Anyone else have 6cm plus of DCIS?

BWH5

Reikion.

Thank you for the reply. That is very reassuring. I am supposed to learn today when my surgery will be. They are trying to coordinate the breast surgeon and the plastic surgeon.

kmart

• I am 3x survivor
• the ist was ductal 5cm,
  • lumpectomy, chemo, radiation, tamoxifen
  • mild lymphedema
  • 20 yrs ago
• 2nd within few years was bladder
• 3rd is tubular breast cancer
• no reconstruction

• tamoxifen now blood in urine
• scheduled test & cystoscopy in 3 wks
• 1 1/2 yrs since surgery

1. I do not regret any of the above treatments, but I am starting to question the tamoxifen

BWH5

kmart

Do you question whether Tamoxifen works or the side effects that come with it?

Good luck on your test!

Thanks for the reply.

kmart

Thanks for your reply. Im questioning the side effects. In dealing with breast cancer & using Tamoxifen, I now have a secondary cancer. This is the 2nd time on tamoxifen with bladder cancer as the side effect.

CaliGirl43

yes I had bilateral breast cancer, 80mm of dcis and idc in 2 areas measuring 7mm each in right breast, left breast had 11.5mm of idc. My breast surgeon & plastic surgeon worked together to perform bilateral partial mastectomy. Clear margins on both sides.

AMLMom

Hi BWH5 and everyone else. Sorry that I didn’t respond earlier. I also chose lumpectomy with oncoplasty. Did you get your date BWH5? I too am waiting for the date that both plastic and breast surgeons are available. I am very nervous that I have made the wrong surgeon and there is a good chance that I will need a mastectomy anyways, but I don’t want to keep second-guessing myself. My husband is disappointed with my choice but supportive. Best wishes to you

BWH5

kmart.

I see why you do question the side effects.

That is terrible.

BWH5

Sitti

Clear margins!! That is awesome.

BWH5

AMLMom

No surgery date yet. They were supposed to let me know by Friday end of day but I never heard from them. I did not call them as I don't want them to think I was pushing them. I hope they call Monday.

There is a chance I too may have to have a MX after the Lumpectomy but I want the Lumpectomy and feel I have to take the chance or I would always regret it.

My husband too is hoping for the Lumpectomy. I am glad yours is supportive.

Best wishes to you as well.

HelloThere

I have 6cm "area of involvement" after MRI with contrast. Not sure if this changes the Dx from DCIS to something else. Original mammo and ultrasound radiologist thought 3.5 cm but possibly larger. They did find mutifocal comdeo on pathology. This is taking forever. Mammo was 12/18/18. And looks like first surgery opportunity is 2/15/19. Maybe further out depending on second opinion dr..

blah333

I did, but I did not get the full details. They told me it was 6cm over the phone, before I had an MRI. But after the MRI they said it was multi-focal. I was leaning towards mastectomy anyway, and removed the other one as well due to my mom having DCIS and then in the opposite breast 5 years later. My DCIS actually had a palpable lump, otherwise I wouldn't have gone to get a mammogram. I was 35. I waited 2.5 months between diagnosis and surgery. My pathology showed only DCIS and two clear nodes were taken. Although I have had swollen nodes since surgery and am now awaiting biopsy results on them. I'd be pissed if there was something missed. I was initially told DCIS "though there is an area of concern" but once my surgery date was scheduled I got assigned a new surgeon and that was never mentioned again. I think doctors may be a little to cavalier with DCIS but that is just my present worry/stress/biopsy waiting talking......

Personally I'd opt for the mastectomy. I didn't want to have radiation, hormonal drugs, and a mashed unrecognizable breast. I did not get reconstruction either. The idea of "clear margins" makes me nervous. They drew a circle on the area of the DCIS on me in pen, it was like a big bite that would be taken out of me (upper outer quadrant). I preferred flat nothing as my mutilation of choice. They assumed due to my age I'd go the lumpectomy route and had the lumpectomy brochures in my folder. I do have some light lymphedema/swelling issues but I'm glad I didn't have to endure radiation or side effects of drugs. Up until my first bout of swelling mastectomy only was "easy" and I felt like I was moving on with my life very soon after surgery.

Joy4Joy

I had a 8cm...which was really large~was told I had DCIS ..The tumor was so large I had no choice but to do the mastectomy, had two lymph nodes removed, was not able to keep the nipple, they put a expander in, had my surgery Nov 2018...All was non-maligmant, was happy about that, I will be having reconstruction the 28th of this month.....then one surgery after to reduce the size of my natural boob with a lift as well~I will have a nipple tattoo done at that time...Hope this helps....Good Luck to you

BWH5

Thank you for the replies.

