Clinical Trial suggested by BS, don't know what to do?

tonya845

Hi Ladies, was diagnosed with DCIS in August, had 8 rounds of chemo, had mastectomy of left breast on Dec 18th, and a sentinel core biopsy. 5 nodes were taken, 1 had cancer. Also the tumor in the left breast was much larger than they originally thought. When tumor was taken out it measured 7cm, so they feel chemo did not work effectively for me.  My BS wants me to try a clinical trial for Low dose Chemo with aspirin in either Vermont or Brooklyn. I really don't know what to do. I start Radiation next week and also will need to take tamoxifen for 5 to 10 years. Please give me some advice if you can.

keepthefaith

tonya, I don't have any experience in DCIS, but maybe you could get a second opinion...? Sometimes it just makes it more confusing. Good luck with your decision; I know it's not easy.

SchoolCounselor

hi Tonya,

I agree with keep, it sounds like you need a second opinion. Good luck. Hopefully someone is familiar with what your BS is recommending. 

Beesie

Tonya, 

If you had chemo, then you must have had invasive cancer in addition to DCIS.  Chemo is not prescribed for pure DCIS.  It's very common to find DCIS and IDC together; when that happens, the diagnosis, staging and treatment are all based on the IDC, since that is the more serious condition. The DCIS is pretty much irrelevant, except that it needs to be removed.

So the DCIS women here in this forum have not faced the issues that you face and unfortunately won't be able to offer advice.  You might want to repost your question in the IDC (Invasive Ductal Carcinoma   forum or perhaps the Chemotherapy - Before, During and After forum.  

Good luck with your decision.

ziggypop

Hi tonya - 

I am a bit unclear as to why they did chemotherapy for what they thought was DCIS, did they give you a reason for that?

I had neoadjuvant chemo - but they knew that I was going to have to have it no matter what as I was IDC and multiple nodes were positive based on FNA. They thought that they might be able to shrink the tumor enough for a lumpectomy. 

Eight rounds of chemo for what they thought was DCIS just seems extreme and because of that I would question this suggestion (unless there was a good reason for the first suggestion) all I can say with this information, is that I would get a second opinion. After my mastectomy the path showed that the tumor had shrunk from 9cm to about 4/5 cm and I had 2 positive nodes .My surgeon said that this made me borderline for rads - usually 2 positive nodes is borderline, but given that I had already had chemo, he suggested that Rads would be a good idea. But a secondary chemo? That seems a little outside the norm in terms of aggressive treatment & given that the initial chemo seems outside the norm in terms of aggressive treatment as well - yeah I would get a second opinion.  Did they ever do a PET scan or any type of full body scan?

Beesie

ziggypop, tonya had a positive node, so the diagnosis had to have included invasive cancer.  DCIS cannot travel beyond the breast into the nodes.  So this is not a DCIS treatment discussion. 

ziggypop

hey beesie - knew you would be along to help out ; ) . I understand that at this point it's not a DCIS treatment discussion, I'm just wondering if there isn't a pattern of aggressive treatment (which is okay in my book - I'm for the most aggressive treatment possible, but the patient needs to know if the docs are being more aggressive than the standard). That's why I wondered about the original treatment of chemo (just seems  a lot for DCIS - but might have really good reason) combined with this second suggestion (which also seems somewhat aggressive based on a comparison of my own treatment). So for me personally in this case, I'd get a second opinion - just to know if I were opting for something that was beyond the standard recommendations.

I do understand that the docs might be thinking that if the chemo wasn't effective (which is hard to know if there wasn't a SNB before it) that it may be necessary to deal with any possible distal micromets. In general, however, people don't know if chemo is or is not effective & in my case I had 2 positive node after it & more chemo was still not recommended - that's what's swaying my advice for a second opinion. 

Moderators

Tonya, please let us know if you'd like us to move this thread to another forum. We'd be happy to help.

You can read much more about clinical trials, including their benefits and risks, how they're conducted, and what you should know before you decide to participate, at the section Clinical Trials on the main Breastcancer.org site.

• The Mods

fredntan

okay you did chemo first......after mastectomy your path is just back.......7cm mass 1 positive node. i am not sure of your staging. i dont like that the mass was still 7cm.  I would get more chemo. a low dose chemo wont be as hard on yourbody as your first round. but talk to another oncologist. you can fly anywhere. google corporate angels. cancer pts fly free to cancer appts on corporate jets. helps if you are going between big cities. 

Beesie

ziggypop, I'm concerned that this discussion about chemo for DCIS, and a post-chemo diagnosis of positive nodes, is going to confuse and concern women with DCIS.  It's not that chemo is an aggressive treatment for DCIS.  It's that chemo is not a treatment for DCIS. 

I looked back at one of Tonya's posts from August, when she was starting chemo.  Her diagnosis line states "DCIS Stage IIIB" .  Since pure DCIS is always Stage 0, clearly the diagnosis from the start included invasive cancer and that is why chemo was prescribed.  So at no point has this been a DCIS treatment discussion.  I think it's very important that this is clear because I've seen too many DCIS women scared out of their wits when this hasn't been clear.

ziggypop

Gotcha beesie. I was not aware of the stage 3b - was only going by the diagnosis of DCIS which is why I did not understand the chemo. Thanks. 

Tonya, It may be that your first diagnosis was DCIS, but it changed? In any case. if it was at any point stage 3, it would be better to switch the thread to there or as the mods suggested to clinical trials. 

Beesie

ziggypop, there are a lot of women on this board who show diagnosis lines that state DCIS with some stage other than Stage 0.  It could be that an initial needle biopsy found DCIS only but then surgery uncovered some IDC as well, changing the diagnosis from DCIS to IDC and changing the stage.  Or it could be that the diagnosis right from the start included both DCIS and IDC - this is very common. The term "DCIS" from a doctor or on a pathology report tends to stick out a lot more than the words "invasive (or infiltrating) ductal carcinoma" - IDC is rarely abbreviated on pathology reports and I think that's why DCIS is often picked up as being the diagnosis in cases where both DCIS and IDC are found.  

I wish that the diagnosis function in our profiles on BC.org didn't allow for DCIS to be entered along with any stage other than Stage 0.  And while I'm at it, I wish that DCIS-Mi was available as a diagnosis option.  It would clear up a lot of confusion.

tonya845

thank you for all your thoughts, yes it is considered ICS, sorry I didn't put that. Stage is 3 (8/9). Can you please move my thread to ICS if that's possible. thanks so much

Susie123

Hi Tonya, Don't worry about getting the type of cancer wrong. There's so much to learn with a breast cancer diagnosis. Your stage 3 is most likely IDC or maybe ILC. As the mods suggested, the clinical trials thread would be the place to go. Other women who are in the same place as you, either considering a clinical trial, or actually in one now, connect there. I'm sure they would be happy to help. My best to you in whatever you decide. Susie