Just diagnosed with DCIS

chocomousse · April 2015

chocomousse · April 2015

My Primary gave me the results over the phone, the pathology report from the core biopsy said positive for malignancy with a diagnosis of DCIS. She suggested several breast surgeons and recommended that I have the microcalcification cluster removed ASAP. After reading the layperson's guide to DCIS in this forum, I am going to call back tomorrow to make sure I heard everything correctly and that this is pure DCIS and not microinvasive DCIS or IDC. From the description, pure DCIS is basically pre-cancerous, Stage 0, so why the urgency to have it removed? A PET Scan for something else showed an area in my rt breast that illuminated 3x greater than the surrounding tissue...which sounds like cancer, unless pre-cancer cells are also super active.

chocomousse · April 2015

Called my doc for clarification. I have DCIS - high grade. Grade 3. Non-Invasive.

chocomousse · April 2015

Just got more info. from my Radiologist's office. He thinks that based on the features of the mass, it may already be invasive, either IDC or ILC. His nurse advised me to select a breast sirgeon ASAP. A hormone receptor test has been ordered, the results should be in next week.

Suzannecarol · April 2015

Chocomousse,

I am sorry you find yourself here on this site but you will have many women help you get through this.

chocomousse · April 2015

Thank you.

I spoke to my gynecologist after having all of my records sent to him and was told not to put much stock in what the Radiologist thinks as it's the breast surgeon who will give, after looking at everything, the definitive diagnosis. So, since the biopsy tissue showed DCIS and not IDC, that's what i'll believe I have unless the breast surgeon tells me differently.

elisewin · April 2015

dear Choco, I'm sorry you are here with us and I wish for you pure DCIS!

But please remember that until the cancer has been removed and you have a patology with clear marging you can't exclude the invasive component.

The problem is that the same cancer can be dcis in one side and invasive at the other end, just to give you an idea. So if the fine needle samples comes from the DCIS side you have that result but the invasive part is still there.

I live in Hong kong and for this reason i never had a dx of DCIS after both of my fine needle biopsy, to my great joy I had to wait surgery to get it.

Wish all the best

pennylane · April 2015

Hi Choco...A quick reminder...Just reread Beesie's post on DCIS facts...And the odds are very much in your favor....Apparently after a need biopsy dx of DCIS, only 20% of these things turn out to have any amount of IDC after complete surgery pathology, and then only 5% need their dx changed to IDC due to a substantial amount...These are pretty good odds in my opinion so hope that helps you feel some comfort until your surgeryI And very best wishes til then.....

Annette47 · April 2015

As others have said, the odds are very much in your favor that the DCIS has not become invasive, but that said, the ONLY way to be sure is to remove it and examine it under a microscope. If we had some way to differentiate between DCIS and early IDC without removal, then treatment for DCIS would probably be very different, but unfortunately we don’t. Hopefully your diagnosis remains pure DCIS, but even if it turns out you have some IDC, it is very likely that it was caught early enough so as to have little effect on your treatment or prognosis.

chocomousse · April 2015

Thank you everyone!

I had a core biopsy, not a fine needle biopsy, so a good amount of tissue was extracted. That's kind of why I think the pathology report is accurate for grade 3 DCIS. I think my Radiologist felt I had IDC based on the degree of illumination shown on the PET images which correspondes with the grade 3/high mitotic activity the biopsy detected and the features shown on the mammo/sonogram so he was surprised that I only had pure DCIS. Next week should be helpful as my hormone receptor report will be in and I'll be seeing 2 breast surgeons.

chocomousse · April 2015

Just got a copy of my pathology report:

Breast cores, right biopsy:

- High grade ductal carcinoma in situ (DCIS, grade 3) with comedo necrosis and associated microcalcifications, measuring at least 1.0 cm in greatest dimension. See comment.

- No invasive carcinoma identified.

