Chemo or not? Help!

rdrake0

I need advise.  I had a lumpectomy on December 8, 2008, with reincision on January 2, 2009, for clean margins.  Yesterday my oncologist called me to tell me I didn't need chemo.  I had to ask him what my oncotype dx number was.  He looked it up and said it was 25.  I am 59.  Everyone else at this site has been told by their doctor that they need chemo for the same as my cancer.  I don't really want to loose my hair, but I'd rather that than have cancer come back.  I live in central Illinois.  Do I need another oncologist?  Help!

Ruth

shaw77

absolutely get a second opinion from another oncologist!!

hopefullady

Ruth,  the oncotype test is not the only thing the doctors use to determine whether or not to advise chemo.  But, I agree that you should get a second opinion.  Your situation is very similar to mine, except that my score was 20 and my age is 51.  I just finished chemo. 

 I think a second opinion will help to ease your mind.

Chris 

rdrake0

Could someone explain what the nuclear grade and histologic grade are?  I want to ask my oncologist on Monday.

Thanks.

Ruth

otter

Ruth, I responded to your post on a thread on this forum that was started by Lisa1965 because of her Oncotype score of 24.

Tumor "grade" is explained on this page of the Breastcancer.org website: http://www.breastcancer.org/symptoms/diagnosis/rate_grade.jsp

Be sure to ask your oncologist for a copy of your pathology report, and ask him/her to explain everything to you.  Take someone along who can help you listen and ask questions.

otter 

dlb823

Ruth ~ If your onc is one of those still giving a chemo regimen that has been the standard for bc for many years and is still used by many oncs, he may be thinking the risk of that particular one is not worth the benefit to you.  That one is AC or AC+T -- and its the A part, Adriamycin, that's a concern because it poses a significant risk of heart damage.  But there is a newer regimen that many of us have had in recent months that does not have the same risk.  It's called TC (Taxotere + Cytoxin).  It's not right for every bc; whether it's right for you will depend on your hormone status.  I don't know why your onc feels you don't need chemo, but this could be one explanation.  I had an onc tell me if I was his wife, he would encourage me not to do chemo, and I had 1 positive node.  When I sorted everything out, I figured out the problem was he favored AC, and I'm pretty sure that's what he thought I would be better off without -- and he may have been right.  Anyway, just a possible explanation.  But, in your situation, I would be inclined to get a second opinion.   Deanna

Anonymous

Ruth, my oncotype score was 23.  I am 44.  My tumor was over 1cm (1.6cm).  I have read that tumors under 1 cm, and IF you are post menopause (which you may not be)  and node negative they don't always recommend chemo.  That said, my onc. said I should do chemo - she uses CMF on node neg. women with my type of tumor- the cooper protocol which is daily oral cytoxan, weekly infusion of the M and F for 6 months.  I would for sure have a meeting, possibly get a 2nd opinion (which can be difficult I know).  Good luck with this.

Mouser

Ruth --

the short comment is: Please (!), for your own sake, get another opinion - it's cheaper than worrying! 

Here's a much ,onger answer, based on my history. Incidentally -- i have a local onc, went to a teaching hosptial for my 2nd opinion before lumpectomy and rads, and then to a really major research center a yr later.

I was pretty much in your situation in 2007 (<1 cm, 0/1 nodes, Er+, Pr-, Her2-, stage 2 or 3 depending on the pathologist), but i had a 2nd focus, 1 cm DCIS in the same quadrant, but not very far away. The teaching hospital recommended a mastectomy because of the 2 foci, but chemo was never even suggested.  In summer 2008 my local clinic shifted to digital mammograms, and it turned out that therewere more areas of atypical hyperplasia in the breast -- pre-existing, all the oncologists agree.  My local onc thought we should just biopsy, but i opted for a mastectomy - the hyperplasia was too widespread to leave me with any breast to speak of. As hoped, there was no cancer in those sites; just hyperplasia -- so i literally had a mastectomy to be sure i did not need one.... But even tho the 2nd opinion was emphatically for a mastectomy, no one suggested chemo at any time.

I did not have oncotype testing - didn't feel the need, and it was new enough in 07 that neither my local onc nor the teaching hospital onc suggested it. The mastectomy was at a really major medical center - and they did not recommend oncotype testing -  *or* chemo - either.

