dcis grade 3

Fingersntoes

I was resently diagnosed with dcis.  This is what the path report said...dcis nuclear grade 3 with apocrine features, solid and cribiform patterns with central comedo necrosis.  I have had no treatment yet, still in the what-to-do-now stage.  I've met with a surgeon, radiation onc, and plastic surgeon.  Surgeon measured 4cm and recommended lumpectomy with rad. or mastectomy.  Rad onc. said I would do fine with rad with some side effects (skin irritation, tan & hardening).  Plastic surgeon painted another picture.  She is very against rad because she treats the patients with the bad reactions. 

I welcome any suggestions from anyone who has had similar diagnosis with either treatment.

Jelson

Fingersntoes

I had the common treatment for DCIS grade 3 er+: lumpectomy, radiation and tamoxifen and I did and am doing fine. While the plastic surgeon is "very against" rads, they are sometimes necessary even with a mastectomy if the margins are not clear. What did the plastic surgeon advise as an alternative? 

Julie E

linfer7358

Julie E,

   I also have DCIS..just done with the Lumpectomy 4 days ago still in recovery..Just would like too to know how did your treatment been..We have very same path dx..My oncologist recomended for rads and probably tamoxifen. But dont know yet till i see the surgeon on how did the surgery went if it is clear or not..So you're in on tamoxifen now right?..How did the radiation went for you?..am a little bit apprehensive about the side effect..Did you have any problem with the rads?..I would appreciate if you could give me some advice with regards to all these procedures..Thanks!

helenap

i too had dcis grade 3, comedo cells, had lump, mammosite because of small size and age.. did fine. also on tam...... research well, and feel comfortable with your procedure

RachelA44

Hello,

I too have recently been diagnosed with High Grade DCIS.  I had a 3cm lumpectomy, but margins were positive.  I then had an MRI to determine the extent of the DCIS before further surgery. (I do wonder why an MRI isn't offered before the first surgery..) I return next week for further surgery and hopefully clear margins.  I have been told that I will need 5 weeks of radiotherapy, but have not had the opportunity to meet with an oncologist or any other doctor.  I live in a rural area and will have to relocate for treatment.  With four children, I am trying to find out how others cope. 

speech529

I was diagnosed with DCIS Grade 3 with comedonecrosis.  I believe my lesion was 5 cm, very small breast with 1 mm margins on lumpectomy.  I opted for unilateral mx with immediate reconstruction (nipple sparing with alloderm sling, silicone implant) rather than more excision and rads.   I am very happy with my outcome.  I had several months to make my decision and I consulted different doctors, also.

It's very personal, based on your history and physical situation.  I did not need rads after surgery and I am not taking any chemoprevention (tamoxifen or raloxifene).  One onc recommended another left it up to me.  

good luck!

mom3band1g

rachelA44 - I have 4 kids as well and finished my rads over the summer.  I started the week before the kids got out for summer break (3 of the 4 are school age) and had to do the rest with them home.  It was hard.  Some days my dh could keep them, some days my neighbor watched them and some days they had to go with me.  The treatments themselves are very quick.  The fatigue didn't hit me until the end.  I am now 3 1/2 months out and feeling about 90% back to normal.  Hard to days what is rads fatigue and what is 4 kids fatigue!  My kids are 11,9,7, and 4.  Best of luck to you,

Debbs

Hi,

I had the same diagnosis and underwent a lumpectomy which didn't give clear margins so had second surgery two weeks later.

This was followed by daily radio for 5 weeks.  The radio treatment is easy, most of the time spent is lining you up on the bed with approx 5 mins of actual treatment.  Tiredness and total fatigue kicked in three ways after treatment started (at first I joked they had given me a placebo as I was sailing through with no side effects) with very bad burning the week after which lasted approx. 3 weeks.  Was the whole process pleasant, most certainly not :  would I have surgery again over the side effects of radio, yes I would as the lumpectomy was a breeze:  would I have missed this element of treatment - absolutely not.  First surgery 8th May, second surgery 22nd May, radio started 1st July. Am happily back at work, had a check up and scan 3 days ago all clear.  I honestly think you have to give yourself the very best chance possible and radio is proven to reduce the risk of any nasties returning. 

