I can't believe it's back.

KBeee

Emily, my ki67 was high second time around do I requested Oncotype. First time around, it was 16. The second time around, it was 40. That changed everything!!!!

barbe1958

Kbee wasn't your second cancer a new primary with different hormone stats?

Meow13

KBee, do you think the pr- is a factor in why your score was 40? I saw the set of mathematical equations they use and being pr- definitely weighs heavily toward a higher score. But then again some people that are pr- have intermediate outcomes.

I really hated getting only a number. I want to actually see the classification process. I am also concerned about the sample size. It just wasn't compelling enough for me to do a chemo regiment. I guess if you respond well and have no permanent adverse effects it could be worth it. The problem is you just do not know. I also was counting on research over a period of 5 to 10 years to come up with much better treatment. I haven't seen that happen since my tx.

In your case, I can see why you would go with odds. You had chemo for your 1st occurance and it came back in 2 years, hopefully this time you will be rid of it. Have you thought about AI drugs?

KBeee

Barbe, No. The first recurrent tumor was in the exact spot as my original tumor, and the second was near where they did the original core biopsy; likely dragged a couple cancer cells as they pulled the needle out. The PR did change. Their theory is that the PR+ cancer cells may have responded better to Tamoxifen but some stubborn PR- ones did not, and grew into new tumors. Recurrences can have different pathologies from the original tumor.

Meow13, The PR- may be one factor in why it was high, but I have seen PR- people with low or intermediate scores. Your tumor and treatment stats are not there so I cannot comment specifically about your case. I am currently on an AI; I have been since I finished chemo. Chemo is designed to prevent distant metastasis, it does not work as well locally. Surgery and radiation are for that. I am one of those people who has a pretty easy time with chemo. It is an individual decision. I hope your tests on your spine turn out well, and that you get good news.

I simply mentioned it to Emily, because her treatment plan is identical to mine, but before I began, I requested the Oncotype to make sure chemo was not warranted, and it's a good thing I did. It was added to my plan. Her Ki67 was high, like mine. That's why I passed it along. It's simply another piece of information. A very well known major medical center felt there was no need for it for me, and no need for chemo; they very much minimized it. Luckily, my local MO agreed to do it. The big major medical center changed their mind quickly when they saw the results. Emily's case is different in that she is 8 years out, and is also BRCA positive. Every case is unique, but it's something she can ask about if she chooses. Any information that can be gathered to aid in treatment decisions is helpful

Emily2008

Karen, I'm glad you brought this up because I asked my MO about Oncotype on this new tumor and he said they don't do the test on recurrences. I thought I remembered reading that you had it done on yours, so now I'm confused. If they considered yours to be a new primary, maybe that's why they did Oncotype, whereas they're classifying mine as recurrence, hence no Oncotype???

The other possibility is that my MO *knows* that he will suggest chemo, so he doesn't think Oncotype will be necessary since he'll recommend chemo again anyway. When I said, "So chemo won't be necessary?" (in response to him saying reexcision with rads, assuming no node involvement), he said, "I can't promise that" (meaning he can't promise no chemo). This MO is careful to not give too much information at each appointment. I think he's cautious to not overwhelm his patients so he sort of leaks information out over a series of appointments. In some ways it's frustrating b/c I would prefer everything up front, but in some ways I can understand his reasoning. So now I'm wondering if he plans to recommend chemo anyway, and thus says they won't do Oncotype again on this tumor.

What do you all think?

Meow13

I like to be the one making the decisions. I think of my MO as the expert advisor, I really like to know what they are basing their recommendations on. My mo isn't used of dealing with patients like me, he only tells me what to do with very little explanation. I have found this website to be so helpful in talking with others.

Kbeee, I believe in AI treatment. I think it helped keep my cancer away even though I'm pr-, I was 95% er +. The side effects and potential damage is still a concern for me.

