Chemo or not? Oncotype borderline...

TracyMN

I had a lumpectomy 10/10/12 with clear margins and SNB was clear.  My oncologist called yesterday with my Oncotype result of 18. Right on the border between low and medium.   I now have to decide whether to have chemo or not.  She said it would give me a small benefit of 2-3%.  She said her feeling is Tamoxifen w/rads is enough but if that extra percentage will make me feel I've done all I can we will go ahead with chemo. She is very supportive either way.  It would be 1 round of 4 doses every 3 weeks.  My concern is this puts rads and Tamoxifen treatment (so strongly effective for ER+) out 3 months, possibly delaying the benefit.  Also the possible permanent chemo side effects are on my mind, neuropathy, fatigue - not an easy decision.  No guarantees either way of course that it won't come back but if it does will I think I didn't do all I could?  Wish this was a clearer choice.  Has anyone on else had to make this choice or have any thoughts about a decision like this?  

voraciousreader

Has your doctor discussed ovarian suppression in lieu of chemo? Check out the NCCN website and register for the PROFESSIONAL version breast cancer treatment guidelines 2012. Also read about the clinical trials regarding endocrine therapy found on pages 93-98.





Good luck!

MENA1954

TracyM my DX is exactly like yours and my Oncologist strongly advised against chemo. She said that the SE outweigh the benefits and so she only prescribed arimidex ( I am post-menapause)!

Kj2430

Yes, I am dealing with that exact same decision right now. My oncotype score is 17. I have 1/3 positive node involvement. This is not easy and their are no guarantees either way. That is what makes it so difficult. The tumor board wasn't of much help either. It is up to me. I am seeing a naturopathic oncologist this week. Hopes it helps me make a good decision. Would love to hear from any others concerning this (especially if anyone has had positive lymph node involvement).

Thanks ladies

Kj2430

Just realized that my DX info didn't show up. Sorry

I'll try again.

chawkins

I am post-menopausal and I had a double mastectomy to avoid radiation.  Scared of side effects of that!!!!! I had a 1.2 cm invasive ductal tumor

 and no node involvement. ER+, PR- and Herc -. My onco score was 21.  Onc advised against chemo.  Said side affects were worse than benefit.  I was 62.  I am on arimidex.  Good luck.  Wish I could have had a "cancer coach" and hope I made the right decisions!

ruthbru

Don't have much advice on whether or not to do chemo, but by doing so you are not diminishing the benefits of radiation or anti-hormonals. Chemo is systematic, so it will be wiping out cancer cells that may be lingering anywhere in the body. Radiation only kills cells in the radiation field. Anti-hormonals supress the estrogen that any lingering estrogen positive cancer cells would need to grow. I did all three (no oncotype, it wasn't used much at the time). I am glad that I did, but I was Stage II and grade 3, so the choice was pretty clear to me. Best of luck!

susancats

We are in the same boat! I am waiting for my Oncotype to return..... I too fear the long-term effects... I meet with my MO next week Friday- How long does it take to get the Onco test results back?? Best wishes to you!

Lee7

Kj2430,  I had a Oncoscore of 20, and 1 sentinel node positive. I didn't do chemo, but had to have radiation because I had a lumpectomy, and am now on Arimidex. 

My understanding is the more ER+, PR +  you are, the anti-hormonals give the biggest benefit. It is a really tough decision when the docs leave it up to you to decide.  Let us know what your naturopath says.

Nancy44

I don't know that I'm much help as I just had to make the choice myself.  No nodes affected and my onco was 13; so of course I was thinking no way.  Very surprised when the oncologist suggested chemo because of the tumor size.

It was an agonizing choice; I'm well aware that it means more than hair loss and nausea; many side effects could be long lasting or life altering.   I also know how much of a benefit the Tamoxifen will be later on.

For me, I couldn't stop thinking about the what if's.  I wish I was of more help but I can tell you that once I made the absolute final decision the weight lifted.  Just wanted to let you know that I understand the feeling of having to choose; my family and friends didn't understand that sometimes there's a "gray area" and how hard of a choice it can be for each individual.

I hope you make peace with your decision.

Be well, Nancy

lago

Tracy I really hate when the medical professionals leave it up to you. Did your onc go over all the reasons why she feels that tamoxifen will be enough? How old are you? Are you close to menopause? Is this a factor?