Immunohistochemical stains for E-cadherin and CK903 were performed and are both positive, supporting the diagnosis of DCIS.

chocomousse · May 2015

I'm ER+ & PR+. The nurse said HER2 status isn't relevent in DCIS.

trailrose · May 2015

chocomousse- I had the same biopsy results as you DCIS high grade with comedonecrosis. My BS said surgery wasn't pressing and I waited 2 months before my BMX. I was offered LX with radiation but as you probably know is that high grade DCIS with comedonecrosis is a little different than low grade. I opted for a BMX and had pure DCIS and it was considered done with the BMX. I also was ER+ & PR+. Just remember the odds are in your favor! On the other hand I know a woman that had same diagnosis on her biopsy(High grade DCIS w/ comedonecrosis) and after her LX hers came back as Stage Ia. I don't have to take Tamoxifen as my BS feels like the cons outweigh the pros.

chocomousse · May 2015

Thank you Trailrose! I hope I'm told that I have some time to spare. Everything's felt so rushed since that initial PET Scan. I'd like some time to get things in order before the surgery.

Here's the actual report. It looks like I'm much more ER+ than PR+. Does anyone know the significance of the histolgic and allred scores?

Estrogen Receptor (ER):

Assay Result: POSITIVE

Percent Nuclear Positivity: 90

Staining Intensity: 2+

Allred Score: 7

Histologic Score: 200

Progesterone Receptor (PR):

Assay Result: POSITIVE

Percent Nuclear Positivity: 15

Staining Intensity: 1+

Allred Score: 4

Histologic Score: 15

trailrose · May 2015

You're welcome chocomousse! My ER came back as 95% and PR was 65%. I don't know the significance of the histologic and allred scores. Hang in there! I felt like the waiting before my actual BMX was difficult. Then once I had the surgery there was a relief then you wait for the final pathology! For me as each step went by I wouldn't even think about them anymore. Try to keep your life/routine as normal as possible as it helps tremendously! Remember the odds are in your favor! Keep me posted on how you do.

chocomousse · May 2015

Thank you. Hmmm, a mastectomy would eliminate all future concerns as well as the need for radiation and/or hormone therapy. It's just that I'm still recovering from being on life support last year for respiratory failure, just brought my weight up to 100 lbs and feel that a mastectomy would stress my bodies healing process too much. It seems that a lumpectomy would be easier to recover from. But yeah, it would be great if I could put this off until July.

I found this article here about the Allred score but nothing about histologic score so far. http://www.breastcancer.org/symptoms/diagnosis/hormone_status/read_results

trailrose · May 2015

Hi chocomousse- Goodness you are right your body has been through a VERY stressful time with having to be on life support! I know everyone heals/deals differently with a MX but it is a MAJOR surgery and stressor on the body. I healed very nicely but it was obvious my whole body system was stressed and off for a little while! Go with your gut feeling. You will make the right choice for you. Thank you for the Allred score article.

LAstar · May 2015

Hi, chocomousse -- just want to point out that a MX does not eliminate all possible concerns. Research has found similar survival rates for DCIS with LX and MX, and one recent study found slightly higher survival rates for LX! Recurrence rates are lower for MX, but MX is no guarantee that BC will not return. I had 2 LX with involved margins and had to have MX. The MX is much more difficult. Given your recent health problems, you could have the LX, get the cancer out, and just see what you are dealing with. LX is a quick surgery and quick recovery. Best wishes in getting strong and healthy and having a great pathology report!

chocomousse · May 2015

Thanks guys!

I met with one BS today and left terrified. She's really pushing for a MX. She said given the size of my boob compared to the size of the cluster, a lumpectomy will result in most of my breast tissue being removed and leave very little breast left so it's kind of moot to opt for a LX over a MX. She said that a LX will necessitate radiation whereas a MX won't. She slso said that because I'm ER/PR +, I'll need hormone therapy. I asked her about lymphedema which she said would likely occur if most or all of my lymph nodes are removed . Otherwise, she was very friendly, thorough and seemed competent. I felt that I could trust her. I see another BS for a second opinion on Friday. I hope he tells me that I have pure DCIS, only need a LX and that neither a SLB, radiation or hormone therapy will be required. Her assessment seemed like overkill for a lump that's not even cancerous.

LAstar · May 2015

LX+rads+AI is a standard treatment for DCIS, especially with Grade 3 DCIS. With uni-lateral MX, you probably won't need the rads but would probably have AIs recommended. I had BMX so I didn't have rads or AIs recommended.