I wish you lots of luck with whatever you decide, please keep us posted.

Debs

Jelson

Linfer7538-

28/8boosts radiation. experience similar to Layne157's except the tan only lasted a year. also left side. I think women are now advised to hold their breath during the actual radiation zap (seconds) as a protection against the rads hitting the heart - brilliant!!!  I would have radiation in the morning and then go kayaking with my husband - meaning alot of upper body motion almost every day.  I slathered my breast with calendula cream at night after my shower and then early morning at least 3 hours before treatment)  I used 100% aloe vera gel which I brought to treatment and slathered on after treatment when I was getting back into my street clothes and then at least one time during the day. the boosts left the most redness. I was 59 when I started tamoxifen and had been having hot flashes for a few years - they had changed over time, with the season, whatever. I can't say what the tamoxifen has changed with regards to hotflashes. My endometrial lining is being watched via transvaginal ultrasound and I am a little "wetter" down there, which is a good thing!!! 

if you use the search function at the top of the discussion board and look for van nuys, you will find many threads in which the need for radiation is discussed. Dr Silverstein developed the Van Nuys Prognostic Index (VNPI) which can be used to determine whether radiation is necessary after lumpectomy for DCIS. The variables are woman's age, size and grade of tumor and margins.  I expect Swalters will chime in on this thread to mention Dr. Lagios who provides second opinions to DCIS patients on the questions of whether radiation is necessary. 

There is another thread on the DCIS board about radiation after mastectomy. Sometimes radiation is recommended for women who had mastectomies even when their initial diagnosis was DCIS. I strongly recommend looking through the various threads on the DCIS board here, posts by Beesie are especially informative.

hugs to all!

Julie E

SJW1

Fingerntoes,

Since DCIS is non-invasive cancer, you have time to research and make sure you are comfortable with whatever you choose. I would advise you to get a 2nd pathology opinion from an expert in the field who reviews at least 200 pathology patients slides per year, before you do anything.

I had Dr. Michael Lagios, a world renowned DCIS expert and pathologist with whom anyone can consult, review my slides. When he disagreed with my local pathologists, it meant that not only did I not need a mastectomy, but could also omit radiation and tamoxifen. He used the Van Nuys Prognostic Index to calculate my chance of recurrence with and without radiation. Because my recurrence risk was only 4 percent, I chose only a lumpectomy.

My DCIS was nuclear grade 1/grade 2 without necrosis, so was not quite as serious as your grade 3 DCIS with necrosis. Most likely your recurrence risk would be higher. However, it would be very helpful to know what your risk is. That way you can make an informed decision on what treatments would be right for you.

Please feel free to send me a PM if you have any questions at all.

Otherwise feel free to check out my website if you think knowing more about my story would help you: https://sites.google.com/site/dciswithoutrads/home

Best wishes,

Sandie

terry54

I was dx with DCIS grade 3 on my left breast over 3 weeks ago. My BS said I need a mastectomy because of multi focal areas and I have very small breast. After seeing the PS whom my BS referred, my surgery with be in less than 2 weeks. My BS will also do a Sentinel Node Dissection just to be sure the BC  didn't spread and my treatment plan will be based on the resuIt. I will have  immediate reconstruction with TE  and second surgery for my implants including the good breast. Has any one had  similar procedure ?  Would appreciate any suggestion. I am still wondering if I am moving too fast with my decision but somehow just feel I need to get this over with.

StellaG

Hi Terri

I am in UK had exactly the same surgery as you havebeen offered, but on the right breast after initial lumpectomy with 2/6 positive margins. Had Mx surgery 20 Sept, and DCIS was found to be in 2 more areas of the breast so it was the right decision. However, unfortunately I had haematoma (sp??), had 2nd post op check up with PS yesterday and area around TE is still too swollen to do the expansion. It only needs one expansion to give me a C cup size then I can have the remaining op, which is the exchange and good breast enhancement. I didn't hesitate to go for the Mx when the PS said he was going to have to do a 2nd lumpectomy to get the 2 positive margins, it was the only decision I felt I could live with and this was justfied by the 2 other areas of DCIS being found. Just gotta be patient now and wait for this swelling to go down.

momof3NH

RachelA44,   

I have 3 kids(13,10,9)  and did rads over the summer. The people there were great and told me if was fine to bring my kids. They could wait in the waiting room while I had my treatment which only lasted about 10 min.  They couldn't come to the second waiting area which was where the patients sit in their gowns until called by the rad therapists. As it turned out I only brought them once . But, the whole environment was supportive.l

You are right about the MRI, I got mine BEFORE surgery. They look for hidden areas of invasive cancer with the DCIS or other cancer sites, and the size of the DCIS. 

