Node Positive and NO chemo...any of you ladies have input?

Sereena

Yes Omaz, it is always evolving. I am not second guessing my decision to not have chemo and I have shut the door on that decision but I really wish it WAS the standard of care RIGHT NOW...more reassuring. I do think that it is just around the corner though.

edwards750

Thank you Sereena. I have learned so much from this forum; especially from you personally. I will let you know what the BS says at my post op appt and the oncologist as well. Should be next week.

otter

I can understand why Sereena is comfortable with the decision to skip chemo.  She has several factors in her favor:  a tumor that was well-differentiated (Grade 1) and strongly ER+, a low Oncotype DX score (10), and a treatment recommendation based on the judgment of a panel of experienced oncologists.

There is just one thing that bothers me, though.

We, and our oncologists, are placing a lot of trust in the results of Oncotype DX testing.  It made sense to adopt it for IDC and ILC that had not spread beyond the initial site of the tumor.  But, I am concerned that there might not be enough evidence yet -- enough long-term clinical trial data -- for Oncotype DX results to trump other, more traditional factors, in node-positive BC.  Before Oncotype DX testing came along, I'll bet not one oncologist in 10 would have recommended "no chemo" for someone in Sereena's situation.  Yet, that's what we're seeing.  Even if we trust an Oncotype score when there are micromets or just one positive node, is it safe to trust it with multiple positive nodes?

There was something odd about those cells that escaped from Sereena's breast tumor and ended up in her nodes.  Her primary tumor was lazy -- it was not very big, and seemed not at all aggressive.  Yet, some of its cells managed to break free, get into the lymphatic drainage, pass all the way to her axillary nodes, attach themselves there, and grow.  That's a multi-step process that requires some serious cellular evolution (multiple mutations and selective advantages).  That's why tumor tissue found growing in a draining lymph node is considered "regional metastasis."  So.... I wonder what the Oncotype DX score would have been on the tumor tissue in those nodes?  Would it also have been a "10", or would those "metastatic" cells have shown increased growth rate and aggressiveness, corresponding to a higher Oncotype score and greater likelihood of distant recurrence?

I am not aware of anyone using Oncotype testing on metastatic BC, either in lymph nodes or at other more distant sites.  I'm not sure it could be done, or whether it would even work.  It's already been documented that metastatic BC cells can change their expression of growth-related genes -- a breast tumor might be ER+ but its mets might have turned off ER expression.  PR and HER2 status can also change.  All those characteristics factor into the Oncotype formula because they correlate with aggressiveness and metastatic potential (as well as with the benefit of chemo).

What that could mean is, even if the primary tumor seems non-aggressive, perhaps the metastatic foci -- including the cells in axillary nodes -- are not.

Food for thought, as they say....

otter

Sereena

Otter, your post throws me back a few steps.....definitely food for thought! That had been my thought w/the oncotype and that is where all my worries lay. The test has been federally approved so there does have to be  validity and certainty to it. Will they discover in 5 years that they were wrong.....who knows but if they do just think of how much more information and knowledge that will be gained by then.  Bottom line.....cancer sucks!!!

kira1234

Otter, Your thoughts really have me thinking as well. I find it so interesting that our scores at different stages can vary so much. I had a small tumor grade 1 with no node involvemnt, and no lymph involvment, but my Oncotype score comes back at 24, yet Sereena has a score of 10 with some node involvment. Sereena you are so right cancer does suck!!!

sherryhuttRS

I was told that my tumor is aggressive eventhough it is small. So I am having chemo first; AC x4, then taxol x4, every two weeks followed by lumpectomy, then radiation. Prior to tx I had a petct that showed bc only in the left breast and nowhere else. Also had breast MRI that showed no node involvement. I am hoping that with the lumpectomy, there will be clean margins and still no node involvement. But after reading some of the posts I am getting nervous. I only want one surgery, but it seems like that might not be the case. One good thing is that my tumor is shrinking, and by my next appt my Dr. says she proabably won't be able to feel it or measure it. I am BRCA1/BRCA2 negative, and there is no family history of bc. It is interesting to see how Dr. treat each pt.

TonLee

When I had a MX, my surgeon was "pretty sure" there wouldn't be node involvement..when he took them out (I only allowed them to remove 4) and I woke up, he said they looked "normal."  But when the lab cut into them, they found cancer in all 4. 

Looking back, I don't think he should have told me there was likely no node involvement...I chose a MX to avoid radiation, and end up having to get it anyway.  I didn't even get a clean margin on the skin side with a skin sparing mastectomy.

I guess my point is this....I think it's better to go in to lumpectomy/MX anticipating node involvement.  I was pretty sure there wasn't any, so was fairly discouraged when there was.

otter

Sereena, I really hesitated before saying what I said in my post.  I thought about it a lot, and I edited and re-edited my comments before submitting them.  (Mostly I was trying to shorten the post, 'cause I am so darn long-winded.)  I was worried that my remarks would make you worried.

In putting things together, I also thought about what I might have done, if I'd been in your shoes.  I've come to the conclusion -- today, anyway -- that I would have chosen the same path you did.