I hope they don't want to take all of your nodes! If you browse through these threads, you'll see many folks with DCIS where only 2 or 3 nodes were taken and none had any invasive cancer. I had 2 removed at my BMX and have had Stage 0 LE since (not a lot of noticeable swelling, just deep soreness in my arm if I overdo, get a cut or hangnail, etc.).

2nd opinions are great!!!

chocomousse · May 2015

Thanks Lastar! I'm sorry to hear that you have pain and discomfort after having only 2 lymph nodes removed. I was told that removing only 2-3 wouldn't result in lymphedema.

LAstar · May 2015

I was told the same thing, maybe a 1-2% chance. But I think this statistic doesn't include Stage 0 LE which is not as bad but still has to be managed, apparently for a lifetime. I have a sleeve and do lymphatic drainage massage when I have a problem, and the discomfort goes away within a few hours.

trailrose · May 2015

Chocomousse- Good idea on getting a second opinion. I certainly hope they're not removing all or most of your nodes! I had 1 sentinel lymph node removed from my DCIS side and 2 removed from the healthy side (because I have a variant in the MSH2 gene) My BS said a 1-2% chance of developing LE. He told me that because I was in good physical shape he wasn't worried about it happening. With that being said I had my IV catheter placed in my right hand (DCIS side) on May 1st for my exchange surgery and am doing fine. The left arm still has numbness on the back of the arm and my elbow hurts a little but I just had a BMX on January 20th! I still will be cautious and have my BP taken from my calf.

LAstar- Thank you for sharing your experience with Stage O LE. Very informative.

happynewyorker · May 2015

chocomousse

I was diagnosed with DCIS stage 0 breast cancer. They found cancer of the milk ducts. That's how I found I had something wrong. My biopsy they found 6 breast calcification. They removed 10. I had my mastectomy in February of this year.

I

Get a second opinion. I was told to have my breast removed. My second option was take tamoxifen for the years to keep the cancer at bay. That's not what I want for me. They removed my lymph nodes and the cancer didn't spread.it takes time for the skin to feel normal. I didn't get lymphedema, but can because I'm overweight. I didn't need chemo or radiation. Tomorrow I'm having my reconstructive surgery on may 15th. I'm now wear a medical alert arbracelet. Today is 3 months since my mastectomy surgery.

Soon this chapter in my life will be closed. A memory to share with others.

Me

chocomousse · May 2015

Hi Happynewyorker,

It's good that you were given a non-surgical option. I'd prefer that too but I also have uterine fibroids and I read here that Tamoxifen can make them grow.

Good luck with your surgery!

trailrose · May 2015

Chocomousse- I, too, have uterine fibroids and was told that yes Tamoxifen can make them grow so another reason I went for the BMX.

chocomousse · May 2015

Saw a third BS today and this is who will be doing my surgery. He thought I was a good candidate for LX and will only remove my sentinel node to check for invasive cells. I may also qualify for brachytherapy so I'm very happy with this treatment plan.

Oh, the 2nd doc I saw was adamant about a MX too. Glad I got a 3rd opinion.

HazelEyes07 · May 2015

Hi Chocomousse,

So glad you got a 3rd opinion and are happy with your treatment plan!! Smile

I was diagnosed with DCS with comedonecrosis, Grade 3 February 15, 2010 and had a double mastectomy May 20, 2010. I got more than one opinion but didn't rush to have surgery because each surgeon told me to take my time and get as many opinions as needed to make the decisions that was best for me regarding treatment. Due to my family history & factors in my DCIS, I made the decision to have the double mastectomy which was a good thing since the pathology report came back that I had LCIS in the other breast. Since I was ER-/PR- I was not able to take the Tamoxifen which I didn't want to anyway. Smile

I wish you all the best with your treatment plan!!

Katpip · May 2015

I too have just been told I have non invasive DCIS, high grade with comedo necrosis and luminal in my right breast.

I'm still trying to learn as much about it as I can. I've spent hours and hours on the internet reading as much as I can.