A good onc will not want to over-treat. I would say get a 2nd opinion. If they don't agree get a third. But they should give your more details on how they based their decision so you have all the info in order to make your informed decision.

ruthbru

Another thing is that some people have a really, really tough time on anti-hormonals and end up quiting them. I had a good experience, and am totally FOR taking them for the full course, but it is just something you need to keep in mind.

mdg

I can relate.  I was 45 at diagnosis with a 4 year old son.  My dx is below.  My oncotype was 17.  I had to make the decision on chemo too as one oncologist said no chemo and the other thought there may be benefit.  I also had angiolymphatic invasion present in my pathology (meaning the cancer had an established pathway that it could have travelled by blood despite clean lymph nodes - but we don't know if it did).  Since chemo treats systemically and would help kill any cells that had travelled, I opted for chemo.  I am on tamoxifen now too.  I did cold caps to keep my hair through chemo so once it was done, I moved on with my hair.  I did chemo every 3 weeks for 4 cycles.  It was only 9 weeks.  I did very well through chemo - a few tired days, no nausea at all and I exercised for an hour 5 days a week.  It was not as bad as I thought it would be.  I can look back with no regret on my decision.  I wanted to know I had done everything possible to be here for my son.  Good luck with your decision.  It was the hardest decision I had to make in the whole process.  Hugs!

lilscarlett

Well I learned in April of this year that I proved the Oncotype test wrong. Maybe I'm a special case, I don't know. All I know is that 10-07 I had a skin sparing double mastectomy with diep reconstruction surgery at the same time. My prognosis was good. Invasive DC, Stage 1, Grade 2, tumor was less than 1 inch big. I had no node involvement but my surgeon took 7 out anyway. I had the niple removed with clear margins and my Oncotype test came back at 8% so no chemo. I was on Arimidex since surgery and was doing fine until April of this year when I had a pain in my right arm that wouldn't go away. I thought I just hit it on something and didn't realize it. When the pain moved from the side of the upper arm into the top of the shoulder i went to the Orthopedic doctor and they did a x-ray and said I had a calcium deposit, anyway to make a long story short it was Mastasized breast cancer to the bone and the doctors were just scratching their heads at this point. Everything in my favor, how did this spread? Had 5 rounds of intense radiation and 3 months later we did an mri and the cancer had not grown so we knew the radiation had killed it. Last month I was having pain in my back so I thought I pulled my back out. When the pain wouldn't go away I went to the doctor and he did a CAT scan because he thought I had a kidney stone, well guess how suprised I was when I was told I had mets to the liver now, a 1 inch lesion. How does this happen when you have a low grade cancer and no node involvement, clear margins, oncotype test at the lowest, how the hell does this happen? They  think a cancer cell broke off from my tumor before surgery and floated thru my blood stream and landed up in my bone where it has been doing it's damage to the bone. I think the liver lesion is from the bone. I don't blame anyone because I do believe in fate, the doctors did everything they were supposed to. They don't want to poison your body if they don't have to but my belief in the Oncotype test is zero.  Oh, I forgot something else that is totally bizarre. My surgeon was doing an ultrasound on my breast before she put my port in and sound a .05 cyst. She took it out when I had my surgery and said it looked like scar tissue. Well it wasn't, it was positive for cancer. So here we go with those dam microscopic cells. She had clear margins but I had a double mastectomy and was told I couldn't get cancer in my breast again because I have no breast tissue. I did think that I could get it in my skin but they said it would be in my chest wall. I proved that wrong to. I start the Red Devil Chemo this week and today was the first day I read up on it. I'm scared to death of it but I do have a positive attitude that I will beat this and go into remission. I feel blessed everyday that God allows me one more day on this earth to enjoy my family and friends. Cancer is an  cell that does whatever it wants to. just when you think everything is all good look what happens. My doctor said that 10% of Stage 1 bc cancer patients have mets and I happen to be in the 10%. I wish everyone well and recovery. I know my story is depressing but if it can help anybody make a decision about this test then that is a good thing.

lago

liscarlett this sucks. Your story is not depressing it makes me angry. I hate cancer. There is so much they don't know about how cancer can spread. I don't know who told you that you can get cancer again in your breasts after a BMX. They take out most of the breast tissue but they can't get it all. The risk of course is greatly reduced but all BMX leave a little breast tissue.

Well the odd of getting it again were low… so since you seem to go for the low odds lets home that works for permanent remission with the Adriamycin… or at least long enough till the find a damn cure.

Hang in there. Find a thread where others are doing the same chemo or have the same diagnosis as you. The stage IV ladies are extremely knowledgeable. Many have been doing this for years, even decades!♥ ♥ ♥

momof3boys

Lilscarlett- I'm so sorry that you're going thru this now. After everything you've been through. This is an awful disease. I have a couple of questions, if you don't mind. Do you think the .5 cm of cancer that was found when they put your port in is from the original cancer? If you didn't have a skin sparing BMX, would that area have been removed? If so, is it possible that your mets are from that area?

I agree that the Oncotype score is not the "end all" for determining treatment. My MO said it's only one tool they use to determine tx. My score was 16, no nodal involvement, no LVI, but since my tumor was on the larger side and I was young (43) and premenopausal, they recommended chemo.

