Your opinion in what treatment I should take

Lazzark

I was diagnosis: 4/4/2011, IDC, 2cm, Stage IIa, Grade 2, 0/1 nodes, ER+/PR+, HER2-. As soon as I heard I had cancer I decided I would that this would be a time I should seek a second opinion. I am having second thoughts. After my lumpectomy I went to the general oncologist who recommended AC (X 4)-T (X12. ) He said he was basing his recommendations on age, tumor size, and the results of Adjuvant Online. I asked him what would be the consequences of not doing chemo and according to Adjuvant Online it increased recurrence by 8%. He then told me about the Oncotype DX test and said it would be useful information but no matter what the outcome was he doubted he would change his mind on treatment recommendations.

Then I went to see a breast cancer specialist at a different hospital. She said she was not worried about the size so much or my age. However when I told her what the first doctor recommendation was she was very against using AC-T for me. She said there were less harmful drugs she would use but she wanted to see my Oncotype DX score. Well the score was 9 which shows that chemo may only improve my change of reoccurrence by 2% or so.

In conclusion, I have one test that says by chances of reoccurrence increased 2% and one that says 8% if no chemo. I don't know what to do or what doctor to believe. This is so overwelming as you know.

Thanks for all your input. 

37antiques

Missmuffett,

I agree with your onc, chemo is advised because of the tumor size.  Age does matter, if you are premenopausal, definite chemo. Any doctor that does not calculate the age or size in and want to base treatment only by the oncotype score, well, it wouldn't be nice for me to say.

There may be less harmful drugs, but ask yourself, do you really want to treat cancer with a less harmful drug?  Is cancer less harmful because they have less harmful drugs?  Or would you be more comfortable beating the heck out of it so it thinks twice before trying to come back?

Just my opinion.

singlemom1

I would go for a third opinion.  I have a similiar situation but my Oncotype score came back 30 so I am starting chemo in 2 weeks. If I was in your situation I would seek another opinion to see which way the third doctor goes. Good Luck! This can be very overwhelming as it is your life you are talking about but you do not want to go through extensive SE if you do not need to.

dlb823

I think you need a 3rd opinion, and maybe even a 4th.  My situation was different than yours, but I got 3 opinions, and they were all different.  I decided to follow the advice of the onc @ the NCI-designated facility, because she was really up on the latest research and could point to studies and stats to back up her recommendation.  If you haven't already gone to an NCI-designated cancer centers, here's a list:  http://cancercenters.cancer.gov/cancer_centers/map-cancer-centers.html  

If there isn't one within a reasonable drive of you, call the closest one and see if they can recommend an onc in your area. 

While chemo may be advisable, Adriamycin (the A in the regimen you noted) carries a small risk of both heart damage and also developing leukemia in the future.  The latter risk is very small (like 1 to 2%) --  BUT it's not curable, and since you are young, you would have more years for that potential to develop.  You need an onc who will help you weigh all the pertinent factors.   Deanna

ruthbru

Just from what I know; based on the fact that you are Stage II, I'd say you'd want to do chemo but not all three drugs; probably TC and then go to an anti-hormonal, which is your biggest gun against recurrence since you are estrogen postive.

edited to say that, of course, this is just my opinion and you need to find a doctor whose answers make sense to you and for you.

CoolBreeze

I was stage IIa, no nodes,  and did chemo and herceptin for a year and tamoxifen.  Now apparently stage IV with mets to the liver.  Chemo is not that difficult and is only four months and SEs can be managed.  I figure it's a small price to pay for the rest of your life.  8% doesn't sound like much but I only had like a 7% chance at recurrence.  

I wouldn't play the odds, I would throw everything I had at it.  I did and still had a recurrence and now will do so again and hope for NED.  I am glad you are questioning and checking with doctors - I only want you to know that it can and does come back, even if you are node negative. You don't say how young you are but I was 51 at dx. Not exactly a baby but still pre-menopausal and kind of young for breast cancer.  If you are much younger - 30 or 40s, I would absolutely do chemo.

kittymama

Missmuffet, we are in very similar positions. I'm premenopausal (age 46) with a low oncotype score of 8 (6% probability of recurrence), highly ER and PR, Her2- and trying to decide on chemo. My oncologist advises against it.



