DCIS and recurrance

seeknpeace · Guest

Hi Dr. Leo.

I have gotten so much mixed information about dcis and spread. I would like to hear what you have to say.

I was dx on Jan 16 with dcis, high nuc grade 3, comedo subtype with extensive necrosis. It was est/pro neg. Everyone from the orig mammo ppl to the surgeon and then the doc and tech who performed the core needle assured me that I was wasting my time, that what I had was not cancer as it was well rounded and space apart. When it was found to be cancer and such aggressive cancer, the surgeon sent for all my film and was shocked to see the same appearance throughout my breast, very diffuse. So, lumpectomy was out and I had to have a mastectomy. Opted for a bilateral due to family history, having had a prior lumpectomy in the other breast (benign) and for symetry as I had a tram flap.

So, my question is this. My surgeon did perfom a sentinel node and removed four nodes, all negative. The sentinel fluid was injected at the site that was biopsied, but, of course not all the others, that were never biopsied to my knowledge. My concern is if the other areas in my breast were cancerous as well, and their node was not identified, I feel at risk due to the aggressive nature of my cancer. Also, the area that they identified as cancerous was 2.5 cm and that seems awfully large to me for dcis, and especially dcis that was not palpable. I am probably spelling these things wrong, I am tired and it is late.

I am worried as now I cannot have a mammo, and have no idea how I would know if there was a recurrance or metastasis. I have read that with dcis and with my kind of cancer there is a 6-10% chance of recurrance.

Can you comment to that and also to my concerns with the diffuse areas?

The other thing that I wonder about is the tram flap. I am not happy with the way that the appearance of it is developing. My plastics guy put a mesh screen in my lower abdomen, but, my tummy is rounding out more and more and I cannot do anything to stop it. I have not gained weight, I have lost and I am terrified that if I continue to lose I will look like a freak. With the "bundled" area beneath my reconstructed breasts where the muscles cross, and then this I hate my results. The ab muscle area, beneath my breasts, is protruding and shows in my clothes. I wanted the diep so so so badly but, no one in my area performs it. Do you know if I can have more surgery to fix this and can a tram flap be reversed or changed? I want my ab muscles back. I really hate this.

Jan Crying or Very sad

seekndrleo · Guest

Hey..I just want to be sure that Dr. Leo sees this and if he can shed light for me. I go for a spinal mri tomorrow due to my pain. Please answer me if you can Dr. Leo...

me too! · Guest

Good idea with that name!
I have been waiting all weekend for him to respond to my post. He came on and answered some and then left mine empty.
My doctor was supposed to call me right back today. It is now 9:30- what do you think my chances are of THAT?
I hope you have a good test tomorrow. Sorry I don't know anything about your kind of cancer. Mine may have spread to my pelvic bone - I have the report right infront of me- but NO DOCTOR to explain it to me.
Best of luck to you.
Martha Anne

stillseekndrleo · Guest

Hi, well, the name did not get me an answer either. Hey, Dr. Leo, please answer even if you tell me that you do not have one. I hate to be overlooked. This is a big deal to me

Good luck to you too. It is at best a terribly confusing and scary time for us. So yours has spread to the pelvic region for sure? How does that feel? I did have my test today and all that I know now is that the problem is in my spine. That is all that the tech would let out. I see the oncologist tomorrow and will find out. I bet that I have a bulging disk.

Good luck to you too. I hope that your doc called you back today. I am not sure why we are not being answered. Feels like the last one picked in dodge ball, huh? haha. Jan

leo · Site Admin Joined: 23 Sep 2004 Posts: 1574

Hello

Sorry it took me a while to answer your question. Things can get pretty busy here.

Anyway, let me start by stating that when you get a mastectomy, your whole breast is sent to pathology and examined under the microscope. So you would know if there were additional areas involved by cancer. DCIS is just the histological diagnosis, what the pathologist sees under the microscope. Your tumor size is considered a Tis, "is" meaning in situ, no positive lymphnodes, which puts you in a very comfortable position. Furthermore, as your entire breast tissue was removed, you do not need mammograms anymore. Your stage is called 0 per current literature.

Let me quote something here from uptodate:
[quote]More recently, the natural history of DCIS can be estimated from series of women with DCIS who have undergone BCT rather than mastectomy. Although these studies differ markedly in design, the following general conclusions can be drawn [5,18-31]:

At 12 to 15 years of follow-up, and regardless of histologic grade or the use of radiation therapy (RT), the majority of women with DCIS treated by breast conserving surgery do not suffer either a local or distant recurrence. Cause-specific survival rates range from 96 to 100 percent.

Approximately one-half of all recurrences are invasive, regardless of the type of adjuvant therapy (ie, RT, tamoxifen).

Nearly all patients with a SCAM recurrence, and a large proportion (>80 percent) of those who recur with invasive breast cancer survive their disease after subsequent treatment (usually mastectomy).[/quote]

About the TRAM, sometimes the end-result takes months to achieve. Unfortunately I have no experience with this, as this is not my area, so I can not offer much help :-/.

regards,
Leo
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Disclaimer: this information is for informational purposes only. It is not medical advice.

topdwn66 · New User Joined: 10 Nov 2004 Posts: 4

I am looking into that procedure now and i live in LI NY.. The problem that i have is that i had 3 c sections and the vessel that he needs for blood supply might have been cut.. Thus i could not have the diep.. where do u live?

seeknpeace · Guest

Hi

I am in NC. I would think that even though you have had the c sections, you could still do any of the procedures. What they want with the tram is to move the tissue with the muscle still attached to it so that the blood supply is maintained. I would think that the blood supply is still there, regardless of the prior surgeries.

But, I will say that if I had this to do over, I would have kept hunting til I found a doctor who did the DIEP. Losing my ab muscles is not a great thing. The first few months after the tram, everything was all smooth and flat, but, since you do not have muscles to hold that at bay, I began to develop a rounded lower tummy. And, I did have a mesh screen put in. That along with the bulge under my breasts make me feel so uncomfortable and like a freak. With teh DIEP I would have had the tummy tuck and would have my muscles and I would be so so so happy. As it is not, I just want to cry and wish that I could undo the tram. It is not so much that it is a horrible surgery, never mind the 8 hours of hell, and as many weeks of recovery, as no one told me that these two things would happen. Add to that the scarring and so forth, and it makes me sick and hate my body. I have met a woman whose dr. did hers differently. He cut her breasts up and down, and only on the bottom part. She did not lose feeling in her breast and her scars are a zillion times better than mine. And, her doc used double mesh. She will probably not have these things happening to her. It is bad enough to go through all this, but to look so awful to yourself afterwards is hard to take.

Good luck and please email me privately if you want...seeknpeace@aol.com

Jan

topdwn66 · New User Joined: 10 Nov 2004 Posts: 4

Jan I wrote to you privately but I just wanted to explain to anyone else reading this that the diep does not require muscle to be moved just a good source of blood supply.. There is a vessel that this doc uses that if it is cut by a c section then the diep can not be performed.. He wont know unless he goes in
I am meeting with him next week to find out my options..
Erica

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