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How many DCIS stage 3 that turned into stage 4?

Wolfi's picture
Wolfi
Posts: 425
Joined: Aug 2009

Hi.

As many of you know I was diagnosed with stage 3 and had my bi-lateral in August 2009. I have had radiation and been on Tamoxifen. I have had pain that seems to be getting worse every week so my onc took me off the Tamox to see if it would help with the pain. I have been off for three weeks and I can't say that I have noticed much of an improvement. My pain started in my back and is now pretty much all over - back, hips, neck, joints. He has me set up to see a rhumatologist next month.

I asked about bone scans and he said that since I had DCIS it would not be a reoccurance and there was no reason to do a bone scan (I've never had one). This doesn't seem right to me and I was wondering how many others out there had been diagnosed with DCIS stage 3 who now have mets.

Any info would be appreciated.

Thank you.

Wolfi

Dawne.Hope's picture
Dawne.Hope
Posts: 820
Joined: Sep 2009

Dear Wolfi,

My understanding is the pure DCIS is stage 0. Some DCIS has microinvasion in it thus it is stage 1 and it can metasize to stage 4. It's not unheard of ... but there had to be some kind of invasive component in your DCIS for it to have been staged at a 3. Or there was something else in your pathology report other than the DCIS in order for you to be staged a 3.

Do you have an onocologist? Since were initially staged at a 3 I think a scan would be wise. Take care and I hope you get some answers.

Much Love,
dh

CypressCynthia's picture
CypressCynthia
Posts: 3914
Joined: Oct 2009

Wolfi, it's late for me and I'm getting confused?? Did you have DCIS (ductal carcinoma in situ) the earliest form of breast cancer? Or I think you mean that you had IDC (invasive ductal carcinoma) that was Stage 3?

Wolfi's picture
Wolfi
Posts: 425
Joined: Aug 2009

DCIS Stage 3

I started out at Stage 1 with my biopsy and had a lumpectomy to remove the bad spot. The margins were not clear after the lumpectomy and the outside margins were Stage 3 so they did the bi-lateral. My clear margin after bi-lateral was .01 mm from chest wall so I had radiation.

I have never been told IDC - only DCIS (no lymphnode involement).

Dawne.Hope's picture
Dawne.Hope
Posts: 820
Joined: Sep 2009

And stage 1 with the initial biopsy? I understand the margins weren't clear, but if it was pure DCIS ... it would still be a stage 0, although the margins weren't clear. It would just be a bigger area of DCIS, but still stage 0. Did you have chemo?

I don't have answers for you, I'm sorry. I do hope you find some.

Much Love,
dh

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

I had Invasive and Ductal bc and was considered Stage 1. I had back pain several months ago and my oncologist ordered a bone scan for me just to be sure. It wasn't cancer which was great. Just some very early arthritis.

I think if I were you, I would request one. If for nothing more, to ease your mind.

Good luck,

Megan

New Flower
Posts: 3938
Joined: Aug 2009

very similar, Going to lumpectomy as stage 1, 4.0x4.0, no clear margins, then mastectomy 6.5 cm with no clear margins, then skin re-excision.

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

New Flower, how did you go from Stage 1 to Stage 3?

New Flower
Posts: 3938
Joined: Aug 2009

Wolfi sorry but I have the same question as Cynthia.
I was diagnosed with stage III C in June 2008. Bone scan was required even before final pathology report to rule out mets to the bones. If you have had stage III bone scan should be performed.
Plus you have back and hip pain, which always a serious concern for oncologist, so I am surprised by your doctor reactionPlease find someone who can reference to for bone scan test.
I am sorry that you have experience pain. Since you have been on Tamoxifen for several months from my experience 3 weeks is not enough to return to normal.
Please keep us posted,
Hugs,
New Flower

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

Getting a bone scan wouldn't hurt. It is painless and you keep your clothes on for a change!

Hugs, Lex

Dawne.Hope's picture
Dawne.Hope
Posts: 820
Joined: Sep 2009

There was a recent discussion over on bco about DCIS & progression. I post the link because there was a lot of good discussion & research on that thread and it may shed some light on what is going on. Hope it helps!

http://community.breastcancer.org/forum/68/topic/765351?page=3#idx_71

hikerchick's picture
hikerchick
Posts: 21
Joined: Nov 2010

Hi Wolfi,

There's a huge difference between DCIS Grade 3 vs. Stage 3 cancer. DCIS is always Stage 0 but can be Grades 1, 2 or 3. It would sure help us understand things better if you could look into that and let us know.

Thanks,
Nancy

crselby's picture
crselby
Posts: 379
Joined: Oct 2009

Hi Wolfi. If you determine that what you had was DCIS, grade 3, then you and I are in the same boat as far as that goes. My tumor was 13mm (relatively small) but with quite abnormal cells and growing fast (hence the grade 3). My surgeon, at my request, took a huge amount of tissue, about the size of a tennis ball, as I had read that clear margins are very important with DCIS for reducing chance of recurrence,. (I'm large chested.) There was a dot of DCIS in the margin tissue, but not AT the margin. So I had radiation and am on Tamoxifen. It's been almost 2 years since I was DXed. Absolutely no sign of further problems in either breast per mammograms and MRIs. No back pain or anything else you described.

Hope this helps.
~~Connie~~

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

You might want to get a bone scan Wolfi. Good luck to you!

