Looking for those with similar DCIS diagnosis

diapermaker64

I have DCIS, high grade{Van Nuys}, grade 3/3, comedocarcinoma ER-PR-,  and am looking to compare treatment and follow-up with others with same diagnosis. I had two lumpectomies, 33 Rads.  I had a follow up with my surgeon and mamogram at 6 mos. and again at 1 yr, both were normal check ups. Never have had any blood work since diagnosis.After the last check-up Doc says I do not need to come back for one year. This just makes me a little nervous as I have read that most survivors get check ups at least every 6mos. for two years. I have only seen an oncologist once since diagnosis . I do, however, see my onc. surgeon during my check-ups. Also, everything I read about DCIS is that it is found by Mamograms and not felt by the patient.  I found mine on examining myself. It was a small hard nodule.  Has anyone else felt theirs before mamogram? I feel I dropped the ball when I didn't get a second opinion and now I just feel uneasy about not getting enough information during the coarse of my cancer treatment.

kerkle

I am surprised to heard that you "felt" your DCIS. I was always under the impression that DCIS was not a lump and that it is microcalcifictions only seenon a mammogram. It is the earliest from of BC and the cells do not have the gnetic make-up (the "key") to travel outside the milk ducts. It is never too late to get a second opinion. If I were you I would do that asap. I myself had a double matectomy with partial reconstruction, then radiation for 6 weeks and now I am awaiting my breast reconstruction operation and having a hysterectomy at the same time. Good luck with everything and go find that second opinion!

Jelson

Not all DCIS presents with calcifications which is what is most easily seen on mammography. I had a mammogram in August 08- everything was fine and then in Sept felt something - not even to the touch, I could just lie still in bed and one breast felt different than the other!!! I went to my primary care doctor and he could feel a lump. An enlarged duct showed up on ultra sound - a breast surgeon felt nothing, it was not until a second ultrasound, when the duct was clogged that the breast surgeon recommended a needle/core biopsy exactly at the site my pc had id'ed. So yes, DCIS can present as a lump. In fact, I believe it is the higher grades that are more likely to do so. Other types are more diffuse, the cancer cells are spread out with gaps over a wider area.   I had an MRI AFTER my excisional biopsy and will be getting another - a year later - as a second monitoring method, in addition to an annual mammogram (6 months apart).I would assume you are not being monitored by a medical oncologist because you aren't on tamoxifen. I am on tamoxifen and see a medical oncologist and the radiology oncologist, who continues to monitor me, ordered the mri however, I am not being followed by the breast surgeon. Again, I am just reaching my first anniversary. I believe the visits will space out as time goes on, I would ask your breast surgeon about an MRI.

good luck

Julie E

mom3band1g

I found mine too!  I had a lump and almost none of mine showed up on mammo, ultrasound or MRI.  What we thought was a 1cm lump turned out to be 6.5 cm of DCIS!

redsox

Nipple discharge led to finding mine with an excisional biopsy -- after a negative mammogram, inconclusive ultrasound, and negative core biopsy.  Although mammograms are the most common first sign of DCIS, the symptom of discharge is not unusual.  Practically all women under 40 diagnosed with DCIS found it because of a lump or symptoms (along with some of us over 40).

CTMOM1234

diapermaker - It's standard care to have 6 months mammos for the first year, and if all is normal, to go back to the regular annual mammo. But definitely worth asking dr. if you can have 2x/year.

 In fact, I even like the idea of that for the first 3 years, if my dr and insurance will allow it. Especially after having rads, which I'm told makes it even more to challenging to read mammos on top of the fact that I apparently had dense breast tissue even before my lumpectomy.

My DCIS was only found from the routine mammogram, and I had no idea one was ever able to feel DCIS, so this thread is eye-opening. It didn't show up on ultrasound or mri, so I'm a big fan of early detection via mammography.