Coolbreeze and 37antiques, you suggest that women who are younger (30s or 40s) and/or premenopausal should do chemo. I'm just wondering if your recommendation of a chemo protocol is based on specific studies, your oncologist's recommendations or your gut instinct. I'm struggling with a decision, but am leaning against chemo unless there are specific studies that demonstrate that someone in my situation would benefit by more than a couple of percentage points. Thank you!

raincitygirl

kittymama - on the info pages of this website is a page called "who gets chemotherapy" and it states:  Doctors recommend more aggressive treatments for premenopausal women diagnosed with invasive breast cancer. Breast cancer in premenopausal women tends to be more aggressive, so chemotherapy is often part of the treatment plan.

That said, with an oncotype of 8, I personally wouldn't feel I had enough to gain but I am 57.  According to lifemath (similar to adjuvent), you would extend your life by 258 days with tamoxifen alone or 420 days if you add chemo.  So, approximately 5 months potential gain.  The question then becomes whether the side effects will be worth 5 months or would you rather live 5 months less without side effects.

I started chemo and stopped because I knew when I started that I was doing so out of fear - I speak only about myself here and don't mean to suggest anything about anyone else or their decisions..  As I read more, I became confident that the very small percentage of possible gain was not worth the risks involved.  This is called absolute value.  My absolute value was less than 3% and I have a much higher oncotype than you do.  The truth is that I had four different opinions from oncologists and ultimately, it really ends up being "us" who has to decide something that we are not trained to do. 

Not sure if this is helpful, but it's just another opinion.

kittymama

Thank you, raincitygirl!

voraciousreader

You should consider asking that your case be presented to a tumor board.  That way the doctors will discuss your situation and will come up with a treatment plan.  OR, you can ask for a third opinion.  I had three opinions that only differed slightly but all agreed I didn't need chemo even though I was pre-menopausal, diagnosed at 53.  I chose Ovarian Suppression, Zometa and Tamoxifen.  One doctor didn't think I needed the Ovarian Suppression.  Ultimately, my decision was to do everything and re-evaluate if I had side effects.  So far, so good.

Also check out the NCCN 2011 breast cancer treatment guidelines.

Good luck and thoughts and prayers to you and all of the sisters!

Sherbear

I was pre-menopausal at Dx (36) with no node involvement and got 4 opinions and all were in favour of chemo due to my age and tumour size.  Because of my oncotype score, 17, I did TC x 4.  My onc's said if I was in intermediate or high, I would have been recommended ATC so I just avoided that and I was glad.  I hit it my cancer with a mastectomy, chemo, rads, tamoxifen, exercise, diet, and tons of help from my ND with supplementation.  Am now in chemo-pause, which makes my onc's happy, and doing hormonal therapy as well.  

It's a tough decision and not one to take lightly.  I would get as many opinions as possible as that will make it easier and you will definitely be more comfortable when it comes deciding.  Everyone is different, for me, I went with my gut feelings about what I should do for myself, but that was after quite a bit of research, opinions from as many experts as possible, and soul-searching.  Best of luck, my thoughts are with you!

Lazzark

@ dlb823 thanks for the link to NCI-designated cancer centers. It turns out that the U.W. here is Seattle is rated #5 in the country.

@ voraciousreader- My surgeon did take it to the tumor board and both he and the radiation oncoligist stated they though I wouldn't need chemo but would leave that up to the general ongologist. So I was surprised when he told me  AC (X 4)-T (X12). Did your doctor suggest removing your orarives or just use the supressents?

Thank You lady's for taking the time to give me your very valued opinions. You have all been very helpful. Thank goodness we live in these times where we can meet thousands of supporters when we need them the most.   

ruthbru

Best of luck in making your decisions; I think that was the hardest part of the whole journey!

petjunkie

If you are in Seattle, I strongly recommend getting an opinion at Seattle Cancer Care Alliance. It's one of the top cancer centers in the world. I don't know much about staging, but IIa makes me think chemo. But that's just my gut reaction, not based on any real knowledge.

CoolBreeze

I would never suggest anybody go against their oncologists advice, that isn't what I meant.  

However, if an oncologist is giving you the choice, then I would choose to do chemo.  And, since she has two conflicting opinions, then she might want to get a third opinion.

It's known that the younger you are the more aggressive it CAN be. (not WILL be.)  However, that kind of stuff is taken into an oncologists recommendation.

I've been on here a long time and I see a lot of women afraid to do chemo, so that's where my mind was when I composed my post.  And, it's not the most fun thing in the world to do but it is not as awful as your imagination makes it out to be either, and can be managed.  It's not like the movies and I worked throughout, chaperoned my son on field trips,etc.

I guess I should just say that women need to make decisions based on statistics and logic and not fears, and that doesn't always happen.  

