CHEMO OR NOT?

linda53

This is my first entry but have been reading for a while and find a lot of great information. In addition to the profile listed below the pathology report found vascular invasion and close margins so I was referred to a medical oncologist who said the chemo decision was entirely my own. She recommended Taxol only weekly for 3 months (in addition to the 33 radiation treatments and Tamoxifen I already planned to have). I am truly torn about the chemo. She said it will give me a 4-5% better chance (she said the rads and tamoxifen will get me 90%) of no recurrence for the next 10 years. Doesn't seem like a huge % to me but I'm not really clear about how the chemo will affect me. I'm hoping you all can help guide me.

Thanks,

Linda

klp

Linda

Have you considered the Oncotype DX test to determine your risk of reoccurence with or without chemo? I don't know if your insurance will pay for it though. I know in my case Medicare will pay. This is a very expensive test too.  I'm waiting for my test results to see if I'll need chemo or not.

I really want to avoid chemo if at all possible, just like you. My DX is very similar to yours.

linda53

She did not mention this test but from reading here it seems as if many women are using it. I went to their website and my insurance was listed as one that pays for it so I will look into that tomorrow. One thing I still need to make sure I heard correctly is that even though I have negative nodes, she was saying that some cancer still could have gotten through and that the recurrence rate she cited was for metastatic disease for which there is treatment but no cure.Makes that 4-5% a bigger number in my mind!

Thanks for your feedback,

Linda

Emily2008

Hi Linda,

The oncotype test is a good tool in your information gathering re:chemo.  In my case, though my score was 14, on the low end of recurrence, I was also 35 at diagnosis.  After consulting with 2 oncos, we decided on 4 round of AC chemo, which I just finished up on Thurs.  So, there are other factors to consider beyond just the oncotype score.

Cancer usually spreads through the lymph nodes, but it can also be vascular and spread through the blood.  When I was looking at my recurrence rate I was told that by doing chemo, as well as Tamoxifen, I would be reducing my chance of recurrence from 10% in 10 years to about 5% in 10 years.  A 5% difference may not seem like a lot to some people, but I have my 3 little boys and husband to consider, so I wanted to do all I could do at this stage when it is most easily treatable.  Not an easy decision, so I understand the concerns you share.  Get all your info, talk to others, pray, and go with what feels right to you.

mzmiller99

Linda53 - our numbers are similar, and depending on your OncotypeDX score, I think what you nee to consider is how YOU will feel about the decision you make.  If no one is pushing hard for chemo and you don't do it, are you going to spend the rest of your life wondering if you should have done it? 

Or, will you be satified that you saved yourself from the rigors of chemo and all of the SEs that go with it, if ti wasn't going to improve your odds.  For some people, even a 2%  chance needs to be explored..

I agonized, too - my docs said I didn't need it, but I couldn't feel confident about the decision until the Onco score came back and I could see for myself that my chances wouldn't be much different with chemo.

I was thrilled to have that info to help me decide.  So, I would really advocate for the test.  It won't take that long to come back.  The people are wonderful and very helpful, and it was well worth the short wait for the results to come back.

Good luck and let us know how you make out.

Susan

swm63

linda,  i felt the same way you do.  had the oncotype test done, score 22, even though i was in grey area, still didn't want to do chemo.  then i  read about a chemo called cmf.  have you researched this type of chemo yet?  it isn't supposed to be as toxic, it just takes longer for treatment. i started this treatment process on friday and so far so good.......there is  a great thread on the website about cmf with wonderful ladies with all kinds of great advice.   you should check it out!

scarp

Swm63- Sorry it took so long to get back to you but we were in Disney for the week.  I felt great!

Even had a few drinks.  The onc said it was ok to drink in moderation a few day after treatment.  I felt kinda tired, dizzy and loss of appetite the day after treatment.  A little nap took care of it all.  The nausea hit me when I went to bed but it wasn't bad.  Felt like a nervous stomach.  I was constipated but Senakot worked well and have been ok since.  Maybe it was all the junk I ate in Disney.  Didn't feel too guilty cuz my oral surgery made me lose 10 lbs and my short were falling off me.

Are you going to start CMF?

1 down and 7 to go.  I'm hoping to push the treatments a few days if my blood counts are good.

linda53

SWm63- Thanks for the info. I went to my hematologist today (who is also an oncologist) and he said that he would ask his staff to check into the OncotypeDX test for me and figure out if my insurance covers it. I think that it is worth the wait to get a more definitive answer. My medical oncologist is from a large practice and (I think) very well regarded and she did not mention this test. Don't know why.