No one will ever have all the answers; none of us will ever feel like we know as much as we'd like to know.  Cancer treatment will always be based on best-available knowledge, and that knowledge is likely to always be changing.... at least until "they" actually get cancer all figured out; and I'm not holding my breath for that (unfortunately).

So, given the low grade of your tumor, its strong ER positivity, the very low Oncotype score, and the fact that your nodes were only slightly involved... I think you did the right thing. 

What do any of us know as patients, though? That's why we depend on our docs to give us advice; and yours relied on the recommendation of a (large) tumor board.  Best-available knowledge.  Odds are that chemo would not have given you enough benefit (recurrence risk-wise) to outweigh the chances of serious, chemo-related, long-term side effects.  The numbers just don't add up any other way.

Will there some day be new information?  I really do hope so.  The only way anyone will ever "find a cure", or, better yet, figure out how to prevent breast cancer from developing in the first place, is through incremental progress.

BTW, I said I would have done what you did.  Actually, I chose a mastectomy, and since my margins were clean and nodes were (apparently) negative, I didn't get radiation.  In your case, the radiation you received provides you with insurance.  If there was anything else going on in that armpit, the rads should have zapped it.

Now, if you can just put up with those annoying SE's of the AI you're taking...  <sigh>

otter (who has been doing okay on Arimidex for > 2-1/2 years)

greenfrog

Otter - interesting post. I share your concerns about Oncotype - which is not used routinely here in the UK due to lack of data regarding its efficacy.

Node involvement will always equal chemo in my book, regardless of grade. That may be old fashioned but I have an attachment to the idea of chemo as a cancer blaster - eventhough I know it can often be utterly ineffective and deeply damaging to some people.

bdavis

My ONC didn't give me the Oncotype test, because he said regardless of what the result, he wanted me in chemo because of the micromet... And I am very comfortable with that decision... The chemo has not been bad at all, with few side effects and my onc said that in the unlikely event that the cancer went thru my node and travelled to another location and only left a trace amount behind, we will zap any rogue cells. If I didn't do chemo, I would always worry that even one cell escaped and would land in my lungs or scalp or brain... I wanted to know that I am doing everything I can to avoid spreading cancer. Of all of my decisions, this one I feel was a good one.

cookiegal

Otter...those are good questions. The truth is the swog1408 (I think that's right) was based on 347 people. The node neg graph is based on a much bigger sample.

cookiegal

On a happy note...the survival rate for 1-3 nodes is pretty close to no nodes. It was within the margin of error.

The thing that is hard to wrap your head around is you can have a low oncotype and have a large number of positive nodes.

So though they are quite rare, those women fall into a tricky spot.

There was one study looking at why some low oncotype women progressed to have mets. I think it looked at ki67.

So it's true that oncotype is not the whole picture. Hopefully Parp or something will help women for whom chemo is not a great option.

suzieq60

Sereena - I'd be asking for a second opinion on the pathology first ie retesting the tumour. Seems strange for a grade 1 cancer to have nodal involvement.

Sereena

suepen, I did ask how a slow growing tumor could make its way into the nodes!! The tumor was in the upper right quandrant and very close to the sentinel node. A 5cm tumor grade II, as large as that is, can have no nodes involved. My ki67 was EXTREMELY low at just 2% which could also make one wonder how it ended up in the nodes. My oncotype was also low at a 10. They just don't know!!!

Omaz

Sereena - Maybe it was just there a long time.

suzieq60

Sereena - maybe the proximity to the nodes is the reason. I agree with Greenfrog re chemo though. I'd throw everything at it.

edwards750

suepen - That is exactly what my situation is. I had a Stage 1, Grade 1 b4 my lumpectomy. My BS was pretty confident that there was no cancer in the nodes but there was in one - it was a small one but still there. My cancer is close to the nodes too. I see my BS tomorrow and an oncologist on March 10. I am sure she will recommend chemo. Of course I dont want to do it either but I will because I too am afraid one little cell might break loose and show up somewhere else. Not worth the risk to me. I am confused about the test though. It doesnt make sense to me either that you can have a low score and still have cancer in the node.

greenfrog

A lot of the women I know with nodal involvement actually have Grade 1 tumours. As my onc puts it, Grade 1s are sneaky indolent little buggers. The fact that they develop slowly and unobtrusively makes them tricky and unpredictable - that is why the concept of catching cancer "early" is so unhelpful. A grade 1 tumour may have been developing over many many years. As much as a decade some say.

Otter - your point about ER receptors is spot on. I would certainly demand to know the pathology of the tumours in my nodes to see if that revealed anything. A friend with liver mets was treated as a strongly ER+ patient with a heavy reliance on hormone therapy based on the pathology of her breast lumps. When she insisted on her liver being biopsied they discovered her liver mets were virtually triple neg.

Omaz

Very interesting discussion.  I appreciate all the information and different points of view.

kira1234

Greenfrog, that is interesting. It would be interesting to see some stats on what kind of cancer we get after the hormone threatments.

