Making a choice for which Chemo Plan you want???

ThinkingPositive

October 23rd, had MX, sentinel node biopsy and auxilliary lymph node dissection. Finally got my results from pathology last Friday.

Confirmed DCIS, but also there was IDC, 1.1cm, stage 2a, maybe grade 3, ER+ PR+ HER2 negative 1 positive sentinel node, took 16 more and all were negative.

Being told definitely hormonal drug for 5 years but after chemo, because of the 1 positive lymph node, being told chemo would benefit as it would reduce the risk of recurring or kill a cancer cell that may be floating around, but being given two plans to choose from...how the heck do you decide???

Adriamycin, Cytoxan, Taxol

or

Taxotere/Cytoxan

Also told that I should talk with a radiologist to see if they would recommend radiation afterwards..

Seems like aggressive treatment or not? And if anyone can offer any advise on the two proposed chemo treatments. Thinking that chemo would start the week after Thanksgiving... Has anyone gotten second opinions about their treatment plans and do you have to bring all your scans, reports, everything? or has anyone been given a choice of treatment plans...or with this diagnosis, are these the treatments? And just leave it at that? Husband is scaring me with all the reasons that the side effects from the drugs that prevent side effects can cause harm as well as the side effects from the chemo to the point where I am a nervous wreck about making a decision.

Hortense

(((Hugs))) to you. I have been in your situation and understand. It sounds like pretty common treatment. My diagnosis was fairly similar to yours.

I was given the choice of the same two chemos - TC or ACT you have, plus another - CMF?, so had three, plus the option of no chemo and only taking a hormone blocker after radiation. I thought the medical staff was crazy. I felt that they were the doctors and should be telling me what needed to be done, not asking me what I wanted because cancer was so new to me and I knew so little about it, but I learned that it doesn't work that way. I remember posting on here to complain and asking pretty much the same questions as you have.

I did seek a second opinion at a top hospital across the street from the cancer center where I had surgery and was told pretty much the same thing, much to my frustration. And, yes, you will need your records. In my case, they were simply emailed from one hospital to the other.

I asked my first oncologist to have the Oncotest. It is done on a piece of your tumor by a lab in California and tells you whether you would benefit from chemo or not. Fortunately, my insurance covered the cost as it is expensive. My Oncotest score indicated that I would benefit from chemo. That helped me make a decision with my doctor.

I opted for Taxotere Cytoxane rather than ACT, which is the harshest, because of two health factors I have and because my doctor felt that since I had clean margins in my lumpectomy and would be having radiation followed by taking Arimidex for five or more years, that T/C plus radiation and Arimidex would be enough to drop the percentage of recurrence way down. ACT wouldn't have given me much more of a drop, I think only 1%. You will need to discuss your case and factors with your doctor to help you make the right decision for you.

I did not want to lose my hair so I used cold caps to save most of it (google: Penguin Cold Caps and also The Rapunzel Project for more information). I had to switch doctors and hospitals to do so, but it was worth it to me. Cold caps are more successful with T/C than ACT.

If you choose to have chemo, read through chemo threads. I learned a lot by doing that. I learned to ask for Emend to be given to me to prevent nausea and about what to expect during the course of treatment. The ladies on here are very supportive. I may be wrong, but it seems to me that these who were more active during chemotherapy seem to do better. I know that when I pushed myself to get going I would start feeling better faster after each treatment than when I lay around.

Radiation was easier than chemo and is nothing to be feared. It's every day for a few weeks, but each treatment only takes about ten minutes, most of which is getting into the right position for the treatments. The radiation itself doesn't feel like anything and mine were simply two separate short bursts during which I counted up to about 19, so they lasted less than a minute total.

Ask your doctors to go over the percentages of recurrence with you, again if necessary, until you feel you understand what they are saying - and take notes. Ask them about each type of chemo and its side effects. It all takes a while to process. Then make the decision you think is best for you.

Stay positive, I think it makes a huge difference in how you handle treatment and I think it is strong medicine in itself. I stayed positive, focused on moving through treatments, never cried or got depressed. Cancer is not a death sentence. It is a disease. Get the best treatment and take good care of yourself.

Best wishes!

Holeinone

thinking positive,

Great advice from Hortense. Adrimyicin is nicknamed "the red devil". It is red in color, and makes you feel like you are in hell. I hated every minute of the 2 months on it, dose dense.

I did not get a 2nd opinion, small town, only one center. I was dx stage 3, so I was getting the works. I decided in the beginning to trust my Drs. & take it one infusion at a time. Some ladies report that chemo was a breeze for them, everyone reacts a little different. No picnic, whatever you decide, but doable to know you gave it your best shot.

ThinkingPositive

Thanks for responding .. Hortense, how did you decide? And also did you have any further testing before you started the chemo?

Akitagirl

Hi ThinkingPositive,

I just sent you a PM. Just wanted to clarify that I used the chemical name for Adriamycin...doxorubicin. They are one and the same. Adriamycin is the brand name. It gets confusing when there is both the generic and brand name - most pharmacists/physicians and especially pharmaceutical R&D folks use the generic names. :-)

R.

Hortense

ThinkingPositive - After getting a second opinion, I decided I liked the oncologist doctor at NY Hospital's Breast Center better than the one I had first met with at Sloan Kettering where I had had my surgery. That was because she spoke to me and with me, not at me. She listened to my concerns and helped me go over my choices until I understood them better. I felt like a person, not just patient number #3892.