Linda

klp

I received the results of my Oncotype Dx today and I'm so relieved that I don't need chemo. My score was a 5...I believe it takes a little over a week to get results back. I go tomorrow for an appt. with the radiation team...consultation. Have an appt. next week with an oncologist and the following week with a Physical Therapist which I think is precautionary. So far I have no signs of lymphedema. Everything seems to be moving right along..

Anonymous

Kathy  - congratulations on your VERY LOW score of 5!!  That certainly makes your decision easy!!

Doreen  

klp

Thanks Doreen!!! It sure does but I had already made up my mind not to go thru chemo at my age. The low score just cinched it for sure. Going this afternoon for radiation consultation.

AllieM22

My score came back as 18--not as low as I was hoping. My oncologist had recommended not to have chemo as my tumor was strongly ER/PR +, HER2 negative, and the grade was 1, so felt the chemo would not be very effective as it works better on faster growing (cancer) cells. But I am 42 yrs old which I know can factor in.  Anyone have similar numbers?

paras

dear allie,

i had an onco score of 21 higher than yours was told i had a 13% of recurrance if i do nothing after bilateral mastectomy. Your grade of cancer is good. but you did not mention what the size of tumor was. even though you say it is a stage one cancer, if it is a large borderline  on stage 2 maybe that is why he recommends chemo. in the end its your deision. i am going to have the chemo on monday i have the same no node stage one but the tumor is1.9 cm which is almost a stage 2. the grade is 2/3 nottingham and 2/3 nuclear. so my grade is larger than yours and if i do chemo it will cut the 13% to 6% chance of recurrance. i have done the math and i think i will try to do everthing to save my life. you are younger than i am if yu have not had children i would also consider harvesting eggs or your partners sperm if you want a child. i am 52 and had my familly but still young enough to think about living 30 or more years.haha. i wish you luck its a hard decision.

Anonymous

Allie - my score was a 19 - my grade was either a 2 or 3 - depending on which pathology - pathology from the biopsy was grade 3, pathology from my lumpectomy was grade 2 -  my onc said lumpectomy biopsy was probably more accurate since there was more tissue to examine.  I was 44 when I was diagnosed a little over 3 1/2 years ago.  My decision was to have a hysterectomy w/ ovaries removed, declined chemo (with my onc's blessing) and had rads - taking arimidex and doing well ...   it was a really really hard decision to make ...   

Doreen 

AllieM22

Thanks DoreenF--glad to hear you are doing well! It is a tough decision. I don't want to feel that I didn't do enough at the beginning...the one thing that keeps me from feeling that not doing chemo is "ok" is that the growth rate is low (grade 1) and that chemo helps most with faster-growing tumors. I did talk to my oncologist about having the monthly injection that suppresses the ovaries (I guess similar to having a hysterectomy?) but while she had at first mentioned it, said that ultimately she isn't recommending it. She said I could talk to another oncologist if I wanted to--did you get a second opinion? I have read a lot online (studies etc) but of course I'm not a dr...!  

Oh and also--the oncologist thinks the recurrence rate (12%) would likely be much lower for me since I am HER2 negative...another factor in the no chemo discussion... 

lmrunner

I just created a new topic, but then found this thread.  It is so helpful to read so many cases similar to mine.  I was diagnosed with IDC on 9/12/08, had a mastectomy on 10/29/08 (due to multicentric/multifocal sites), had no lymph node involvement, but had 2 tumors (2.3 cm & 2 cm), so the oncologist is recommending chemo (TC - taxotere & Cytoxan).  I am waiting for the results of the Oncotype Dx test, which should be in by Thanksgiving.  I have another appt with the Oncologist on 11/25.  He has already told me that regardless of the Onco test results, he will recommend chemotherapy, but will feel more comfortable with my decision not to have it if the score comes back low.  How reliable is the oncotype dx test?  I feel like I'm basing everything on this test, and if the oncologist community is hesitant, is it reliable?  I have an invasive cancer, greater than 1 cm, and am still considered borderline pre-menopausal.  I'm just not sure what decision to make - chemo or not....

AllieM22

Imrunner-- I would imagine that your onc is recommending chemo b/c of the size of both tumors, although they are grade 1 so somewhat what I have. My second one was smaller (4mm) and was found while the surgeon was doing the lumpectomy on the 1.5 cm one. I wonder if they would have recommended mastectomy if they found it earlier...My oncologist said that the presence of another tumor didn't dictate a change in her recommendation--that they generally plan treatment on the largest tumor. I have heard that the Oncotype test is pretty reliable although have to take into acct that they use large #s of people. Also mine told me that the recurrence rate doesn't take into acct the HER2 negative status--so that mine would like be lower than the test predicted b/c I am HER2 negative...BUT I would heavily consider what your onc is recommending. You may want to consult with another dr to get another opinion.