However, the woman who started this thread seemed to be trying to make her decision based on facts, so I don't know what I was talking about!    It's hard to know what to do when two doctors give you different advice so I guess  you have to go with your gut, or get another opinion.

And, most people do not have their cancer return, I just got unlucky.  Don't go by me!   

ruthbru

And you do want to do everything you can to minimize the chance that you do ever have to do this again. As Coolbreeze says, while chemo is not fun, it is doable, and if you decide to do it; remember that it is working FOR you, and a mean but powerful alley against your real enemy- cancer.

mrsb45

I was 50 and pre-menopausal 1st time around (2008).. Sentinal node neg and recommended lumpectomy, 7 weeks of rads and Tamoxifen (stage 1).  Told I had <1 % chance of recurrance. Well 10 mos, later had local recurrance in same spot while on Tamoxifen   Wasn't taking any chances 2nd time, had BMX, right prophylactic. ( nodes removed all neg but had lymph invasion but no vascular. My oncotype surprisingly came back 37 so i did 4-AC and 12 Taxol (only did 11 due to blood counts and neuropathy). My path report after surgery showed ER only slightly pos. and PR neg. with ADH in right breast that was pmx. Now on Arimidex and just pray no cells travelled anywhere else. I feel the doctors try and treat as conservatively as possible for least trauma for the patient but it ends up being more  traumatic to have a recurrance..Good luck with your decision .. I remember how stressful this time was but get your opinions and go with your gut...

mawahr

I was 34 when diagnosed in 1990 with ductal cell cancer and had a mastectomy.  My nodes were negative but  the doctors recommended 6 months of chemo then tamoxifen.  I chose 3 rounds of chemo followed by 6 years of tamoxifen.  It's been 21 years with no recurrence of cancer.  I would recommend following the advice of your oncologist, at least for some of the chemo.  It will be tough but well worth it in the long run.  Good luck to you!

voraciousreader

I still would seek another opinion from a teaching hospital. Regarding my case, it was suggested that my ovaries be removed but I chose chemical suppression instead. My niece who is a medical oncologist thought I didn't need chemo or the ovarian suppression, but at 53 I had enough periods and thought I'd give it a try. I had no side effects at all. No flushing, no weight gain. Nothing. I will continue this protocol for another year and then reevaluate if I need to continue with the ovarian suppression.



My advice to you is to get as many opinions as you need until you are comfortable with your treatment protocol. And remember, nothing is written in stone. You can always reevaluate if you get side effects. Good luck!

mdg

You can see my stats below for diagnosis.  I am 46 years old and was in great health before the big "C" came along.  I did the oncotype and my score was 17.  My tumor was a bit smaller - 1.4cm.  My first med onc at a NCI said no chemo with a score of 17.  I felt uneasy with this because my pathology report indicated angiolymphatic invasion which means the cancer had an opportunity to spread by blood.  I opted for a BLMX.  I questioned the med onc on the angiolymphatic invasion and she seemed to think I was worrying about it too much (whatever.....seems like something to worry about to me).  She said if I wanted chemo or had been an intermediate oncotyp score (18 or higher) she would recommend TCx4.  She said at 17 no chemo but at 18 or higher it would be a personal decision.  I personally didn't feel OK with at 17 no chemo but at 18 it may be good for you.  I got a second opinion at another hospital that was not an NCI.  They presented my case at tumor board and 3 of 4 med oncs thought chemo would be beneficial for me.  Quite honestly I had to make a decision I would be OK with for the rest of my life.  I have a 4 year old son and I knew I could never face him if the BC came back and I did not do EVERYTHING I could.  I opted for chemo.  I finished my TC x 4 on 5/4 and did very well.  I used the cold caps to save my hair and go back to work tomorrow.  No one at work (other than my boss) even knows I had BC.  Chemo is not fun, but it was easier than I thought it would be.  Did I have some side effects?  Yes, but mostly they were temporary or manageable.  I am glad it's over.  I have my exchange surgery next month and am looking forward to being done with surgery and treatment for a while.  I start Tamoxifen this week too as I was premenopausal before DX. 

I have to tell you that making the decision on chemo was the most agonizing decision I have had to make in this process.  It was hard to say "yes, I am doing chemo".  I lost sleep and weight over making this decision.  NOw that it's done, I am glad I did it.  I am doing better than I thought.  Some people handle chemo very well - you never know. 

Good luck making your decision.  I know how hard this is!  Hugs!