Mantra

My DCIS was only discovered during my annual mammogram. I did not have a lump. My diagnosis is similar to yours. DCIS, grade 3, comedo necrosis, ER/PR negative. However, I chose a different route and had a mastectomy.

I'm only 6 months post op and I have my first post op appointment next week so I'll know more at that time regarding follow up etc, My doctor insists on mammos even after mastectomy . . . I know that is very unusual but I'm okay with it.

diapermaker64

I'm wondering if I can just get the slildes from the biopsies and send it to another lab for an opion , or would I have to make an apoitment with a doctor first? I live in the St. Louis area so probably need to go elsewhere .  Any suggestions?

diapermaker64

You would think that if you have a lump and it's said to be DCIS that it would be more advanced than just calcifications but apparently not because my diagnosis did not have any microinvasion.

diapermaker64

How does one have a mamogram after a mastecomy? I am still really sore from lymphedma in my breast but the insisted on a mamogram instead of MRI, would have rather had the MRI.

JAT

Diapermaker:

    You most certainly can have your slides sent to another pathologist for a second opinion. They belong to you.  I had my slides sent to two other hospitals-- Johns Hopkins and Sloan Kettering-- just for peace of mind (georgetown did my surgery).  My insurance covered one, but the other I paid out of pocket (about $270).

You just call the pathology dept. where you had the biopsy done and they'll tell you how to do it (paperwork and fees)-- then they send out the slides-- the other lab will return the slides within 30 days (but always double check that they were sent back).  All 3 reports were the same, in my case.  I also made an appointment for a second opinion with a  medical oncologist to review treatment options.-- Julie

diapermaker64

Julie, thanks for the info. I'll get that done right away,just need to figure out what hospital would be best.  Any suggestions on which one would be best for DCIS. Terri

JAT

Hi Again--  I used Sloan Kettering because everyone says they are the best, but there is a person on this board who insists on Michael Lagios because he is THE expert on DCIS-- he's in California-- he has a website www.breastcancerconsultdr.com.   I think any of these, or MD Anderson, will be useful.  I then brought the second opinion to my BS and to my oncologist-- just to discuss the results.  --Julie

diapermaker64

Thanks Julie, I will contact my insurance co. to see if they will pay.  The Dr. in California charges 560.00 for the evaluation but he sounds good.

Hindsfeet

Actually, my first bc surgeon said that she removed a small lump where the dcis was found. Who knows? How do you know what are lumps and cysts? I have so many lumps. The doc said that they are probably beneign.

I read that dcis doesn't happen over night. Sometimes they don't show up on mammo's ... epecially very early dcis. I had califications only in one area that showed up on a mammo, but in the final dx high grade dcis cells were found throughout the tissue removed...which did not show up on the mammogram or mri.

Last December was my first year cancer free. My bc surgeon recommended that I stay on the 6 month screening program for 2 years. One mri and a mammogram per year. I do think after the second year being cancer free, she said that it would be ok to go back to the once a year mammogram screening.

Janets1

I haven't been on the board for quite a while, but checked in this evening and saw this thread.

I had surgery plus re-excision, clea, wide margins and 28 rad treatments, finished December 29th. My radiation oncologist checks on my general health every couple months and has not ordered a mammogram until my next annual which would be September (one year since my diagnosis). In addition, he does not routinely order MRI's as he believes they cause too many false-negatives. I'm feeling great and just going along with my daily life, trying not to think about my future mammogram - other than the fact that I still have breast tenderness and am not looking forward to my treated breast being compressed!!!

diapermaker64

Janet, Glad to hear you're coming along OK since your treatment.  I am still sore and having trouble with lymphedma in my breast and upper arm.  I get therapy treatments and have to wear a compression garment with extra padding on the scar, which has a lot of scar tissue .  Therapist says this is partly the cause of the swelling. Looks like I can forget the feminine bras because when I try to wear theose the swelling gets worse. Also still fatugue is an issue for me.Trust me the mamo doesn't feel very good but whatever it takes to keep a check on things will have to be tolerated.