I say no chemo what do you say..

diharp

Hi I am new here. My Oncotypex score was 17, Left mastectomy, 5 out of 12 lymphnodes involved. her2 neg, estrogen positive 95 %. Tumor size 5.7mm. I am still not sure if chemo is the answer if I am taking estrogen blockers. If they had not found more in my lymphnodes then I would not do chemo. Now I am undecided. My first lymphnode dissection only showed a smidgen of cancer, if I am told the other lymphnodes only show cancer? I am afraid if I do chemo then cancer will return more aggressive then if I don't. Besides if I do chemo I still have to work, I am 53 and single. No one to take care of me but me. I have to be able to make a strong decision here..

Found 4 out of 12 lymphnodes with cancer.....

Thanks for listening....

Studying all this info is worse than being back in school.

Pessa

I am single and at the time of my diagnosis and treatment had sons age 10 and 13. No family in CA . I was able to work full time during chemo. I did leave work early on the days I had chemo. Friends shopped for food for me and prepared some dinnersand took the kids to school. It was doable.

gracie22

I don't have hormone sensitive cancer so no experience with your situation. Others will chime in with good info. From what I have read here, some feel that a big tumor w nodes should always get chemo, other say that it is better to rely only on the biology of the tumor; chemo does not always work on slow growing, grade 1, high ER/PR positive, HER2 negative tumors (Luminal A) and anti-hormonals work best, but with a grade 2 and PR negative, your situation may be different. You may have a Luminal B tumor. Luminal A usually means low grade, and high ER and PR with less response to chemo and less chance of distant recurrence (generally speaking.) Luminal B is more aggressive, and your PR-, grade 2 status might put you in that category. Chemo would be recommended for that. It's not absolute; there have been posters who are ER+ and PR- and still classified as Luminal A. Since your Oncotype is in the mid range, the Mammaprint might help make a decision as it assesses you as either high risk or low risk--no mid range.

diharp

Thanks Gracie for your input.

diharp

Did anyone ever thinkabout not doing chemo? I am so afraid that cancer will come back more aggressive. why not wait to see if it rares it's ugly head again and then go for chemo and radiation?

just a thought here. Just trying to make since of it all. Some women get cancer again even after chemo and radiation and then start the process all over.

Thanks Pessa for your input, you made it sound doable..

gracie22

It's a really personal thing. This website is devoted primarily to discussions between people who have opted to do the standard of care recommended by their doctor and their own research, so the advice from most will likely be to get guidance from a doc you trust and a second opinion, do your research, and then make the best decision you can in view of your own situation. Everyone agonizes about treatment options. We have all had our experiences with friends and loved ones who had good and bad responses to various health care treatments and that affects how we feel. Some people have existing medical conditions beyond the breast cancer that influence choices. Some are at an age where they do not want to seek treatment beyond surgery. Some simply do not feel at peace with recommended treatments and may opt out. It's not easy. As to your question about waiting, according to most info, cancer is most treatable when it is limited to the breast and lymph nodes. If it recurs outside of the breast, (metastasizes) and spreads to the bones or other organs, treatment would be necessary for the rest of the patient's life to try to avoid further spread. Hence the standard advice to hit it hard in its early stages. There is no guarantee that doing so will avoid eventual metastasis, but your oncologist can give you more specific answers about the statistics for your particular case. Good luck!

ChiSandy

Oncotype of 17 is at the high end of “low-risk,” not “intermediate.” Surprised it was that low given the PR-, grade 3, and nodal involvement--you say "5 of 12... involved," yet your profile says only one was biopsied and it was positive. Which is it? I thought they don’t even order Oncotype if you have more than 3 positive nodes, especially with a tumor that large. At 53, are you otherwise strong & healthy with no comorbidities that chemo would exacerbate? That Oncotype score doesn’t gibe with the tumor size, grade & profile. I’d ask for a MammaPrint or Prosigna before saying yes or no to chemo.

wrenn

The tumor is in mm so not large. I agree with 2nd opinion if you are able and go prepared with lots of questions. Best of luck on a difficult choice

NancyHB

"why not wait to see if it rares it's ugly head again and then go for chemo and radiation?"

The hope is that we treat cancer once so it doesn't come back. Because if it does come back it's often a distance or metastatic recurrence (often called Stage IV). At that point chemo often becomes "for life", and radiation may or may not be recommended. Aggressive treatment now is intended to try and keep that metastatic recurrence from happening.

I can see where you might be confused about whether or not to do chemo. An Oncotype score of 17 is at the high end of low risk (0-18), yet you appear to have 5 nodes involved and a Grade 3 tumor (*you say in your post the tumor was 5.7mm but your stats say 5+ cm which is confusing...). It sounds, from your description, to be small but aggressive. I, too, am surprised your surgeon sent the tumor off for Oncotype testing, as it usually only applies to those cancers with 3 or fewer nodes involved. Typically, with more than 3 nodes involved chemo is recommended, regardless of size. What is your oncologist recommending in the way of treatment?

I'm not advocating you choose chemo with an Oncotype score of 17, and I don't feel I can offer my opinion as I'm confused by your stats (size and node invovement). I only wanted to explain the concept of "waiting to do chemo/radiation until it comes back". Make your treatment choices based on the information you have in front of you now, rather than waiting to see if it comes back.

