Do 2 positive LN always = chemo?

Taralynn

Hi! I’m not sure if this is the right board for this question. My final surgical pathology left me at stage 1B. The surgeon seems to think chemo is a must, because of two positive nodes out of 8 removed. One with macromets (3mm) and one with micromets. I don’t even think they did an oncotype test which saddens me because I was curious what the score would be. I guess that’s not good enough reason to request it though lol. I’m still waiting to see the oncologist but just wondering if anyone has had my stats (in my signature) and not had chemo? Thankw

Rambros

You should be able to ask your MO to order the test for you, but I think you will find that most oncologists will recommend chemo based on your age, tumor size and 2 positive lymph nodes even if the score is relatively low

Beesie

2 positive nodes do not always mean chemo. This is exactly where the Oncotype test would come into play.

But... the Oncotype test recurrence risks are based on the "average" patient. What this means is that if someone is far off the average, the recurrence risk estimate that is associated with their Oncotype score might not be all that accurate. This is why Genomic Health (the Oncotype people) make available to MOs a simple, quick computer model that allows them to adjust the recurrence risk based on addition factors - patient age, tumor size and tumor grade. This is called the Oncotype RSPC (Recurrence Score Pathology Clinical) model. I know that this model is available for those who are node negative who've received an Oncotype score & recurrence risk; I don't know if a version of the model exists for node-positive Oncotype scores. But the same principles would apply.

In your case, even without the model, it's clear your pathology & clinical factors would increase your risk. Your age, being 39, is much younger than the average - and this will increase risk. Your tumor size, being 3cm (according to your signature line) is much larger than the average - and this will increase your risk. So let's say you had a low Oncotype score of 10. From the reports I've seen on-line, this would confer a 12% 9-year recurrence risk, and a recommendation that chemo is not beneficial. But then if you factor in your age and your tumor size, that 12% recurrence risk (for the "average" patient) might jump up to 20% for you - and with a 20% risk, chemo would be recommended.

This I think is why the Oncotype test wasn't ordered - it would just muddy the water and possibly complicate the decision. But maybe your MO will order it. Honestly, however, for someone who is 39, and who has a 3cm cancer, and 2 positive nodes, I don't think any MO would not recommend chemo.

DanniB

Hi Taralynn - i have a very similar diagnosis to yours tumour is 1cm, 2/4 nodes with cancer: one 6mm and the other 3mm and i am also 39. I had the oncotype test done and got a fairly low score of 16. My oncologist has advised on having a short version chemo with 4 sessions of Taxol (instead of originally planned 4xAC plus 4xTaxol) which i am currently on. I was given an option of not doing it but the benefit was a further potential reduction of recurrence by up to 5% which i couldn't ignore.

Best wishes to you with your treatment,

Danni

Taralynn

thank you all!

Beesie, you’re always so informative thank you! So an oncotype can be requested after all pathology is complete. I assumed no.

DanniB, we are definitely in similar boats. Originally the MO mentioned a 4 + 4 regimen possibility after surgery. I think he probably meant AC then taxol. That’s when we thought (and he was almost positive,!) that the cancer was double the size. I’m very curious what his suggestion would be now. How are you doing on the Taxol??

DanniB

Taralynn - I had my 3rd session on 31 Dec. Im on accelerated Taxol protocol every two weeks done over 3 hours per session. Dr thought given the age and general health i will manage this and so far i have. I had an allergic reaction right at the start of the 2nd session but this was managed with extra steroids, antihistamines and slower drip so thankfully we were able to continue. I have to take additional prep in advance now and 3rd went ok too. For me, there was definitely a cumulative effect after the 3rd session. I chose not to cold cap so my hair was gone between the second and third treatments (body and head). So far I had 3 to 5 days each treatment of bad muscle aches and non working tummy, about 5-6 days of nausea after the chemo (tablets controlled well and no major issues eating) and after the 3rd session i had 1 day of sickness (about 3 episodes). These were the worst issues for me (the only bother i had from loosing the hair is inflamed scalp for a couple of days beforehand, aesthetically it didn't bother me much). Second week after all sessions so far i felt 90-95% normal, could do home bike exercise and pilates and even use the brain lol. Hot water bottle has been my best friend, most time better than the pain relief.