  I actually didn't meet with an Oncologist until after I finished my rads. I am still unsure if I want to take the Tamox.

Phillydog

I was diagnosed two weeks ago with a second cancer (other breast; totally different cancer). It's very early, non-invasive DCIS. I was told I could do a lumpectomy (again) and that's it. However, I have had and still have lots of calcifications in this breast, so have decided to do a skin saving mastectomy. My onc said I would not have to do anything after that. My first dianosis was more invasive -- had lumpectomy, followed by eight weeks of radiation and five years of Tamoxifen. Now wish I had stayed on the Tamox! I am considering adjuvant therapy after my surgery (to be determined). I am not doing radiation again. There are two reasons for this: first, my GP says he does not want me to have all that radiation again. He feels that all that radiation is bad for my heart and my lungs. I agree with him totally; secondly, I wanted to have a DOUBLE mastectomy this time and found out from my Plastic Surgeon that because I had radiation, there is a higher risk of "complications" with surgery and she did not recommend I have it done. Wow! What an eye opener! Wish I had known this seven years ago. It might have made a difference in my decision-making. I must admit that I thought I asked every question possible when I was first diagnosed seven years ago. Hard to believe there is still so much to learn. If you don't have her book, you must get Dr. Susan Love's Breast Book. Just read the parts that apply to YOU!

Ariom

I was dx in November last year with a mix of grade 2 and 3 DCIS.

There was no way I wanted to have the Rads if I could help it, so a Mx was a no brainer for me.

I had the surgery on the 19th December and really haven't looked back. I chose not to reconstruct, which makes for a much faster recovery.

My final Pathology showed pure DCIS. My surgeon gave me the all clear, no other treatment necessary. I will be followed up every 6 months.

Nurse_Lizzie

Fingersntoes - my diagnosis was almost exactly like yours. I had been planning Lumpectomy and rads, but during my workup, they found that my DCIS was too large, and MX was recommended. Then they found "junk" in my opposite breast. At that point I opted for BMX with TE reconstruction. I have never looked back. For me, it was the best option. I'm nearly a year out, I have breasts again, am planning for nipple recon and tattoos. With clothes on, nobody can tell. I'm hoping that by the end of the year, it will be difficult to tell with them off!

Good luck!

Lizzie

Moderators

Welcome Momof3 and Phillydog to our community. We are sorry that you have joined, but you will find a amazing group of people here!!

Gentle hugs from your Mods

Shellshine

Dear Nurse_Lizzie -  I am now in the TE phase, quite uncomfortable, handling it ok but need something to look forward to: how does it feel after the exchange surgery and post-op recovery are completed? I know there are other forums addressing current reconstruction, but would like the perspective of someone who has fully recovered and back to their "new normal." 

~ Michelle 

Nurse_Lizzie

Hello Michelle



It was pretty amazing to have the exchange. I was really nervous before the surgery, I think even more than my original MX. I remember that the TEs felt like coconut husks velcroed to my chest. They were tight and fairly uncomfortable.



I think I felt the difference as soon as two days after my surgery, but the real difference was at my one week follow up. The first time I actually saw my chest was amazing! It did still take a while for everything to become my "new normal"' however. Even now, I find that if I overdo, I get tightness in my chest and under my arms.



My breasts are fine under my clothing, and I don't think I'll need significant revision, if any in the future. My next PS appointment will be in June and we will discuss nipple reconstruction and eventually tattoos. I definitely could stop now and be fine with my Barbie breasts, but I do want to finish the job.



Good luck to you in your exchange! How soon will you be doing it?



Lizzie