OncotypeDX

EngJojo

Hi all! I just got my pathology report and spoke to my surgeon today. He says I'm past Oncotyping as I have 2 of 4 nodes positive. What the what?! I thought you could still Ocotype with up to 3 nods positive. My report says "metastatic lobular carcinoma was identified on routine histologic slides in D2 and D3 where the D2 tumor was 0.7 cm and the D3 tumor 1.8 cm in size." That is regarding the two lymph nodes. The breast tissue says, "the breast tissue was extensively involved with multifocal invasive lobular carcinoma. The largest grossly visible area of tumor measured up to 3.2 cm. However, there were numerous other smaller microscopic foci of invasive lobular carcinoma present throughout the breast tissue." It then goes on to say in summary, "TUMOR SIZE: (grossly visible tumor size with additional multifocal microscopic tumor not included). GREATEST DIMENSION: 32 mm, ADDITIONAL DIMENSIONS: 25 x 21 mm"

Do you all think Oncotyping is right or no? I do not have a formal stage yet, but I assume it is IIA from the charts I've seen. One of my lumpectomy margins was not clear of ILC so I will be getting re-excision; or, maybe MX. Hmmm, decisions, decisions. Thoughts on that are welcome too!

MexicoHeather

My Oncologist didn't bother doing oncotypeDX either. He said it wasn't going change the treatment plan, which was to throw everything at it.

Meow13

I believe oncodx will do a scoring for you with 2 positive nodes. Insurance should pay I would tell them you want the additional information. I had 2 tumors that were thought to be multifocal as in connected. I was told mastectomy even though each was 1cm. Well turned out 1 tumor was ILC and the other IDC. No other cancer found anywhere else. Not typical ILC even though tubule features absent the tumor was not spread over a large area, largest measurement was 1.1cm. I had the oncodx done my score was 34, I think they sent the ilc tumor sample. I chose no chemo even though it was strongly recommended. I was glad to have all the information I could to decide on treatment. Doctors seem to forget you have the final say not them. I am on year 8 cancer free.

The MRI I had was 100% representative in my case, I guess it isn't always that way. I could of gone lumpectomies and radiation but I really won't have known for sure without the mastectomy. I did DIEP afterwards.

My er was 95% pr 0%, also her2 negative.

AliceBastable

I could be remembering incorrectly, but I think the tumor has to be under 2 cm to qualify. So it wouldn't be the nodes, but the size.

Peregrinelady

I believe it is up to 5 cm for size. Mine was 2.5 and I had the oncotype done. I think it has more to do with the oncologist's preferences.

Salamandra

Different doctors have different opinions on when to order an oncotype. If it's important to you, I would seek a second opinion and have them explain why they think it *could* impact treatment options (if they think so), and how. I don't love to try to change a doctor's opinion/practice - I think it's usually more trouble than it's worth and the benefit you get in the end is unclear if they're not fully bought in on the plan.

OCDAmy

I had two nodes and a larger tumor and had Oncotype. It came back 18, at the time that was the gray area. We decided to move forward with chemo because those nodes scared me.

Murfy

Oncotype helps determine recurrence score and benefit of chemo in addition to hormone therapy. I'm guessing your surgeon is already thinking chemo. A second opinion from an MO is probably warranted.

EngJojo

Thank you all for the information. The tumor board is reviewing my case tomorrow morning and I hope they decide to Oncotype. I will update the post as I find out.

bcincolorado

Sorry you are dealing with this. I had what was very dense breast tissue and they first thought was very small and had lumpectcomy. Not clear margins. Then had re-excision since was still trying to avoid mastectomy. After that round and not clear they said it had to go. I had NO node involvement. Final pathology showed tumor was 5 cm and not ..7 they first thought and small.

After my MO retired I got a new one who took over at the same practice. My new MO still thought I should have been advised to do radiation therapy before reconstruction even attempted due to tumor size. Why no one mentioned this I do not know.

Bottom line--make sure you talk to ALL your docs so you can have all information and make an informed decision for YOU. As a nurse I know who has breast cancer said to me "do not let the doctors bully you into a decision" and you should be allowed time to do what is best for YOU.

Good luck to you.

Haliday

I had two positive nodes (of two harvested) and oncotype was immediately ordered. With a score of 9 and 12% chance of distant mets in 9 years, no chemo for me. Starting 16 sessions radiation on May 28, followed by Arimidex for 10 years. Hope they do the oncotype for you.

CBK

I would think we all should receive oncotype. I was somehow passed over for oncotyping at my hospital. 2cm tumor, margins clear, no node involvement! Stage 2A.

When I went to meet with oncologist she was like “ where is your oncotyping”? Yeah where is it? She got it done. I don’t even want to tell you how high it came back. Look at my signature on the chemo regime I had to go through, and there you have it!