On another note, it would be helpful if you could update your statistics to reflect your current diagnosis, as there appears to be confusion about the size of your tumor and node involvement. Thanks!

pupmom

Her profile says CM not MM. I also am confused by the node situation. Did they think there were 5 nodes involved, and then discovered only 1 was. As Sandy said Oncotype DX is usually not ordered for those with more than 3 positive nodes. I also think, but not sure, there is a limit to how big the tumor can be.

muska

Based on OP's profile there were two surgeries and the lymph nodes were removed during the second surgery. So I suppose Oncotype was ordered after the first surgery. Five involved nodes and large tumor size (5+ cm) warrant chemo no matter what the oncotype test says (btw, the test was not administered correctly because not all the factors were accounted for.) Also, radiation should be discussed too if the nodes were involved.

That being said, it's been a while since the surgery and chemo is usually started within two months.

NancyHB

The OP's original post says, "Tumor size 5.7 mm" yet her stats state 5+cm, which is why I asked for clarification. I could understand the tumor being sent off for Oncotype testing if it was 5.7 mm with a "smidgen" of cancer in one node - but not if it was 5+ cm.

It's been about 6-7 weeks since MX, which is why there may be questions about chemo now (my MO waits 6-8 weeks post-MX prior to chemo). I'm curious to get a better understanding of the size of her cancer, as well as what her oncologist is recommending.

Regardless of size and node status, chemo is still a personal decision we make.

diharp

Hi everyone, yes the tumor on the report is listed as 5.1 cm. Yes They did a second surgery. so I corrected the lymph nodes.

The oncologist is pushing for chemo and radiation.

Thank you Nancy, your statements were very helpful.

I will be talking with the oncologist tomorrow to see what the new recommendations are.

I will take the weekend to think all this through. The nodes kicked the oncotype 17 out of the water after surgery , I guess my risks just went up.

diharp

My name is is diharp, not OP'S.

I chose to delay all till I could understand the facts. They wanted me to start chemo already, but it just didn't add up to me. I just came here

for a little more knowledge. My nodes were taken out Sept 7.

pupmom

diharp, OP means Original Poster. Also, I want to point out that DCIS (in your profile) is NOT invasive. When cancer is invasive it becomes IDC, or ILC.

diharp

Thanks yorkie mom, Both are used in my report so I guess I won't know till tomorrow if it is

DCIS OR IDC. One line says Invasive ductal carcinoma, under left mastectomy. Under the Tumor line it says DCIS.

That is all I know and that is the report after my mastectomy of course.

pupmom

diharp, I was very confused about all this myself right after diagnosis. It's a steep learning curve! Hugs!

Wanted to add that I had IDC and DCIS in my tumor. So maybe that is what's going on in your diagnosis.

diharp

Yorkiemom,

Thanks again for your kindness..

NancyHB

diharp, thank you so much for the clarification, it helps us understand the true nature of your diagnsis so we can offer appropriate suggestions. I hope the conversation with your oncologist goes well tomorrow. It's truly hard to reconcile your large tumor, aggressive grade, and number of nodes, with your Oncotype score. On the other hand, I originally had a 1.3 cm tumor, Grade 2 and no node involvement, and my Oncotype score was 42 (which bought me chemo, too). Sometimes there is incongruity between tests. It's good you have a few more days to consider your options.

Chemo isn't easy, but it is doable. I've done it twice now, neither time was a walk in the park but I want - and need - to do everything offered to ensure this doesn't come back a third time. I feel as though you're hoping we can give you reasons not to do chemo, but I have to say given the size of your tumor, the node involvement and the grade, I wouldn't hesitate to encourage you to strongly consider chemo (and probably radiation, too). I say this as someone who - even after a local recurrence - still has faith in these treatments.

Beesie

diharp,

It is a steep learning curve. As yorkiemom points out, there is no such thing as 'invasive DCIS'. However most IDC (invasive ductal carcinoma) develops from DCIS (ductal carcinoma in situ) so it is very common to have both DCIS and IDC together. When that happens, the diagnosis is identified by and treated based on the more serious condition, the IDC. The DCIS needs to be removed but other than that, it is ignored, because anything done to treat the IDC will be more than sufficient to address the DCIS. So a diagnosis that includes both DCIS and IDC is always identified and treated as IDC.

Additionally, an in situ cancer (DCIS) cannot travel to the nodes. So with nodal involvement, the diagnosis by definition is invasive cancer (even though some DCIS might also be present).

Let us know what you find out at your appointment tomorrow.

diharp

Finished with Oncologist. I am stage 3 IDC Tumor was 5.1 cm. My lymph node surgery moved me up to stage 3.

I guess this answers my own question, Chemo is a positive.

KBeee

diharp, chemo is doable. I also have done it twice. I worked, exercised, and made it to all Of my kids' events. I made time to rest and accepted help when friends offered. I strongly recommend joining the chemo group for the month you start. My Sept 2013 and March/April 2015 chemo pals were (and still are) my sanity savers. We still communicate often. Best wishes