No one ever said to me that the Oncotype test was to determine if chemo is needed. They explained that it was to determine recurrence risk over 10 years and help outline tx. Well, the Oncotype test can't tell you if residual cells are left behind in the remaining breast tissue, or if there are any errant cells in your system, right now, so I understand your frustration. One last question., did you do radiation when originally diagnosed?

5LuvBugs

Hello everyone.  I will be receiving my first "chemo cocktail" in 2 days, on Tuesday November 6,2012.   I had the onco DX test and my score was 34, higher than all of you and too high to get away with just radiation, the surgeon& medical onco were both surprised with that result because I was only stage 1 with no lymph node involvement. I always said I would "never" get chemotherapy and here I am, waiting to get it started & overwith.  I am post menopausal.

   I had an Xcela power injectable port inserted last Thursday October 25.. It is very annoying any one else have an uncomfortable port?  Will be on decadron with the chemotherapy -- not fair that I will Gain weight on chemo when others lose it.. :0(.   Will also get a neulasta shot the day after treatment.  I am scheduled for 4  chemo treatments; 30 radiation & 5 years of hormone therapy --- all for a someone who doesn't even like to take an aspirin! Anyone else in the same boat? One more thing....Good luck to everyone ..let's keep our sense of humor, it will help us through this..   Smile )

Blessings2011

chawkins - I think we ALL wish we could have had a "Cancer Coach!"

Unfortunately, when all our docs seem to have their own protocols, and all the research seems to point in different directions, and each of us reacts so differently to different treatments, it would take someone with incredible wisdom and experience to be able to anticipate and explain all the choices and benefits and drawbacks.

I just thank every woman here on BCO who has shared her experiences.

You ALL have become my Cancer Coaches!!!

Ultimately, I had to make my own decisions, but hearing from others here gave me more knowledge and confidence to ask my medical team the right questions.

lilscarlett

momof3boys, I did not have radiation either. Tumor was small and everything looked good. I do know that the Oncotype test is testing for percentage of recurrence but mine was at the lowest so I felt good about that.  The doctor does believe that the .05 tumore  is from the original cancer however we do not have the full path report back yet. I just found this out on Wednesday and it was a verbal from the pathologist. With the way my luck is going I hope it isn't a new primary but if it is the chemo should take care of it. I don't have an answer to your question regarding the skin sparing mastectomy, who knows. It could have still happened. I feel like this is the hurdle God wants me to take. I don't know why I have to but I will get through it. You know I felt  so blessed that I didn't have to have chemo becaus I was actually more scared of that than the cancer. They cut it out and it was over for me. Low grade, everything looked good. Thanks to all of you who replied to my post. I will take all of the support and advice I can get. Oh, my tumor was estrogen positive l and I went through menopause at the age of 47 and I'm 58 now. I was on hormone pills for 10 years. I was the first female in my family to get breast cancer. We have a lot or cancer in the family but not breast cancer.

JennL

Hi Tracy, I'm 38 years old, was diagnosed almost a year ago at 37.  My oncotype test was a 21.  I had lymphvascular invasion and a micromet in one lymph node (they call that negative but oncologist treat as a positive).  I had chemo, 4 rounds of AC every other week and 12 weekly taxol treatments.  I am on tamoxifen now.  I had a BMX nipple and skin sparing.  My doctors all agreed to do chemo because of my age and the oncotype test being in the gray area (I hate that gray area).  The AC was tough but not as bad as I thought it would be and the taxol was so much easier.  It is a hard decision, I think you should go with your gut.  Good luck!!! 

wildrumara

Ugh...hate the gray area.  I can only tell you that my oncologist said that if I was in the intermediate range, she would recommend chemotherapy for me because of my age.  I was 42.   My score ended up being smack-dab in the middle of intermediate at 25, so it was a no-brainer.  Something else to consider if you ultimately decide to do chemo is the type of chemotherapy that is recommended.....I don't think there is any reason you should have the hard core treatment of AC/Taxol......I think Taxotere and Cytoxan is the better choice being that you have a small tumor and no node involvement.   No reason at all to have adriamycin.  If your hospitals standard of care is AC/Taxol and they aren't willing to give you the T/C, I would get another opinion.  TC does not have the SEs that A-C-T does?  It is sometimes referred to "chemo-lite".

lago

wildrumara all chemo has it's own SE. A friend of mine was doing T/C but had to change to AC because she got bad neuropathy with Taxotere and her onc felt it would be permanent if she continued. Tracy might be a diabetic or have some other issues of concern and already has nueropathy. I know my left heel has permanent nueropathy from Taxotere

But I think she should get at least 1 second opinion anyway.

