr. Lagios (yet), but every person I've spoken with or heard of who have consulted with him, have said he is WELL worth it.

How was your DCIS originally detected (mammo, u/s or MRI)? Did you have a needle loc (wire placement) before your surgery? Usually that is what helps the surgeon know how far to cut in order to remove any remaining DCIS. With DCIS, it usually does take 2-3 surgeries to get it all. I just had a re-excision where my surgeon was finally able to get clear margins... if you count my two biopsies, that was my fourth surgical procedure too, and although it was certainly no picnic, I was definitely glad to do what had to be done to get all the DCIS out.

BostonLex

Thank you, mom3bandg1 and CrunchyPood for your quick reply!

They found two massses by MRI (mammo showed dense tissue). The MRI guided biopsy (steriotactic biopsy) showed ADH; the needle loc biopsy detected DCIS.

Does your doctor suggest you for radiation after this 4th procedure? My breast surgeon suspects that there could be DCIS somewhere else which warrants radiation.

CrunchyPoodleMama

Yes, unless you got a full mastectomy, radiation is pretty much always recommended afterward. (I'm not going to do it, but nearly everyone else does!)

A needle loc (different from a core biopsy) is done on the same day as surgery... it's where they insert wires into your boob (lovely, I know) then do a mammogram to make sure the wires have "bracketed" the entire suspicious area... is that what they did? The reason I ask is that that ensures the surgeon isn't going into it blindly but knows exactly how far to cut. If you didn't have that done before your first partial mastectomy, I would hope your surgeon would do it for the next one, to make sure he gets everything.

SJW1

BostonLex,

When I had a wide excision (after a stereotactic biopsy), they said that 5 out of 6 margins still had DCIS and recommended a mastectomy. I had Dr. Lagios review my pathology. He disagreed with my local pathologist. (From what I read, pathologists disagree at least 25 percent of the time). Because of him, I was not only able to avoid a mastectomy, but also radiation and tamoxifen.

He is not only a world renowned DCIS expert and pathologist, but also a kind and compassionate human being. I have recommended him to several women and they all are now enthusiastic members of the Dr. Lagios fan club.

He will review your pathology slides, send you a formal written report, and then do a 45 minute phone consult with you, in which he will tell you what your recurrence risk is and whether he recommends you have radiation or not. You can also ask him any other questions you might have. I can't say enough good things about him. He most definitely is worth it.

Please feel free to send me a private message if you would like to hear more about how he personally helped me or if you have any questions you need answered about Dr. Lagios.

I would be happy to help you in anyway I can.

Best wishes,

Sandie

imbell

Had a lumpectomy but the margins were not clear so had a mastectomy. To do radiation had to have the mastectomy. Sad to say I had a recurrence in the same spot as my initial diagnosis.

Kitchenwitch

BostonLex, I didn't count the stereotactic biopsy as a surgical procedure but maybe I will now! I mean, it was rough!

I had the biopsy, a lumpectomy and a re-excision and I'm going to have to have (at least) a second re-excision to get wider margins. I don't like that my BS said it was a matter of dirty margins after the 2nd surgery. The path report says the margins are small. So I'm resigned to another surgery. Even if that gets good margins, though, I'm going to need some plastic surgery of some kind - my breasts are already kind of different looking and I'm sad about that.

I too am thinking of consulting with Dr. Lagios. It IS expensive but I'd gladly pay $600 to be told not to have another surgery. It's definitely a roll of the dice. I doubt he'll say that, but honestly it doesn't seem like that much for more information on this poorly understood condition.

 After the re-excision I asked for an MRI and got it. It did not show anything specific and the recommendation was for me to repeat it in 6 months. So that's both good and bad, I guess. I am irritated beyond imagining at how DCIS is such a shoot-in-the-dark kind of affair.

I have times where I just think. I really have no idea how many more surgeries I am facing, or if I will be told by enough doctors I respect that I need a mastectomy (I have not been told that yet but I am afraid of it).

Best wishes,

Jill

BostonLex

Thank you all for sharing with me your experiences with this DCIS. They meant a lot to me!

My stereotactic biopsy was very rough, I had hematoma. I did have needle loc before my partial mastectomy. It looked like the MRI was not very reliable in my case. I had two masses on the 1st MRI, but one disappeared on the 2nd MRI when I had the stereotactic biopsy. I was told if it was DCIS, it would not disappear, so not to warry about the 2nd mass.

It looked like all five other parts of my breast tissue are completed clean (the path report did give me the number of slides for each part), but the medial part has positive margin (2 out of 4 slides). I felt the partial mastectomy took out a large chunk of tissue from a wrong area. Are there anyway/tool that can guide my surgeon to the right place the nex time? I'm frustrated with this blind approach, "let's take some more and see if we got them all"

SJW1

Kitchenwitch,

When I supposedly had postive margins after my lumpectomy and they wanted to do a mastectomy, before he even reviewed my pathology, Dr. Lagios suggested I have a RODEO MRI to find where my residual DCIS was located. This is a special type of MRI that is only used for breast imaging and is better at finding DCIS. It was invented by Dr. Steven Harms, one of the most well-known radiologists in the country. 

Dr. Lagios recommended this because he hoped that specifically locating any remaining DCIS, would allow a more tailored re-excision, rather than the typically "blind" re-excision that is often done. I had the RODEO MRI and although Dr. Harms found two suspicious areas and biopsied both, they were both benign. Since the rate of false negatives for the RODEO MRI is less than 1 percent, it was highly unlikely the RODEO MRI missed anything. 

Because of that, Dr. Lagios reveiwed my patholgy, disagreed with my local pathologist and said I had gotten good margins and did not need a mastectomy, radiation or tamoxifen.

I find this "blind" approach really frustrating too.

Please send me a private message if you would like to discuss anything about this more.

Sandie

PS If you have insurance, they usually will pay their share of Dr. Lagios' fees. At any rate I think you will find he is well worth it.

 

BostonLex

I decided to consult with Dr. Michael Lagios. I have to pay the fee out of my own packet since I haven't met my deductible yet.
My surgeon recommends radiation because she found the unexpected DCIS that are located in an unexpected area. I'm reluctant to have radiation and/or Tomaxifin too. I feel the long term side effects could outweigh the risk of recurrence for me. I'm hoping my consultation with Dr. Lagios will give me a peace of mind.

sweatyspice

Ah yes, the RODEO.  I looked into that when I had a fibroadenoma in 1993 and didn't want to have it surgically removed as was standard practice at the time, whether or not it was benign. 

I recall learning that RODEO could not tell whether or not something was malignant, or at least it couldn't tell whether my fibroadenoma was malignant - so it would not be a useful alternative to surgery.  I wonder what's different about it now, and how it differs from a "normal" MRI.

tovahsmom

I too had multiple surgeries for DCIS. I'm facing my 3rd surgery soon, but if I count biopsies as surgical procedures, I will be facing my 6th in less than a year.

As for MRIs, I had one including a MRI-guided biopsy. It turned out negative for DCIS at that particular site. I'm not sure that MRIs can tell the size of DCIS. I never heard of the RODEO though.