KBeee

Mine was definitely classified as a recurrence; a local and regional recurrence. (It is not uncommon to have change of pathology with recurrent tumors. It happens about a third of the time. Cancer cells are constantly changing and mutating.) Mayo would not do the oncotype. They felt that this was an isolated recurrence, that my local surgeon just missed some (this is before they found the second tumor). The MO I saw definitely downplayed the seriousness of it, in my opinion. He would not entertain the idea of chemo at all, and would not order the oncotype. My gut was that this was more aggressive, so it was concerning to me. I rarely get strong gut feeling on things, but when I do, it has never been wrong. Ever. My local MO said that they do not typically do it on recurrences, and he did not know if insurance would approve (they did). He said that there's little data and studies on recurrences, and not much to go by. (I did find one really small study on local recurrences after mastectomy, which showed people who did chemo did much better. It was a really small study though, and it has not been repeated in a larger study, so the data may be flawed). He felt that the oncotype would be a data piece, but not the end all, be all to make the decision, since it is based on primary cancers, rather than recurrences. It does nevertheless, give valuable information. Once they found the second tumor during surgery, he was definitely in favor of chemo, and we were on the same page (we have been on the same page about everything; we very much think alike). The oncotype just reaffirmed it for us. My recurrence happened 14 months after finishing chemo though, which is much different than 8 years, as far as aggressiveness of what was there. I am not BRCA positive, but I have a very gloomy family history. Every case is so different. Whether it's 14 months or 8 years, it still sucks, and hard decisions have to be made. If you can get multiple opinions, or be in on the conversation your MO has with Dana Farber, that would help you decide. I'd not just want to know what their recommendation is, but why specifically they feel that's the best choice for you. That choice may or may not include chemo. It's so individuial.......and so hard to decide.

TwoHobbies

Emily, I am just seeing your post. I have been in your same boat but not BRCA positive. I am pretty sure Tamoxifen just didnt work for me. I did excision, sentinel node biopsy which was a node in the neck(negative), chemo, rads, and then lupron and anastrazole since I was premenopausal and tamoxifen failed. All scans negative. It sucks for sure and I sympathize, but life is good again. Hang in there.

Emily2008

@TwoHobbies, I hadn't considered that Tamoxifen may not have worked for me, considering how highly ER/PR positive my first tumor was. But then again, the BRCA status seems to throw a monkey wrench into every analysis, so all bets are off in terms of trying to figure out what caused this recurrence.

So your SND the second time was in the neck? That was negative, but they still recommended chemo? Why? Did they do an Oncotype score on your recurrence?

TwoHobbies

They did not do an oncotype on the recurrence. They recommended chemo based on a study that had come out showing chemo helped recurrers. Although it was not very conclusive for ER positive patients;Triple negative patients showed good results. At the time, the ER group had seen few recurrence to judge how much chemo helped. I also recurred within two years so thats not as favorable as your time frame, so I think they felt maybe I had never been under control on tamoxifen.

Yes my SNB was near the collarbone.

Meow13

It really is hard, but when you get a strong gut instinct about treatment i would go with it. Maybe there is something to mind power.

KBeee

I agree with Meow 100% about gut instinct.

stephaniegee

Hi guys,

So Sorry to hear about your recurrences. I am just wondering, how did you find the recurrence? Was there a noticeable lump?

I am 2 years out since treatment and I had a double mastectomy but now I feel a small, faint lump in between my armpit and my implant. I am pretty sure it must be scar tissue...but how do you know?

When my arm is down I can't really find it, but when I lift my arm it is there. I am seeing my surgeon next week I just trying to figure out if I should be nervous or not...

Jiffrig

Kbeee, did you have radiation after your first dx? I was trying to avoid rads but RO said that is what will minimize reoccurance in same location. Also in surgery they are cutting out that small section of skin where tumor was. This is more common than people think

TwoHobbies

Steph, yes it could be scar tissue. I have one lymph node I feel that turned out to be nothing and one lump that was cancerous so best to check it out. They will probably ultrasound it to see what it looks like. I hope you get good news.