DCIS

Ritzy said:

Terri
There is nothing scary about radiation treatments. I think people fear them just because they know nothing about them. I had 7 weeks of rads and never got burnt. I even miss going, I miss the techs, my rads doctor, the people in the waiting room, the receptionist, everyone. And, I knew that the radiation was killing any stray cancer cells left over from my lumpectomy. My hubby took me everyday and we always did something fun. He made it fun for me. It really did go fast. I met with my rads oncologist and the team of techs before I started. They explained everything to us, showed us the radiation room and machine, showed us the computers that they use, gave us literature, made us feel very comfortable. They also let my husband stay outside the rads room and watch me when I was getting zapped. Knowing that made me even feel better. It only takes a few minutes for the treatment. I got the tattoos, but, you can't really see them they are so small. I did get very tired towards the end, so, I started taking naps and trying to get to bed earlier than normal. My skin did get very pink, but, after I finished, within a few weeks, my skin looks and feels like a baby's skin. It is beautiful! I hope this answer helps you Terri.

Sue

Thanks Sue
Sue,
Thanks for your response. It gives me some comfort and lessens my anxiety about the radiation treatments. I had read somewhere that it could cause heart damage since the area being treated is so close to the heart. It is my right breast that will be treated. Have you heard anything about damage to the heart?

cjhw said:

Triple negative
Judy,
I see you have been diagnosed as triple negative. I was just diagnosed last week. I see my oncologist tommorrow. How did you find an oncologist and how did you decide what was the right course? Do they make any adjustments in the chemo since tn?? I am still dealing with the fact that I am going to loose my hair which I know is the least of my worries. I love your cat picture!! Thanks for any and all info. I just found this site today and it is unbelieveable...when I read other people are having the same thoughts and fears...it lets me know it's ok and this too will pass!!
CJ

CJ,
You might want to read some of the other posts on here about being triple negative. In general, your chemo regimen will remain the same. There is some work being done right now on PARP inhibitors as a particularly effective regimen against triple negative, but it is still in clinical trials. I got TAC chemo, six times, and would have had the same had I not been triple negative. It sounds scarier than it is, CJ.

Mimi

terri805 said:

Thanks Sue
Sue,
Thanks for your response. It gives me some comfort and lessens my anxiety about the radiation treatments. I had read somewhere that it could cause heart damage since the area being treated is so close to the heart. It is my right breast that will be treated. Have you heard anything about damage to the heart?

alternative to whole breast radiation for lumpectomy survivors
Hi Terri,
I am a "graduate" of a different kind of radiation that spares the heart, lungs, ribs, and unaffected breast tissue better than whole breast radiation. It is called accelerated partial breast irradiation (APBI). There are several ways to receive the radiation but all of them are internal. Only the areas around your lumpectomy cavity are zapped. I hope you can ask your doctors about it or look up Mammosite, SAVI, or Contura through Google to find out more. Best part: it takes 5 days, not 6 weeks! I finished Sept 4, 2009.
~~Connie~~

terri805 said:

I am confused
I thought DCIS was cancer cells that are in the milk ducts and that they have not spread outside of the ducts. So I am just curious as to why one would need a mastectomy and chemo?
I was dx with DCIS on Dec 11th and had a lumpectomy on Dec 17th. The margins were clear but close on one side so the surgeon wants to go back in and take more out to have a wider margin. Mine was stage 0 grade 2. Quite a large area was removed 10x8x4 cm. He said I would most probably have radiation and Amiridex(sp?) for 5yrs. I see the oncologists tomorrow afternoon to find out what my treatment plan will be. I will probably have my second surgery the week of Jan 20th. Can someone please explain in what circumstances one would need a mastectomy and or chemo when dx with DCIS? Just when I think I understand something then I read something different.

DCIS
Terri, I had a double mastectomy with immediate reconstruction. No need for radiation or chemo. Yes, the cancer cells were still in my ducts, however, I was not a candidate for a lumptecomy because the cell was attached to my nipple on the left side.....my right side had multiple cells that had DCIS.

I believe the surgeons give you the option of removing the breasts because the microcalcifications can multiply. The way my surgeon explained it to me, she said that she'd rather do a mastectomy than have me coming back a year later because of another cell popping up..

So yes, DCIS does not spread, but it can come back in another cell....

Jill

cjhw said:

Triple negative
Judy,
I see you have been diagnosed as triple negative. I was just diagnosed last week. I see my oncologist tommorrow. How did you find an oncologist and how did you decide what was the right course? Do they make any adjustments in the chemo since tn?? I am still dealing with the fact that I am going to loose my hair which I know is the least of my worries. I love your cat picture!! Thanks for any and all info. I just found this site today and it is unbelieveable...when I read other people are having the same thoughts and fears...it lets me know it's ok and this too will pass!!
CJ

Hi CJ
I already had a good surgeon that I loved from a breast biopsy 5 yrs. ago (benign). I asked him for a referal to an onc and my Internist as well. As it turned out I found her on my own online. She is part of the team at a very respected cancer center here and they have a satilite opening near me and her qualifications werre what I was looking for. She is great. I just love her. I made the decision to have the mastectomy after my second wide incinsional biopysy and Sentinal Node Biopsy (clean nodes). I still didn't have clear margins and there were little DCIS plus the invasive cells mixed in. I decided the breast must go. I was very lucky cause when they checked the removed breast tissue there were no cancer cells found. This meant no radiation, just chemo. My onc selected my course of treatment...4 cycles of Cytoxin/Taxotere. I had my 4th treatment on Dec. 11.