Doeface

Hi Allie and everyone,

I too just got my Oncotype score of 18... with hormone blockers only my chance of distant site recurrence is 11%.  If I were to do the most aggressive chemo, I might squeeze out an additional 2-3% max.  I am choosing not to do chemo... the short term side effects do not concern me as much as the long term.... to suppress my immune system doesn't seem worth the possible 2%.  I have to admit, I was much stronger in my decision yesterday... now, I do have fears that years down the road, should I have metestatic cancer, I would regret my decision... However, I remind myself that those who choose chemo STILL get metestatic cancer and that doing chemo does not guarantee that it will not return... I just can't imagine doing chemo to myself without a very compelling reason... I am seeing my surgeon tomorrow and will review all the details with him.  One thing I know is that when I act according to my gut instinct, I never regret the outcome... Lots of Love to you all ! 

scarp

Doe- My onctotype was a15 and I have to say making the decison was the toughest part of this whole thing.  I looked for any excuse to not have it.  2 onc and my surgeon told me it were more or less telling me to do it but if I didn't it was fine too.  I thought back to a day when I was at my interist last year prior to dx and she found a slight heart murmor and told me to get an ecco.  Well one thing led to the next and never did.  As I went for my pre-admission testing for the lumpectomy, my ekg was off.  This was the last thing I needed to hear 6 days before my scheduled surgery.  Great...heart and breast issues.  I kicked myself so hard for not going for that damn ecco.  The stress was unbearable.  Xanax was my best friend at night.  When finalizing my decision on chemo, this came into play   I could never second my decision.  I began CMF on 10/28 and have been thry 2 of 8 rounds and am doing great other than some fatigue.

Good luck with your decision, I know how tough it is.

scarp

Doe - Forgot to mention,got in for the ecoo pretty fast to find out that the ekg was perfectly normal and I do not have any heart issues.  Makes you happy prior to surgery!!

linda53

Hi everyone,

I too was really torn about chemo. My oncologist said that chemo was entirely up to me and that it would give me a 4-5% better chance of no recurrence over 10 years. My oncologist did not even mention the Oncotype DX test but my hematologist did. So, when I went for my second appt. with the oncologist I asked her about Oncotype and she doesn't really rely on it too much. She said that I have an aggressive cancer and that if the test came back low she would question the reliability of the test. She said she knew it would be high. I found out that the primary Dr. has to approve the test for insurance so I didn't even ask her. Even though I have a small tumor and neg.  nodes, I had lymphovascular involvement so it was on its way to the nodes. Even with a small tumor it can be aggressive but some women with a lower grade than I have larger tumors and lymph node involvement. A mystery to me. Anyway, I'm staring chemo on 12/1.

Doeface- let us know what you decide. You are exactly right - there is no guarantee either way and it is a tough decision. Hopefully those around you will support you in whatever you decide.

Linda

Doeface

Hi Everyone,

I met with my surgeon today about my Oncotype score... the short answer is I am opting to not do chemo and am very strong in my decision.. for me, it is the right choice.  My surgeon supports me in the decision and reminded me of the obvious which I overlooked.... that the world wide medical community does not know if my score or any intermediate score would receive benefit for chemo... this is why they are having an ongoing worldwide clinic study of intermediate scored patients randomized into two groups:  those with hormone blockers only and those with blockers plus chemo.  He pointed out that if they knew for sure, they would not be randomly assigning patients in one group or the other.  He also said that if he thought my choice was out of line, he would intervene and encourage me to do chemo.  Again, it comes back to my own gut instincts and I am grateful to have a strong support system around me.

 Love to you all! 

encoremom

Doe,

I am in a similar situation with the question about chemo and started a new thread before I found this one.  My onco score is 24 - smack in the middle of the intermediate. Two tumors, largest less than 1 cm, ER+, PR-, HER2-, bilateral masectomy - Stage 1a.  My oncologist has sort of the same thinking as yours.  He also ran it by two other very experienced breast specialists and the consensus recommendation was for me not to do chemo.  They also reminded me that chemo does not cut out the chance completely and for me it reduced it about 3 - 4 %.  He also told me, which was the first I'd heard, that the chemo has a 1 - 2 % chance of causing secondary cancers.  So they said the equation did not justify giving me strong chemicals since my largest tumor was less than 1 cm even though my score was intermediate.  Of course, he said it was ultimately my choice. I said all along that I would trust my doctors on this one and I am.  There are no guarantees either way.  I also have a strong faith in God and I'm praying too that he is watching over this.

