Anyone have a medical team who can't decide what you should do?!

agfischer

I am a 43 year old, recently diagnosed with a small 3 mm. IDC, grade 1, ER+PR+, with a family history of breast cancer. The mix of my younger (not young) age, small size of tumor, plus family history has my oncologist, breast surgeon, and even the tumor board at the hospital, unable to say what the best course of action is. This is a bit frustrating for me, as the choice is basically mine, and unfortunately, I didn't go to medical school. ( -: I am very glad that we are past the age of Doctor's Know Best, but it sure would have been nice to get some guidance, other than, literally, I don't know what to tell you.

Just venting mostly, but if anyone else has been in a similar situation, would be happy to hear how you handled it.

joyandpiece

Do you have another choice of BC teams in your area? If so, I would consider getting a second opinion from a new group. If you have the time and resources, you might consider driving a ways for this. I have heard of some people driving hours to see their doctor if they felt it was a good fit. Best of luck

Denise-G

I'm a firm believer in a second opinions. Sending my best!

ChiSandy

You should ask your team to order genetic testing for familial mutations, and get a rush order on the results--that should influence your surgical decision, especially if your testing indicates advisability of prophylactic surgery or surgeries. Once you have the surgery, I would also push for OncotypeDX testing despite the hormone-receptor status (do you know HER2 status?), low grade and tiny size--which would normally mean no need to order ODX because chemo would be unnecessary. Your age might justify determining the aggressiveness vs. indolence of your tumor via the genetic assay of ODX and if your score is low, that would reinforce the decision to skip chemo. I’d be very, very surprised if your score were even in double digits, much less anywhere near intermediate.

BarredOwl

Hi agfischer:

I am sorry you are not receiving much guidance. A different team may more effectively communicate the issues.

You noted in another thread that they did not do a sentinel node biopsy, despite finding 3 mm of IDC. As I explained in that thread, current consensus treatment guidelines for breast cancer from NCCN and ASCO include sentinel node biopsy for invasive disease. Even smaller, lower grade tumors may have the ability to spread to regional lymph nodes and distant sites. Because of this, treatment guidelines do not include any exception to SNB for either low grade and/or small invasive tumors. If you have not yet received a sentinel node biopsy for IDC that is "T1a" in terms of size only (Tumor > 1 mm but ≤ 5 mm in greatest dimension), this appears to be unusual and alone would warrant seeking a second opinion.

Your post above is another reason for seeking a second opinion.

Best,

BarredOwl

ChiSandy

I believe the OP didn’t mention that she has had surgery yet, nor settled on its extent. I would assume that whatever she elects, SNB would be part of that.

BarredOwl

Hi ChiSandy:

I would have assumed that as well, except that I've read and replied to OP's previous post here, which is where my knowledge of a surgical excision and no recommendation for SNB comes from. Had I not seen the earlier post, I would also have asked about HER2 status, which is apparently negative:

https://community.breastcancer.org/forum/96/topics...

BarredOwl

agfischer

Yes, I was the one who was questioning no node biopsy. (- : I actually met with her again recently and she agreed to do one. She also told me the oncologist had called her to get her opinion about what to do with me. (-: Since even the tumor board can't decide, I'm not very hopeful about a second opinion being of any further help, since in essence, I got a whole bunch of opinions from the tumor board, which were the same as the oncologist's - "we don't know." I asked about Oncotype and was told that (1) the tumor was likely to small to do the test on and (2) that the low grade would trump the Oncotype. I've been holding off telling my son (7 years old) yet as I was hoping to have a definitive plan of what we were going to do, but alas....

Also, thank you for your suggestion to ask the surgeon why she felt no lymph node biopsy was warranted - I did that and it led to a good discussion with the conclusion being that we would do one. (-:

agfischer

Joyandpiece, I do have the option of this - I live in a large city, I've just taken so much time off of work already for appointments. I don't suppose oncologists make house calls? ( -:

ChiSandy, I am HER-. I had an excisional biopsy which turned out to be a de facto lumpectomy as they got it all in the biopsy due to the small size.

Thanks, Denise-G, the best to you as well.

BarredOwl

Hi agfischer:

Thank you for the update. Hopefully, the nodal status from SNB will be totally negative, but if not, the results could affect understanding of risk profile.

SNB should be performed by an experienced team, so you may wish to ask about how many such procedures your surgeon does annually. Also, be sure to inquire whether nodal status will be assessed intraoperatively (during the procedure), and if so, what would be done if one or more nodes were found to be positive. In some cases, a surgeon may proceed immediately (in the same operation) to remove additional levels of lymph nodes (Axillary Lymph Node Dissection ("ALND")). However, some clinical trials suggest that in the appropriate case, axillary radiation (with potentially less morbidity) is a suitable alternative to ALND. Thus, it is best to discuss the various options in advance, and to be on the same page regarding the approach to be taken.

BarredOwl

coraleliz

The tumor board could not agree on RADs or chemo for me. Neither could my team. The decisions were left to me.

ladyb1234

I'm a believer in a second opinions especially if you are not given the guidance and/or information required to make decisions. . I had a rare presentation of BC and needed to get a second. I had two different boards review my information.

Hoping the nodal status from SNB is negative!

ShetlandPony

In my opinion, it is not right for the doctors to put the burden of decision-making on you like this. We go to doctors for advice because they have training and experience that we don't. Yes, we should be part of the team, but geez, if they don't know what to do how are you supposed to know? No, they don't have a crystal ball, but they should be able to discuss the issues with you and have the guts to give an opinion. I fired my first onc and one of the reasons was that he would say, "It's up to you" when there was a decision to make. This process of forming your treatment plan is very important, and if I were you I would miss work and get a second opinion from a really good place.

dlb823

I'm not only a firm believer in second opinions, but I would go so far as to suggest you get one at an NCI-designated cancer center. These are the places that see the most bc, so logically will have the most experience with women with your subset of factors. They also have docs who focus only on breast cancer, so again will have much more specific experience to draw on and to guide you. Here's a list of those facilities. Hopefully, there's one within a few hours drive of where you live.

http://www.cancer.gov/research/nci-role/cancer-cen...

If there isn't one within a reasonable distance, you might try calling the closest one and seeing if they can recommend an onc in your area. This isn't quite a good as actually going to one of these top-notch places, but they won't recommend anyone who hasn't been through their type of rigorous, detail-minded training, which usually results in more thorough workups to help decide the best course of tx.