I had my surgery 2/5/19. Lumpectomy with oncoplastic reconstruction on left and oncoplastic reduction on right side.

Pathology report said 4.5cm removed. No invasive found. Five hour surgery. No drains. Left hospital that evening.

When DX they were calling for a MX but I pushed for a LX and am glad I did. The oncoplastic surgery was great as they xrayed the removed tissue while I was under and saw margins were not clear so they went back in and removed more. With oncoplastic surgery if clear margins are not achieved masectomy is the only option.

It took me two months to decide what to do. I am so glad I did not rush into it. In that time the dcis did not spread.

Good luck to everyone.

LAstar

That's great news, BWH5! Feeling relieved for you!!!

charlie1966

Hello,

I have been just diagnosed with DCIS and not sure how to proceed. I have been given the option of a lumpectomy with 6 weeks of radiation treatment and taking Arimidex for 10 years. Other option is mastectomy with implants or using belly fat. Looking for pros & cons on both options. Worried on appearance, I know, very shall

LAstar

Hi, charlie1966 -- definitely check out the pinned post at the top of the DCIS community page called "lumpectomy vs mastectomy - why did you choose your route? " You will want to gather all the details about your particular diagnosis and determine which approach makes the best sense for you. It's a tough decision (although mine was ultimately made for me). Best wishes!

charlie1966

LAstar thank you will check that out

Best wishes to you

BWH5

Charlie

What is your diagnosis? Size, grade, etc?

Take your time and explore all your options until you feel comfortable with your decision. It took me two months. I am glad I waited. I felt pushed at times to decide but I kept putting them off. And in that time my dcis did not grow. I made sure to ask them at my Pre op appt.

I am so glad I pushed for a lumpectomy. Did they mention oncoplastic reconstruction?

Good luck.

BWH5

LaStar

Thanks!

Also do you know how you add your surgery to the tag below your posts? Thanks

LAstar

Go to My Profile then My Diagnoses.

charlie1966

BWH5 I have been diagnosed with DCIS left breast stage 0 3cm. I am researching all option I do not know what onocloplastic reconstruction is - but I will be sure to look it up. My surgeon advised that there is no rush to take time to explore all option, but I should not wait too long. Any advise you have would be appreciated.

Thanks

Meesha1978

Hello All,

I was diagnosed with DCIS, grade 1 in January after my very first “baseline” mammogram. My doctor in my hometown originally said it was small and would likely be a lumpectomy. I went to MD Anderson and after extensive imaging, they staged it at Stage 0 (no involvement of the chest wall and lymph nodes appear normal on ultrasound), but because it is so diffuse (7.8x7.6x6cm) and the location of the abnormal cells, lumpectomy was not an option to get clear margins. I was heartbroken.

MX is planned for March 22. Reconstruction will be delayed until May, at which point I will get a tissue expander.

I’m worried that they will find IDC hiding in all those microcalcifications. The radiation oncologist said I would probably never see him again as radiation isn’t indicated with a mx. And the medical oncologist said I would not need chemo either, even if they found a little bit of IDC. I will be on tamoxifen starting in April.

It’s very overwhelming at times. Sending positive thoughts to all my BC siblings. The physical healing will occur, but mentally/emotionally, it’s very challenging.

blah333

Meesha1978

I don't think that's how it works..... calcifications (associated with DCIS) are the abnormal/dead(?) cells shed by cancer cells, like their garbage/litter (if I understand it correctly. It's in the ducts. So IDC wouldn't be in the calcifications. You should have gotten your pathology report back. They cut the breast in to many slices and look at each one. Calcifications are just evidence that a cancerous state may exist. Something invasive wouldn't be hiding in them.


I have a similar situation as you except my DCIS was higher grade, and I got a bilateral mastectomy. Nobody mentioned Tamoxifen to me. Are they asking you to take it because you have kept your other breast? How old are you? I am 35. I felt good after my surgery but have also worried about similar things, margins etc.. especially when I found my pathology report and re-read it and had some other conditions like ADH and fibroedemas etc they never mentioned to me. So much was going on in my boob and I had NO IDEA!

Meesha1978

Hi blah,

The only evidence of the DCIS is the microcalcs showing up on mammo and the biopsy that proved they were DCIS. Only a small area was biopsied, so I wonder if there is IDC elsewhere that hasn’t been found yet. MX in less than two weeks. I’m ready to get this out of my body.

I am 40 years old. No family history and this was my first mammo. The tamoxifen is prophylaxis for my other breast.

What was your healing like? I’m currently looking at post-mx camisoles, forms, and bras for those few months that I will be flat. Did you do reconstruction?