Thank God I have great care at my hospital and otherwise. Genetic testing and oncotyping should be mandatory! If I didn’t have both, my decisions would have been radically different.

Meow13

cbk, most insurance will pay for the oncodx test, if you meet the requirements, I don't understand why some oncologists make the decision to go right to chemo without atleast seeing the results. For me, I want as much information as I could before I decided my treatment. My insurance however would not pay for genetic testing because there was no family history. I think it is wrong to do that, just because no one you are related to got breast cancer doesn't mean you don't have brca1 or 2 or other known genes.

Also I am not happy that my oncologist never told me the dangers involved in hormone therapy. If I ever face this disease again I will atleast know what to expect. Thank God for this site and others.

CBK

Meow.

I did have it all done prior to treatment! Genetic testing gave me the Brca mutation.

But oncotype testing gave me more.

Tell me what you are upset about with hormone therapy?

Thanks.

Meow13

I am upset with the 2 root canals and the lingering achy joints particularly at night. I have been off hormone AI drugs for 3 years and my skin, hair, teeth and general health are not what they were before diagnosis. I am not saying I would not have taken the drugs but I wish my doctor had been more up front with the potential permanent side effects. I like the cards on the table I don't need someone to withhold possible unpleasant side effects.

I am glad I received my oncodx score and had the math background to interpret the results. I am also glad that I have researched and met knowledgeable people to help me understand my diagnosis.

jessie123

Engjojo --- I also had 2 multifoci microscopic tumors and LCIS after my lumpectomy for ILC. I want to know exactly where they were because I wonder if they could be from needle seeding during biopsy. The radiologist kept dropping my tumor and the pathologist report at biopsy reported innumerable microscopic pieces of tissue received that he could not test because they were too small. How did they know that you had LCIS throughout your breast when they just took out a portion of the breast? I worry about how much LCIS I have, but it's not cancer so I need to let that worry go for now. My tumor was 2.6 cm (close to yours) , but I didn't have node involvement. My oncotype score was 19 and reoccurrence score was 6%. I did not need chemo. I do think that you won't regret getting the Oncotype test done --- good luck

EngJojo

Hi jessie123. I had a quadrantectomy (partial mastectomy) and the path report says:

*9.5 x 6.2 x 5.5 cm, 132.8 g quadrantectomy specimen

*LOBULAR CARCINOMA IN SITU (LCIS): Present and extensive

*MARGINS:
INVASIVE CARCINOMA MARGINS:
DISTANCE FROM CLOSEST MARGIN: Invasive lobular carcinoma
focally involves the superior margin
LCIS MARGINS:
DISTANCE FROM CLOSEST MARGIN: LCIS focally involves the
inferior and medial margins

So, I have ILC on the superior margin of my excision and LCIS on the inferior and medial margins. They plan to "clean up" the superior margin but consider the other two margins clear since LCIS isn't cancer. But, I want it all gone!

I am glad you didn't have to do chemo! I sure wish that was my case. I see my oncologist for the first time today and I also am actively seeking a 2nd opinion from the Dana-Farber Cancer Institute. I would really like to have the Oncotype score but it isn't looking promising.

jessie123

Engjojo --- Your are so lucky that you have access to Dana-Farber -- That is a good idea to get the second opinion or even use them as you doctors if you like them better. Your pathology report is so different than mine. I think there are 6 margins and mine listed the size of each margin. From what I can tell they took out about a 3 inch by 4 inch section of my breast tissue and then sectioned and labeled each section. Mine didn't say where they found the LCIS or even the little foci. It's so frustrating. I'm glad I got the lumpectomy because losing one or two breasts seems horrible to me, but if I had to have another surgery and knew I had LCIS I might consider a mastectomy. I know lobular goes to the other breast more often, but I was willing to risk that. However, I didn't know about the LCIS that puts us at greater risk of both lobular and IDC. Who knows if I have LCIS in the other breast -- they can't image it. So now I will be monitored regularly for the rest of my life. Am I going to be having MRI's when I'm 85 or 90? I really will be interested in what Dana Farber recommends. After you get back will you pm me so that I don't miss your post.

Teaberry11

Engjojo - I had the mammaprint done instead of oncotype Mammaprint will give result with 1-3 nodes involved I also had 2 positive nodes and multi focal ILC (2.1 cm and 1 cm) My Mammaprint came back with a low score therefore NO chemo. Please ask for this test!

EngJojo

jessie123 - I am not going to Dana-Farber, I am doing the remote 2nd opinion. You can access a link from their website if you are interested. I will definitely let you know what they say though.

Teaberry11 - I ditched the first oncologist I saw this past Monday. He had not looked at any of my records and stepped out of the room at least 6 times to get his colleagues' opinion. I was not impressed. I called another oncologist yesterday morning and they got me in. I really like her so I'm keeping her! She is ordering Oncotype for me too, so that's great!