CypressCynthia's picture
CypressCynthia
Posts: 3914
Joined: Oct 2009

DCIS is always stage 0, but it can have 3 grades. There is not a grade 4 and it is unlikely but not impossible that this could turn into IDC.

See:
DCIS Diagnosis

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

Thanks for the link Cynthia! And, good luck Wolfi!

Wolfi's picture
Wolfi
Posts: 425
Joined: Aug 2009

Yes, I checked and it is Grade 3. I find it interesting that people with Stage 3 have lumpectomies and I have Stage 0 Grade 3 and I had to have a bi-lateral. Oh well, there's nothing I can do about it now.

I will just keep going to my doctor appointments as they give them to me and not worry too much that it will turn into anything bad like some of you have. Here I was worried this whole time that I could end up getting Stage 4 and dying. No wonder my doctor gets impatient with me - I just need to live my life and not worry so much.

I have stopped eating meat and dairy products for a little over a week now and I feel better. My pain is not as bad in my back and joints. I have a doctor appointment next week and an appointment with my onc in April.

cinnamonsmile
Posts: 1049
Joined: Dec 2010

hi wolfi, i had dcis stage 0, grade 0 diagnosed in december 2010. i was told although it was a slow growing cancer, it was all over my ducts, as well as precancer cells, to me it felt like my milk ducts were a breeding ground for precancerous cells and dcis. i did not have clear margins on my lumpectomy. the lumpectomy was so hard on me, i really didnt want to go back in and possibly find out still no clear margins. my surgeon explained both options for me and i chose to have the mastectomy, although at the time it was originally going to be a single, but after MRI showed a mass on the other breast, i decided to get a bilateral, skipping the needle biopsy, possible lumpectomy, and just go to the mastectomy (i had told myself if they even SUSPECTED anything in the other breast, i would just want the mastectomy minutes before my surgeon came in the room to tell me they found a mass on the mri that had not shown up on mammogram).i cant say i am happy with all this, but i am very comfortable and at peace with my choice of treatment probably about 98% of the time. i do have my breakdown days but think i would have them even if i had chosen the other alternative of lumpectomy plus radiation (and i know that mastectomy does not always mean rad/chemo/recurrence free). i have also chosen no reconstruction and can say i am happy with that. i have post mastectomy pain syndrome, so i can relate with the pain. it is hard to live with for sure. i wish you the best with your upcoming appts. and hope they can help you. take care.

New Flower
Posts: 3938
Joined: Aug 2009

you took a very proactive and aggressive approach with your treatment and should not regret it. I am sure as time goes by you will be pleased with your choice.
As for stage III, you forgot that stage III patients were recommended and most have had Chemo from 4 to 6 months. There is a big difference in treatment between stage III and stage o grade 3.
My surgeon recommends mastectomy even for stage II and I am glad that I took her advice. Unfortunately for me pathology report showed stage III.

If you have concerns please ask your doctor for tests. I hope he will understand and find appropriate diagnostic tool to identify your pain.
Livestrong foundation has advices, including dietary for joint pain. I use them.
Wishing you that your pain will go away.
Hugs
New Flower

LAU1965
Posts: 10
Joined: Feb 2011

WOLFI I DO HOPE YOU GET YOUR ANSWERS AND DO NOT BE AFRAID TO ASK QUESTIONS AND BE PERSISTENT ABOUT IT, I REALLY HOPE YOUR PAIN GETS BETTER. SENDING A BIG HUG BE POSITIVE AS YOU HAVE BEEN WISHING YOUR PAIN GOES AWAY.

LAU

LAU1965
Posts: 10
Joined: Feb 2011

I AM NEW I WAS DIAGNOSED WITH DCIS ON 2-10-11 HAD BILATERAL MASTECTOMY ON 3-29-11 DIAGNOSED SIMILAR TO YOURS
THIS MAY SOUND STRAGE BUT AFTER THE MASTECTOMY I WAS HAPPY THE CANCER WAS OUT OF MY SYSTEM BUT I FOUND MYSELF
FEELING STRANGE A PART OF ME WAS MISSING AND I WAS VERY SAD IS HARD TO EXPLAIN I STILL FEEL THIS WAY EVEN THOUGH IT HAS BEEN ONE MONTH AND I AM HEALING VERY WELL NO PAIN NO SORENESS. I JUST HAVE THIS STRANGE FEELING I CRY BECAUSE I LOST MY BREAST LIKE PART OF ME DIED IS THIS STRANGE? AM I THE ONLY ONE FEELING THIS WAY? IS VERY HARD TO EXPLAIN. I HOPE YOU DO NOT MIND ME ASKING YOU.

LAU

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

I don't know why certain doctors recommend a lumpectomy over a mastectomy, but, I am sure they have good reason to.

Hoping your pain gets better Wolfi.

Hugs, Megan

survivorbc09
Posts: 4378
Joined: Jun 2009

Happy to know that your pain has eased up for you Wolfi. Good luck with your appointment next week.

Hugs, Jan

mackiedoo
Posts: 1
Joined: May 2011

I'm very confused now. I didn't get to look much at my path report, but I was told it was STAGE 3 - I saw DCIS on the report (trying hard to get a look but couldnt understand much anyway) and have to have surgery next week, radio for 6 weeks every day and then 9 months to a year of chemo! If DCIS is not invasive, how come I have to have all this? Any ideas would be welcomed, thanks guys!

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