Before I ever thought of getting a second opinion, I had asked, actually insisted, that the first oncologist have an Oncotest done on my tumor to see if I would benefit from chemo at all as I wasn't thrilled by the idea. At first she resisted, however, I had done my homework on here and knew that an Oncotest could be beneficial for a woman of my age at the time, 63, who was post menopausal and who also had node involvement. If I hadn't known that node involvement made difference for older women, I would have accepted her statement that I didn't fit the profile of those who would benefit. But, thanks to what I had learned on here, I knew she was wrong. When I pointed out that the node involvement DID make me fit the profile, she thought about it, agreed and ordered the test. It took about two weeks to get the results.

My insurance covered it, fortunately as it is an expensive test that runs almost four thousand dollars. It is a genome test, so is cutting edge. If you ask for it, make sure your insurance covers it first. It probably will.

After getting the Oncotest results, I met with my first oncologist and her team to discuss possible treatments. I left them feeling frustrated, confused, and somewhat bullied. I almost decided not to do chemo at all, and in fact canceled my first appointment for chemo with them. I spent the next few days reading more, especially on this website. I also spoke to my primary doctor who suggested the second oncologist who she believed was the best private oncologist in NYC and who was also the head of her hospital's Beast Center. Going to meet the second oncologist helped me make the decision to switch doctors and hospitals. It was the right decision for me.

I have to add that I had decided that, for me, keeping my hair was important, not for vanity's sake, but for my sense of well being. My hair is part of my identity, how I see myself everyday. Losing it would have made me feel as if cancer had won. I had found out about cold caps on this website and wanted to use them. Sloan Kettering told me I couldn't use them, New York Hospital welcomed their use. Sloan Kettering has since changed its policy and will allow them, but ladies still have to push through its red tape and resistance to use them, which is ridiculous. Switching hospitals allowed me to use cold caps, plus I liked and trusted the oncologists there as they treated me like a person, not a generic patient.

If you have doubts, go see another oncologist. You can always choose to stay with the first one. One thing I have learned is that we are not just people with cancer, we are consumers. We have choices about where to buy our treatments with our insurance. Your loyalty is to yourself, not to a particular doctor or hospital. Do what feels right, but base it on sound information.

T/C is strong chemo, though not as strong as ATC. Had I taken ATC, I might not have been able to keep most off my hair. I understand that living is more important than having hair, but my doctor did not feel that I would gain a benefit of more than 1% from ACT, so the decision to go with T/C was made on the percentage basis. Not keeping hair.

Your oncologist will help you make the right choice for your particular case. What is right for me or someone else, might not be for you depending on many factors. I have a mild heart murmur and my node biopsy discovered that I have an indolent form of Lymphoma. My oncologist was concerned, in my case, that ACT could cause me more problems that the 1% gain was worth - future heart problems or waking up the Lymphoma. That is what I mean by factors. If my second oncologist had thought my best chance at beating cancer was to take ACT, I would have taken it.

Listen to your doctors and weigh what they tell you. Understand the side effects and the benefits of each treatment. It's important that you do. Side effects vary, some are temporary like constipation, feelings of tiredness, hair loss, some are more long lasting like if you get "Chemo Brain" as I have. Typing is a problem as I keep hitting wrong keys, I forget names and other things, doing math is hard. This would make an intense career difficult for me, but as I do not work I can live with them. If that is the trade off for getting rid of cancer and living a long life, it's ok with me.

Not everyone gets long lasting side effects, I believe most do not. I know women in very high level corporate jobs who are just fine after chemo. Killing off cancer cells is paramount, the rest is not as important.

Best to you, Sarah

Kicks

I was very comfortable with my Chemo Dr and he said DD A/C neoadjuvant but would change IF it wasn't working.  It did.  After surgery when I saw him, he told me the recommemdation of Boards at several Centers he is involved with.   I chose the one that was unamously recommend as the best - 12 weekly.Taxol (do not remember the other options).  I made the right decision - it's 5+ yrs and still NED (as far as I know today).

muska

Hi ThinkingPositive, I was offered two options and ACT that is on your list was one of them. The other option was similar but slightly more agressive and would require growth stimulator shots (Neulasta) in between chemos to boost blood production. I didn't like the idea of those additional shots and opted for ACT. I am not convinced that growth stimulators boost growth of certain types of cells only.

Hortense

I had a Neulasta shot the day after every treatment. It is a medicine to reduce the chances of infection by simulating the growth of white blood cells that are killed off by chemo. It is commonly given and not aggressive. I was told to take Claratin D to ward off the side effects of Neulasta which can be bone aches, and as a result did not get any.

Kicks

Neulasta is to encourage WBC which will be destroyed by Chemo.  It's to help your body fight infections.  It is common/usual with A/C.  I did it on A/C but not on Taxol.

mmtagirl

great advice by all here. I had the choice of Cytoxan/Taxotere for four rounds every 3 weeks or CMF which would take 6 months. Elected on CT because I thought it would be shorter in duration. Ended up with a reaction to Taxotere which landed me in hospital for 5 days. Was switched to A/c for remaining 3 rounds followed by 9 weekly taxol. Hated every minute but it was tolerable. #10 rads today just to show you what I decided to do. Decisions are super hard and we all come to them from different backgrounds and perspectives.

Only advice...once you make a decision, don't look back!

Nancy2581

I mentioned on the stage II sisters thread that I had the choice between TAC (taxotere) or AC+ Taxol. I chose TAC because it was shorter ( big mistake for me). I didn't end up in the hospital but darn near close. My WBC dropped to .7 and my absolute neutrophils were .4 I think. I think my onc got scared as did I and I was immediately switched to AC + Taxol. It's no walk in the park either but I am managing a lot better.

On the other hand my friend had TAC several years ago and she handled it fairly well. Everyone is different.

Nancy