Thanks for liking my kitty, her name is Bootsie. We have 8 kitties, all rescues. My husband and I are on the board of our local Humane Society and are very active in fundraisers etc. Now that I'm feeling better I'm glad to get back to it.

If you don't like your surgeon or onc, find another one you do like. It's very important to have a good, trusting relationship. Mine spends as much time as I need when I'm there, answers all questions, writes everything down I say and is a great listener. You'll get thru this and it's amazing that eeach deciison just happens as it comes...you can't make them all at once, just one at a time. Everyone here is ready to listen and give good advice.

You'll do fine, and we can't help but worry, especially at first. But as you gain knowledge about this, the worry gets less and easier to deal with.

Hugs, Judy :-)

kimberlyrose said:

It feels like you've read my mind...
I can't believe it's taken me this long to find this site/blog/post. I'm sitting here crying because I finally feel like I've found people who understand. I was diagnosed with extensive DCIS in my right breast at the end of Sept and opted for a bilareral mastectomy(even though BRCA was negative). I was told there was no need for ongoing treatment (pathology confirmed no invasion, but hormone positive). I've struggled with what to tell people or how to think about myself. I too don't really feel like a "survivor" because there's no ongoing battle at this point. I feel like I got of easy when so many women are not so lucky and that I shouldn't whine or feel bad. In a strange way, it's reassuring to know that other women feel the same way. Thanks for starting this dialogue and for everyone who has responded.

cancer is cancer...some have
cancer is cancer...some have to deal with more pysical aspects of it but to me if you have been given the diagnosis of cancer or PRE cancer its so scary so welcome... everyone fits in here YOU ARE A SURVIVOR!!!!! (((hugs))) Lisa

Welcome to the club
Robin,

I had DCIS and a bilateral mastectomy. Although I have had radiation and am currently on Tamoxifen, originally I was not suppose to have to have either (just the surgery). I know what you mean - if DCIS isn't really cancer then why is the surgery so much more extensive than the procedures done for some of the IDC cases?

You don't have to be strong or be over it. I understand that you want to appear strong, fine and happy while you are at work, but it doesn't mean that you have to always be that way. I have had days when I've cried on the way to work and then stopped when I got there and went through my day like nothing was wrong. I figured that the people I work with don't need to know everything I'm going through in my personal life so I just focused on what I needed to get done at work.

I sometimes wonder why my husband stays with me after all of this but then he smiles at me and tells me that he loves me a lot and wants us to spend as many years together as we can. I see your picture and you are not ugly. It is ok to feel bad once in a while, but don't let it get you down for too long. Tell your husband how you feel and just let him love you.

Please keep posting and let us know how you're doing. I hope my experience can help you not feel alone in this.

Wolfi

terri805 said:

I am confused
I thought DCIS was cancer cells that are in the milk ducts and that they have not spread outside of the ducts. So I am just curious as to why one would need a mastectomy and chemo?
I was dx with DCIS on Dec 11th and had a lumpectomy on Dec 17th. The margins were clear but close on one side so the surgeon wants to go back in and take more out to have a wider margin. Mine was stage 0 grade 2. Quite a large area was removed 10x8x4 cm. He said I would most probably have radiation and Amiridex(sp?) for 5yrs. I see the oncologists tomorrow afternoon to find out what my treatment plan will be. I will probably have my second surgery the week of Jan 20th. Can someone please explain in what circumstances one would need a mastectomy and or chemo when dx with DCIS? Just when I think I understand something then I read something different.

DCIS and mastectomy
In my case I had DCIS in three lumps (7, 5 and 4 o'clock) and one lump (at 10 o'clock) that was unable to be biopsied . . . so a mastectomy seemed to be the most (visually) appealing solution. The three were ER+, nodes were negative, and my margins were almost clear (they'll do a re-excision with my implant to get clear margins). BUT! my Oncotype was 42.

So its chemo for me, and Tamoxifen, and my oncologist says we'll get my recurrance % down to single digits.

DCIS is cancer. It may be cancer ONLY in the breast, but they still check the lymph nodes. Cancer is cancer is cancer. It may be a single cell, but its still cancer. (IMO.)

terri805 said:

I am confused
I thought DCIS was cancer cells that are in the milk ducts and that they have not spread outside of the ducts. So I am just curious as to why one would need a mastectomy and chemo?
I was dx with DCIS on Dec 11th and had a lumpectomy on Dec 17th. The margins were clear but close on one side so the surgeon wants to go back in and take more out to have a wider margin. Mine was stage 0 grade 2. Quite a large area was removed 10x8x4 cm. He said I would most probably have radiation and Amiridex(sp?) for 5yrs. I see the oncologists tomorrow afternoon to find out what my treatment plan will be. I will probably have my second surgery the week of Jan 20th. Can someone please explain in what circumstances one would need a mastectomy and or chemo when dx with DCIS? Just when I think I understand something then I read something different.

I have done a lot of reading
I have done a lot of reading since finding out that I too have DCIS 01_12_2009
it is not cancer so why the radical treatments?
I don't get it
there are plenty of Doctors out there that think that this is over diagnosed
I have become very skeptical of the thinking behind this DCIS
I am taking my time to make a decision as to a course of action
I am going for a second opinion and then I will have a lumpectomy at most
go on the internet and read
ahha what doctors don't tell you
maryann napoli
shelly huang
good luck an d be well!

DCIS

I am new to this discussion.  I, like you was diagnosed on April 15, 2015 with DCIS and on May 5 had a double mastectomy.  I did not have to have chemo, radiation and no tamoxifen.  I worry constantly that the cancer will come back.  Do you ever get over that fear?