My DCIS Journey

Caber224

I have read the posts to this board since my diagnosis earlier this summer. I was diagnosed with a 4cm grade 3 DCIS lesion that had necrosis and was E+/P+. I am thankful to all of you here who have shared your stories and insights, because reading here was incredibly helpful as I looked at my treatment options. I feel it is my turn to give back to others well.

I was scheduled for a double mastectomy within two weeks of my diagnosis. I went through a range of emotions and options, including no reconstruction at one point. Eventually, I realized this was moving way too fast toward a significant surgery and sought a second opinion at a top institution. Long story short, I was given many, many more options for surgery and reconstruction, and ultimately decided to join a clinical study of neoadjuvent treatment for E+ DCIS.

I recently had my three month check with my MRI read locally and by the study radiologist in California. The local radiologist saw no decrease in size, but a decrease in the enhancement or blood flow to the area. The central radiologist saw no evidence of disease! MRI readings are clearly not an exact science, but I am thrilled. I will continue taking the Letrozole for another three months, and then I will have a lumpectomy. Quite a change from my initial course of treatment. I must have surgery because that is the standard of care at present, and they will further study my tissue.

If you are diagnosed with DCIS, please, please allow yourself time to consider several opinions. The medical community is working hard to develop new plans for treating this disease, and surgery may not be your first option any more. This is a frightening experience, but so much is happening in the treatment of DCIS right now.

Thanks again to all of you for helping those of us who are facing DCIS.

ballet12

This is fascinating. The study radiologist concluded that the DCIS is no longer present at all?? And the other radiologist still saw the same size of mass with less enhancement? How is that reconciled? Also,why aren't they also doing mammography, as that is often more able to visualize DCIS? I am also interested in the fact that they accepted you as a candidate for the study, with high nuclear grade DCIS and a relatively large area. I'm assuming that your DCIS was also multifocal. Also, if it's "all gone" where exactly do they do the surgery?

Annette47

That is interesting! I don’t necessarily trust the accuracy of imaging though, so I’d be interested to hear the result of the lumpectomy as compared to the initial biopsy.

Caber224

You are correct, there was not a mammogram done at the three month mark, only an MRI. At the six month mark, before the scheduled surgery, there will be another MRI and a mammogram. They know where to operate and what to remove because of the clip that was placed during the stereotactic biopsyand the original measurements.

I don't know how they are reconciling the two reads of the MRI. But I know now that none of this is exact science. The first pathologist read the initial biopsy when this all began as grade 3 with no necrosis, the second opinion pathologist read stage 2 with necrosis. Clearly this all is not an exact science. The study I am in is through the NCI and is testing neoadjuvant drug therapy in the hopes of identifying in the future, who will benefit from surgical treatment for DCIS and who can take a non surgical treatment path.

I too am anxious to find out the results when they actually remove the tissue during the lumpectomy. I just feel very fortunate to have been given some options when I think about how close I was to having a double mastectomy. I fully understand re is a small chance that might still have to happen, but it has been good to fell a little more in control of the decision

Jelson

Caber224 - thank you so much for posting and for participating in the study. Does the clinical study have a number/name?

Using neoadjuvent AIs to dial down the treatment of DCIS makes so much more sense to me than "watchful waiting".

Caber224

Here is a link to the study:

http://www.cancer.gov/about-cancer/treatment/clini...

MKTCA

Caber224, wow that is very interesting and I hope this will show as a break through for DCIS someday soon.  Thank you for participating on the clinical trial and sharing this with us. 

owlwatcher

Thank you for posting this. I read the paper.

percy4

Thank you for Posting this. My DCIS/microinvasion is deemed to be gone, but I like to stay on top of new info in case I should have a recurrence. I am just not sure at all that I would go straight to mastectomy, which is usually indicated in a previously radiated breast.

LAstar

How exciting! Thanks for sharing this information. I'll be interested in your results as well!

CAMommy

I wish I could have been part of the study. I too though bmx right away but then said whoa, slow down. I went with the most conservative I could which was lump + rads. I am not doing well with tamoxifen.

I will be curious to see what they find when the do your lumpectomy. My DCIS was much bigger than they expected. My imaging showed 17mm and I ended up with 6cm! Luckily all pure DCIS.

april485

This is very interesting! They are doing things with DCIS that are really effecting changes in treatment these days.