Lee7

It would also be interesting to know what kind of cancer(s) occurs after different chemo regimens and if any combinations in particular are more likely to give rise to other cancers.

Sereena

suepen, Believe me when I say that night after night after night I agonized over the decision to do or not do chemo.  In the end, I could not subject myself to 1-2% risk of serious side effects, possibly lifelong and the possible damage to my heart for a 1-2% benefit I MAY receive from chemo. The risks nullified the benefit. You may have seen an earlier post from me where I said I received the opinion from 11 oncs where they would NOT recommend chemo in my case. One of those oncs is Dr. Eric Winer who is the "ask the expert" on this very site and also the director of breast oncology at the Dana Farber in Boston. From all of them, the most effective treatment for post-menopausal grade 1 node-positive cancers is hormonal therapy. For me, it is the right decision.

momand2kids

I think you have to decide then move on-which it sounds like you have done.  I was node negative and had chemo at the Farber--- so there really is no rhyme or reason to this....the most important thing is that you are satisfied that you made the best decision for you.

BlueLily

Sereena- to clarify, you are post-menopausal? (While bdavis- you are pre-menopausal?) Is there anyone pre-menopausal & node positive without chemo? My oncology appt is Wednesday .... stage 1 (1.75cm) grade 1, 1/3 nodes ER+/PR+/HER-

Thanks!

Sereena

Yes Bluelily....I am 52 and post-menopausal. Good luck Wednesday.....let us all know how you make out.

Sereena

Thanks Momand2kids, Your diagnosis was 2 years ago and I believe the "no" chemo treatment was still evolving plus I just noticed you were a grade II tumor which I think makes a difference especially if you were pre-menopausal.

suzieq60

Sereena - I had seen that 11 oncs did not recommend chemo for you. I'm not arguing against their advice at all - it's just that node positive equals chemo in my head like Greenfrog's. Treatments change over time and I'm sure you are in the best hands. I had a grade 2 cancer sitting there in my breast all the while I was having chemo for a grade 3 one in the other breast and the chemo didn't kill it. It might have kept it under control, but I do know low grade cancers don't respond well to chemo.

Sue

aussieched

Hi everyone, my diagnosis  will be 4 years this coming May, and I was Grade 1, Stage 2, 1 node positive, had not started menopause, aged 52, and did not have Chemo.

My oncologist receommended that I could have my ovaries out instead of chemo if I wanted, as felt that was a good option.  My surgeon said that given the grade 1 and the extent it was, he thought it had probably been there for over 8 years.  I did however have regular mammograms, but nothing was ever picked up. I had 3 surgeries, 30 nodes taken out, radiation and now on 5 years of Femara.  So far, so good

ched

greenfrog

I am afraid this post may be a bit lengthy but I hope it will be of some interest regarding pathology of metastasised cancer - and why I think it is important to expose yourself to all available treatments.

 My friend (who sadly died last autumn) was diagnosed with liver mets from the beginning. Her 2 breast tumours were ILC multifocal grade 2, HER2 neg. There were 2 visibly postitve nodes but as she never had axillary clearance they don't know how many positive nodes she had in total. Her largest tumour was only 2.1 cm.

The liver mets were found by chance - her bloods were perfectly normal. She had a persistent cough and was x-rayed - on the x-ray they saw her lungs were fine but there was something suspicious on the liver. She had been placed on FEC x 6 which did absolutely nothing to the breast tumour. She was then put onto Arimidex and this had some small effect on the breast lump - but the liver continued to progress. Liver biopsy revealed that her liver tumour had very few ER receptors. She was in effect TN in her liver and 60% ER+ in her breast. And nobody knew what in her nodes.

With that situation what do you use as frontline treatment? Her specialists could never agree - one was in all in favour of perisisting with hormones believing that any ER+ status is better than none at all. The other onc wanted to keep going with various chemos. In truth none of the chemo options they tried worked effectively on her liver.

She was very keen to have all of her mets individually analysed. But unfortunately she deteriorated too fast for that to be an option. Her brain mets responded well to steroids and radiation. Bone mets were held in check by bisphosphonates but her liver sadly failed 2.5 years after dx.

Chemo doesn't always work, hormones don't always work - but I think it makes sense to give everything a try. You don't get second chances with this thing whatever grade your primary cancer is.

There appears to be a drive amongst the cancer community to make cancer treatment more personalised and less "chuck everything at it and see what sticks". But ultimately at what cost to some individuals who are potentially being undertreated?

motherofpatient

My daughter had one node and is, I think, grade 1, but is getting chemo. Two oncs she saw and the BS say that since one node was involved, it is likely that a cancer cell could have moved from the node and not yet be detectable, so chemo is a way to get any cells that might have moved to otehr lymph nodes or to the blood stream.

Also, a second very small tumor would have been overlooked if it weren't for a very assertive radiologist who keep pushing the BS to further investigate and remove a "suspicious" spot that had tested NEGATIVE, but really was cancerous. I think many "recurrences" are due to less aggressive treatment and to conservative tx.  Conserve what? The hidden cancer cells?