The rationale for chemo-or-not is: what's the risk the cancer has gotten out of the breast? Rads will way decrease the odds of a local (in the same breast) recurrence, but rads do nothing to kill off any cancer cells that have already moved thru the bloodstream -- rare in stage 1, but it can happen. (That's why there's no cure for invasive breast cancer.) Chemo prevents most of those *distant* recurrences.

On the other hand, chemo has some pretty nasty side effects (not *only* while you're having it; in the long run also). It is not good for your body in general. So it is a balancing act: yes, chemo will decrease the odds of a later metastasis, but it will also damage normal cells. Ask your onc - and the 2nd opinion onc - what the odds of recurrence are with various treatments. Then decide.

Let me run thru my calculations to show you what i mean. With a lumpectomy but without rads, there is, at *best*, about 1 chance in 3 of some kind of recurrence, mostly local. Too high; i opted for rads.  For me, the odds of a recurrence (somewhere, sometime; anywhere, any time; studies go out for 30 yrs; the risk never goes away entirely) was around 15% without anti-estrogen treatment after the rads, going down to 8-9% if i stay on tamoxifen or an aromatase inhibitor for 5 yrs. Chemo might have cut that another 1-2% -- i forget the exact numbers, because it wasn't worth it to me. Nor to either of my oncs -- local or major med center. I decided (and this is me, personally) that tamoxifen was out -- i find the risk of stroke too high (i'm 65, it increases with age). On the other hand, aromatase inhibitors like femara are worth the risk, as long as i don't get too many side effects (so far, so good, 1 yr out). But if my bone density goes into the iffy zone, i'll stop femara ... again, a personal risk decision,  tho my onc says he's OK with that (maybe because otherwise i might not have tried femara? Or, as he says, because my odds of dying of something else are high enough to take that chance.) Some people opt for adding drugs to increase bone density.

Sorry to be so long-winded, but let me say one more thing: i never bothered with a cancer support website until i had the mastectomy -- but then i really needed i So i'm guessing that people with more serious worries/risks/treatments show up here; people with less anguish may not bother -- and that may be why so many more people here have had chemo than not ....

 Get the 2nd opinion, and all the best!

mouser 

rdrake0

mouser,

You answered my questions so well!  Are you a oncologist or something?  Must be close.

Thank you for the statistics.  I wish my oncologist has sat down with me and told me these things last Friday.  I think someone did early on (before surgery) and I got really confused with all the info on an empty brain!

What are your thoughts on a PET scan at this point to detect distant metastasis if it has occurred already?

Thanks.

Ruth

Mamie2

bump

knowledgeforpower

I am 58. I had a lumpectomy and SNB on February 2.  The tumor was 8 mm and the surgeon got great margins.  My SNB was negative. My tumor was grade three and was very aggressive. On February 24 my Oncotype came back 26 and the oncologist recommended chemo.  My recurrence rate would have been 17%. Chemo will move it down to 12% and the oncologists here like to do chemo if it has a 5% or more chance of reducing recurrence.  I had my first of 4 infusions of adriomycin/cytoxan yesterday.   After chemo I will do 18 days of radiation, followed-up by 5 years of an AI.   If it will give you peace of mind, then by all means get a second opinion.  Good luck.

rdrake0

Thanks for all the input, everyone!  Here is an update for you: 

I got another opinion, and he said no chemo, too.  So I asked for and got a whole body PET/CT scan.  It showed two lesions 'consistent with tiny liver metastases' (a quote from the pathology report after the PET/CT)!  Crap!  So, now I'm having an MRI this next Tuesday to check it out because the doc said those two lesions could just be liver hemangiomas (noncancerous mass in the liver).  But they showed up on the PET scan, so they must be 'hot spots' or growing.  Here we go again.  The waiting game.

Has anyone ever heard of the CyberKnife?  It's painless, bloodless surgery.  Afterwards you get up and walk out feeling a little tired later, maybe.  Do they use it for breast cancer?  I heard about it researching liver cancer.

samiam40

I don't know anything about this, but I certainly am praying for you that the liver spots end up being nothing serious.  My father had lung cancer and he also had a spot on his scans that everyone at first thought was a metasteses to the liver, but was later determined NOT to be another cancer.

Good luck and please keep us updated as to your status.