I also participated in a pre-operative clinical trial (although I did only plan a lumpectomy before I agreed to the trial) as well, but not with an AI. I took black cohosh, an over the counter herb to see if it would shrink my DCIS prior to the surgery. When I was diagnosed with stereo-tactic biopsy, my lesion was thought to be 2-3 centimeters but when they did the LX it was found to be around 5mm in size. My MO (who heads this trial) was thrilled and was hopeful the black cohosh was the reason it shrunk. Can't be sure until they gather all of the data and the trial ends but hey, it was worth a shot to me. I was happy it was so small when they took it out. I did have to have a second surgery though because I was also in a clinical trial for partial breast rads and one margin was less than 1mm and they all had to be at least 2mm's in size to qualify.

I was treated at Smilow Cancer Center at Yale in CT. It is an NCI designated center. Here is the link to the black cohosh trial. https://medicine.yale.edu/cancer/research/trials/active/50-2.trial

percy4

Wow. This is VERY interesting to me. I had horrible hot flashes all through peri-menopause (10 years) and worse now in menopause. Just before my BC diagnosis, I had tried black cohosh. It took 8 wks to kick in, but then it really relieved my hot flashes. Fast forward to after DCIS/micro diagnosis. I asked if I could continue to take black cohosh for my hot flashes, and my MO, and another MO, told me it is NOT recommended for women who have had BC, in that is can act as a natural estrogen-enhancer. So. What? I'm really curious about the difference between what they told me and what has now been said, here.

percy4

Well. This is why we ladies are lucky enough to be here, on this site. To trade experiences, information given, etc.

calidancer

I'm curious why they are doing a study where they give women with active breast cancer an herb that seems to be estrogenic. Is it acting as a SERM? Why would it both relieve hot flashes and treat breast cancer? Very interesting.

Caber224

And it gets more interesting! April485, I was told NOT to take black cohosh, which I had taken for hot flashes before my DCIS diagnosis. My doctor did not want it to interfere with the estrogen blocking effects of the Letrozole.

So happy to hear about the reduction in the size of your DCIS area.

Thanks to everyone who has contributed to this conversation. I will update when I receive my six month results and complete the lumpectomy

april485

I was also freaked out when they approached me with the study because I knew that black cohosh was estrogenic. BUT, my MO states that this is the exact reason for the study. It would cancel out the effects of a natural estrogen apparently ( or something like that, I am so not scientific..LOL) and so it is precisely why she feels it would work. Fact is, my lesion did shrink so perhaps she is on to something? Not sure yet..too early to tell.

Edited to add that I took the black cohosh for only 19 days (they preferred 4 weeks but allow two weeks minimum) before my lumpectomy. So, if it did work, it worked very fast. But, as Annette said above, not sure imaging is always accurate so perhaps the lesion was smaller than they thought from the outset. Who knows?

april485

By the way, here is an article regarding the black cohosh study featuring my MO, Erin Hoffstatter and my BS, Anees Chagpar who heads the breast center at Yale as well as some other doctors here in CT who are studying capsasin (hot peppers) in the treatment/prevention of BC.

http://c-hit.org/2014/10/12/exploring-black-cohosh-hot-peppers-in-breast-cancer-treatment/

Mreeder

I think it is fantastic that you ladies are brave enough to find new alternatives to surgery. I do believe a cure is out there. I am 44 and was diagnosed with high grade DCIS on Sep. 10th 2015. I had a double mastectomy on Oct. 21. It was a large area of DCIS and it was recommended that I have a mastectomy on my left breast. I choose a double mastectomy as I have had a few fibrocystic changes in recent years. Each call back from my mammogram would cause so much anxiety. After the mastectomy I had to have a second surgery since some of the skin didn't survive. I'm currently waiting to remove the last of the four drain tubes I had and begin expansion. I have read from this forum all throughout my diagnosis and treatment and all of the stories have really helped me get through the tough times. I'm sharing my story in hopes that it will help others. The anxiety that comes from the diagnosis is by far the worst part. it does get better with treatment

simsoka

Wondering (referring back to april485's and Caber224's posts) ... does this mean that letrozole and black cohosh may have the same estrogen-cancelling effects?

april485

Not sure Simoska because I took the black cohosh for a very short time (19 days) prior to my lumpectomy and it was in a strictly monitored clinical trial. I now take letrozole post surgery and post radiation. I took exemestane for almost 2.5 years but had a very hard time with the side effects and the joint pain was really bad. I have only been taking letrozole for a few weeks so not sure how I will fare...so far, a few aches and pains have started and I have a bit of a harder time falling asleep but other than that, so far, it has been ok. We shall see...