BikerLee

honestly, i would NOT do chemo with such a small benefit in terms of recurrence risk.  the side effects are not fun... and quality of life is sooooper important.  that's just me.

i did chemo, but my recurrence risk was like 40+% with the triple negative etc....  and so... i did chemo.  since i had a complete pathological response, my recurrence risk now looks like 5%....  so, that's a HUGE difference, and i'll take it.

i don't envy you having to make this decision - it's HARD!!!!

i wish you peace around whatever decision you make.

hugs.

lee

LScott63

Same diagnosis as yours however my tumor was 2cm.  No node involvement, I was 47 and my onco score was 16.  My Oncologist told me I do not recommend chemo as the long term side effects out weigh any benefits.  So she took the guess work out for me.  I had lumpectomy, internal radiation and tamoxifin and have not looked back.  I have had no SE from the tomoxifin except weight gain (5 lbs) and had night sweats but they are under control now. 

Good Luck with your decision.

TracyMN

Thank you for all sharing your experiences from the heart. I had such apprehension starting this journey and these discussion boards are an amazing resource and comfort that we are not alone in this journey. That was my first post and so helpful as I went back and forth while making this big decision.  

I decided to go with the chemo and start on 11/16 with 4 doses of T/C every 3 weeks, if I tolerate it well, followed by radiation(I have not had any yet) and Tamoxifen (I'm 49, pre-menopausal and healthy otherwise).  I did check with my doctor about ovarian suppression and it is done more in the UK and Europe.  She feels that studies are unclear at this point and does not use it unless Tamoxifen is not tolerated.  No one really knows for sure what to do with this grey/gray (there isn't even a right way  to spell it!) area.  I did get a second opinion confirming that this is the route to go if I want to be aggressive with this given my age and intermediate onco score.  I've decided that this is right for me and finally feel at peace with it. I wish the best to any having to make such a decision.  

lago

TracyMN I did 6 rounds of Taxotere/Carboplatin (with herceptin because I was HER2+). I have to say for me the first 3 rounds weren't too bad at all. 4 not great but if I could have stopped at 4 chemo would have really been a cake walk for me. I did find that keeping active really helped. Do what you can. I stopped going to the gym but continued to power walk… granted a little slower.

I too was 49 at diagnosis. I was perimenopause and my onc felt based on when my mother started menopause (51) and my sister just about finished (53) that my chemopause would be permanent. She put me on Anastrozole from the start instead of Tamoxifen and monitored my esteral levels for 5-6 months. If you have a family history like mine maybe you can discuss this with your onc. I know the Anastrozole is working because I do have some stiffness and occasional warm flash. I really didn't want to go on Tamoxifen because my mom had issues with blood clots. That can be a SE of Tamoxifen. I think that might have swayed my onc to consider going straight to Anastrozole in my case.

I really hope you get through this like I did. BTW I actually had no nausea and very little taste changes. Yes it can happen.

mdg

I am glad you came to a decision.  I know how agonizing it is.  I felt a bit of relief once I decided to do chemo just because I didn't have to think about what to do anymore.  I also did TCx4.  It was not that bad for me.  I had no nausea at all like Lago....I never used any pills for nausea so I threw them all out - unused!  I was able to exercise 5 days a week through chemo. I was tired at times and such, but it was not as bad as I imagined.  I hope you have minimal side effects as we did.  Good luck!

wildrumara

Whew! I'm sure you are relieved to finally have that decision behind you!  The worst part for me was the metallic taste in my mouth that lasted about one week after each treatment.  I could barely eat and drink because of it, and I paid a price for that......so my one piece of advice would be hydrate, hydrate, hydrate, even if you don't want to.  You will find loads of information on the chemo boards.  Best of luck to you!

ruthbru

I am glad you are doing the chemo. Chemo was not fun for me; but I was able to do everything I had to do, and most of the things I wanted to do during it. It helped me to think of the chemo drugs as Navy Seals working FOR me, killing any lurking terrorist cancer cells. Best of luck!

Rose12

I was not planning to have chemo as my tumor was 0.3. It showed on my mamogram. I heard when they are that small they do not even show up. But when my Onotype score came back at 61% I had no choice. My Doctor said when do you want to start chemo? So I was a bit surprised. I look at it as another prevention to help me. I was not happy with the chemo T/C X 4 I got very sick with thrush. But I did it. My hair is slowly growing back I still have to wear my wig. Finished chemo in July. Did 33 rads, and on Femera for 5 years.

5LuvBugs

Thanks for your posts girls..It makes me feel that I made the right decision to get the chemo also...

Chemo sucks but so does cancer so I'm thinking of those "Navy Seals" covering my back!!  Still feeling crappy after my 1st treatment 11/6 Tuesday.  My mouth is white, I have a rash under my arm, sores on my butt from going and going like the energizer bunny and no energy!!  Tomorrow is day 7 when my count really drops... Keeping my grandkids away from me - don't want those little school germs in my house.  OK, everyone, chin up - we can/will do this together