Love to all

Christianne

I opted to not do chemo also.  I had an Oncotype score of 20.  My oncologist told me that the risks outweighed the benefits.  I prefer more natural things like housecleaners, laundry soaps, etc., so chemo did not sit well with me in the first place. 

braceletgirl1014

Hi Christianne,

I was so scared of chemo, I decided not to do it, even though my Onco. suggested to do it. Risks and benefits were about the same, borderline, microinvasive DCIS, ER/PR negative, grade 3, stage I, 0 nodes, HER2+, small tumors but extensive area of DCIS. I am OK. Happy and living my life the way it was before my DX, but of course I will never forget what I've been though.

Wish you the best!!

Doeface

Thank you Bracelet, Christianne, Encore Mom, Linda, Scarp and everyone else for your input... I have been feeling really alone out there and am grateful for all your  shares... I went for my assimilation session with radiation onco yesterday... beginning to feel like I did before cancer dx... strange indeed like I can't recall where in life I left off before all this !!   Have a wonderful Thanksgiving everyone !  xox Doe 

kamico3

I am also struggling with the decision to have chemo or not. My tumor was 1.0 centimeters, and it was hormone receptor positve and HER2 negative. Also node negative.  Grade was reported as 3 after the biopsy but a 2 after the lumpectomy. I am 56 but I have a son who is in his mid-teens. I am very worried about a distant recurrence but am also very worried about the possible short- and long-term side effects of chemo. My Oncotype score is 19. My oncologist says the decision about whether to do chemo or not is up to me, although  my sense is that he thinks it makes sense for me NOT to do chemo, but instead to take an aromatase inhibitor. I am supposed to start radiation soon but I am still very insecure about this decision. I spoke to a friend of mine who is a physician and who I trust very much, and got the sense that he would definitely do the chemo if it were him. He pointed out that , if I have a 12% chance of a distant recurrence, that if I can get it down to, say, 10% by doing chemo, that is not much difference in absolute terms, but in relative terms it reduces my chance of recurrence by about 17%. I know that there is no one "right" answer to this dilemma but the decision is a very difficult one and I'm not sure how to make it. I'm afraid that if I don't do it, and I do get a recurrence, I will always second-guess myself, but if I do do it, I will always be worried about possible long-term damage. I really don't know what to do or how to make this decision. I do think that if my Oncotype score had been lower, say below 15 or so, the decision not to do chemo would have been much easier.

swm63

I assume that  you have heard of the chemo treatment CMF?  It is much easier on your body, but might take longer than other treatments.  I had very similar dx and an Oncotype score of 22.  I didn't want to do chemo either, but when I found about CMF, it changed my mind.  There are so many great women on this thread that have either been through CMF or are currently undergoing treatment(like me!!)  You should research this type of tx and ask your onc. about it.  Love to help in anyway I can........

Anonymous

Hi Kamico - your situation is so similar to mine ...   my tumor was 9 mm (1 mm smaller than yours), node negative,  ER/PR++++ her2-neu negative -   grade from the biopsy was a 3, grade from the lumpectomy was a 2 - oncotype DX score of 19.   This was 3.5 years ago (I was 44 at the time) ...  when the oncotype test was very new.  I had several discussions with my team of doctors about this -  ultimately I decided to have a hysterectomy, did full rads,  declined chemo, and am taking arimidex.  I'm doing really well - and my doctors all tell me my prognosis is great.  If I had chose to do chemo my oncologist had recommended CMF. 

It is a really hard decision to make ...   I had the same concerns that you have about long term side effects  - and did a lot of thinking - I made the best decision for me with the information that was available to me at the time.   

There's a trial called the TailorX trial that is studying the mid range scores to understand the scores and when chemo is overtreatment vs  undertreatment (if not used with a particular score).  Perhaps you want to consider enrolling in this trial ?   Something you can discuss with your oncologist ...  

I hope you'll be able to come to a decision where you won't second guess yourself  down the road.  

Hugs,

Doreen  

kamico3

Thanks, everybody who  has replied to me! After much agonizing, I have decided that the only other thing I can do is get a second opinion at Dana Farber. Hope to get that organized ASAP. I don't think anyone  will be able to tell me anything I don't already know, but at least I will feel that I have one more medical opinion and then I will just have to go one way or another with it!