Thanks for any info

blah333

Hello, I saw your first post was from Jan? so I thought maybe by now you had your surgery. So you will have to wait for your report to come back to be sure nothing is invasive. It's likely you'll be fine... there could be a micro invasion etc but if you are removing the whole breast and your nodes are fine - that's all you need is the mastectomy in most cases. My 6cm DCIS was also multifocal. If I were you I would focus on enjoying your breast for the last 2 weeks of having it, and focus on surgery recovery vs. worry about invasiveness. Make sure you have good food to eat and vitamins for your recovery, good movies to watch etc.

I did not have recon and recovery was much easier than expected. People complain about drains but I must have amnesia because that was such a small fraction of my life. By the 1 month mark I felt pretty fine. I removed both breasts. It still causes health anxiety in the back of my mind and losing 2 nodes has impaired me surprisingly (I can't wear a backpack, I have periodic/light swelling, mild stage 0 lymphedema I think) but other than that it was not as bad as expected. I did not bother with camisoles (I hate the small straps) but wore an XS sports bra for a few months for extra 'protection' and because it was cold. I need a swimsuit still but other than that haven't bothered with an post-mastectomy clothes or bras.

LAstar

blah333, Tamoxifen would not be recommended for you because you had BMX and Tamoxifen is used to protect the non-cancer breast. Same for me -- no chemo, rads, or AIs.

I had 2 nodes removed initially and another at a later reconstructive surgery and also have Stage 0 LE. I hate it! Backpacks are a problem, as are bug bites, hangnails, sunburns, lifting heavy things, air travel, & bumping into things. Lymphatic drainage massage and sleeves have helped a lot, but it's a condition that requires management. Meesha1978, consider talking with your surgeon about finding and marking the lymph nodes without removing them. Then if something invasive is found (unlikely!) in your pathology report, the nodes can be easily located later. If nothing is found, then your lymph system is still intact. Read more about it here: https://pinklotus.com/powerup/breastcancer101/prop...

Meesha1978, I think it's great that you are waiting a while to begin reconstruction. It was the most problematic aspect of my diagnosis and treatment, and ended up taking a long time with the surgical recovery, a complication, and re-do. My results look great but I still question if it was worth it. It's hard not to worry about your pathology report, but there are many of us with large areas of DCIS but no invasive component. I just celebrated my 7-year diagnosis anniversary. I wish I could say I've stopped thinking about it, but it does enter my mind much less frequently.

Meesha1978

Hi blah,

I am now five days post-mastectomy (left side). It has not been too bad. The only part that is uncomfortable is the drain site exit. I'm managing with one Tylenol every 5-6 hours and driving again. I am returning to work a week earlier than originally planned. The surgeon got clear margins and didn't have to take any chest muscle. The skin is numb but the muscle underneath still feels. She also removed two nodes. She does not expect to find anything in the nodes. I feel very fortunate.

Expander placement will be a separate surgery in May as I was at risk for complications to do both at the same time. It's a little strange to look at myself in the mirror, but emotionally I'm ok. I was at peace with losing my breast before surgery.

Thank you for your response and insight into the experience. I wish the best for yiu

cb2

Hi Ladies,

I am struggling with the decision between LX and MX as well. I have 5.6x2.9x1.9 cms of DCIS (3 biopsies) in my right breast. Because of my age (39yrs), small breast size (36B) and size of DCIS both surgical oncologists I consulted with recommended MX.

I am not sure if I'm a candidate for direct to implant because the surgeon said they would remove the nipple in the MX.

I'm very confused. I think I prefer the LX+Rad option but I am fearful that the recurrence risk is slightly higher than in MX. Want to make the best treatment choice and minimize the number of surgeries I have to go in for. I am less worried about the cosmetic impact.

Meesha1978

Hello cb2,

My DCIS was quite large (7.8x7.6x6cm) and as such, my surgeon recommended mastectomy. She was certain she could not get clear margins with lumpectomy and that meant more surgeries. I am now just over 3 weeks post-mx and I know I made the right decision. She was able to get widely clear margins, so no radiation, and it was pure DCIS and nothing in the nodes, so no chemo.

Initially I struggled with losing my breast and pushed for lumpectomy. The more research I did, the more I realized that mx was the best choice for me and my situation. I was at peace with it before surgery and felt amazing afterwards.

I hope you are able to acquire some peace on your decision as well, whichever that may be for you. It is ok to take some time to consider your options. It was two months from diagnosis to mx for me. Take your time, talk to your doctor. I wish you the brst

Davis1

I was Dx with a 7x7 cm had lumpectomy in February. My margins were not clear my Dr. wants to do a complete breast removal of the left side.