So, overall, i think i am doing ok with an occasional slip-up of a tough day. Did you do the genetic testing (if you don't mind responding)? I noticed in your signature that you had a prophylactic mastectomy.

Taralynn

thanks Danni!

My genetic testing was negative, but I chose to do the BMX for various reasons. My MO initially said chemo every 2 weeks, so I’m wondering if he did have Taxol in mind. Sounds like you are doing well, so glad to hear it!

I was just googling about cold capping actually. Seems people on Taxol do have good luck with that. If that’s even when I’ll be given, I’m jumping ahead too far

DanniB

Best of luck Taralynn, do reach out later if you get Taxol in case i can help

kathabus

Hi--I was 43 at diagnosis, 2.5 cm, only had 1 node out but it had 8mm. I will tell you from my insurance perspective, they refused to pay for the oncotype because they saw my situation as automatic chemo. My oncologist (MO) argued this, I really wanted that piece of information, and we ordered one anyway.

While we were waiting for the test, I did a lot of research, understanding the SOFT trial, etc. I made a decision in my own mind that my oncotype had to be 1-10 for me to skip chemo. Wasn't sure what my MO was going to say.

So the test came back as a 10. My MO suggested no chemo with a 10, but wanted me in menopause and on an aromatase inhibitor. With that being said, I knew that I could get a second opinion that would suggest chemo. I knew that. But I was okay with the direction we took things. However, since I did not do chemo, I did a hyster/oopherectomy fairly quickly after radiation and got right on that aromatase inhibitor.

I guess in my situation it did kind of "complicate" things because without the test I would have automatically done chemo. No decision to be made. BUT...information is power. And even if you would do chemo no matter what....I would argue that that's ok. Get the test anyway. I feel like it's our right to know these test results (if we want them).

Additionally, it might even help you make treatment decisions in the future. Who knows. The future with cancer is tailoring it to your specific biology. I guess while the information might "complicate" things, I personally always err on the side of information.

The oncotype folks have been great with me. They are still fighting with my insurance company almost a year later. They said that if it doesn't work out in our favor they would work with me on a out of pocket price. Sorry for the wordiness....I thought all of this might help and give you a different persepctive. Good luck!

Taralynn

Danni, will do! Thank you!!

Kath, that was super helpful and insightful. Thank you for sharing!

cathy67

Kathabus,

I had similar experience, my insurance does not cover this, and I asked my MO this question, if there is no money issue, would you recommend it? He said, 100%, so I ordered it, I paid CAD$4100 for it, and it is worth it. Same as you, my situation is automatic chemo, and will be 8 dose dense ACT. My MO said, useless to do 4 AC, either no chemo or 8 dose dense ACT. Same as you, I also read lots of info, including NCCN guidelines, I also decided if under 11, I will skip chemo. With oncotype score 6, my MO said no chemo, but he prescribed me injection to end my period completely, and started arimidex immediately even before radiation. My radiation oncologist also said, no chemo. That is the best news I got after diagnosis, surgery pathology report brought me into deep darkness, thanks God I ordered oncotype test.

kathabus

Hi Cathy! I'm Kathy, LOL. It's nice to "meet" you. Thanks for responding. I was looking for someone in our situation a few months back. I feel like our route is a newer-ish one....not doing chemo with a positive node....and only having one node taken out. I don't seem to find a lot of folks with both of those criteria. Maybe because we were lucky enough to have oncotypes 10 and below. And I agree....if I need to pay for the test, so be it!

cathy67

Hi Kathy, I was also looking for someone with same situation at that tough time, but cannot. I even prepared everything for chemo, only hold wig order cause it is too expensive. It is so lucky we got super low score, and we made the right decision. Oncotype test will work for more node positive cases gradually, my only one is 3mm, under 2mm is another category. My tumor is 2.1 cm, under 2cm is another category. Thanks God.