I had my first appt. with the BS last week and she told me I needed a mastectomy because my breasts are small and the area is large. I feel like it's over treating....it seems almost insane to remove the whole breast! I understand that it will eliminate the cancer but I want a less radical way to treat it. It just seems to me that they so quickly rush to total removal of breast! She said it like she was telling me to have a wart removed. So "matter of fact". I was so shocked that I hardly asked any questions!

I don't want to go through anymore surgery than absolutely necessary. I want to have as little recovery time as possible.

I would really like to get another reading of the Pathologist's report for a second opinion. It is possible that the diagnosis could be incorrect, isn't it?

I have an appt. with another BS to get another opinion. I was reading Chocomousse's posts and she found a surgeon that agreed to do an LX where two others wanted to do a total mastectomy. I am hoping I can have the same experience.

I've never had any kind of surgery and I don't do well with pain. I want to deal with this as simply as I can. It seems that a total Mastectomy and reconstruction is a bit extreme. What should I do??

turtlelady · May 2015

Katpip, my experience might give you something to consider in making your decision, but, of course, everyone is different. I chose LX and will regret it for the rest of my life. I had read an article trivializing DCIS as "pre-cancer" (although it is a carcinoma), and opted for what seemed the easier choice, the less radical surgery. The surgery itself was no problem.

However, be aware that LX requires a pre-surgical procedure to place guide wires in the breast. It is usually painless, although uncomfortable as it takes place on a biopsy table with head, neck and arms twisted backwards. And it can take a long time. In my case something went wrong and I was in pain for two hours for this procedure. I felt every motion of those 4 wires. I didn't realize it at the time, but it caused PTSD. (This was almost a year ago, and I had my latest flashback of wires 3 days ago.)

Additionally, the "easier" surgery left me needing radiation, which would not usually be the case with a DCIS following MX. My surgeon didn't take any lymph nodes, but some were damaged by the rads. This has left me with painful truncal lymphedema and cording.

I'm being treated for all these complications, and it isn't easy. In my situation, ALL the existing complications (PTSD, cording & lymphedema) were caused by procedures that wouldn't have happened with MX. Obviously, things can go wrong with any surgery or other medical procedure. Nevertheless, I don't think people are sufficiently warned (if at all) about the dangers of radiation causing lymphedema.

Additionally, people diagnosed with a DCIS (or even the true pre-cancerous condition, atypical hyperplasia) are at increased risk of additional tumors, including invasive ones. So having a MX or even a BMX isn't as ridiculous as many would have you believe. It would prevent additional tumors.

Many women have a LX, even with rads, and do great, with no further problems. But I suspect there are plenty of woman in my situation. Just wanted to let you know that lumpectomy doesn't guarantee easy sailing. The one thing that's true with a DCIS is that you don't have to rush the decision. I took over two months, to get to a more convenient time. But unfortunately made a decision that turned out badly for me.

Best of luck to you, whatever you decide.

chocomousse · June 2015

Thank you Hazeleyes.

Hi Katpip! What size is your cluster? It seems that when it's over 3cm, BS's recommend a MX.

Gosh turtlelady. I'm sorry to hear that. I thought I've read everything about LX but guess not as this is the first I'm hearing about that. I'll definitely ask the nurse about that.

A nurse sent me more info. about brachytherapy. I had no idea that it was invasive and rife with complications. I'm not interested in this at all now. I've read that a non-invasive version is currently in trials so it's not widely available. I feel like I'm back to square one.

Edited to add:

I just found this.

Finding the tumor in the breast

In some cases, the surgeon uses special methods to help find the exact part of the breast that contains the tumor.

Wire-localization (needle-localization) at the time of surgery

Sometimes breast cancers found by mammography (or other imaging) are nonpalpable (cannot be felt). If the tumor is nonpalpable, a procedure called wire-localization or needle-localization will be done just before surgery. A radiologist uses a mammogram, ultrasound or breast MRI as a guide and inserts a very thin wire into the breast in the area of the cancer. The surgeon then uses this wire as a guide to find and remove the tumor during surgery. The wire will also be removed during surgery.

Just diagnosed with DCIS

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Wire-localization (needle-localization) at the time of surgery

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