More surgery and chemo - help

Mar04 · May 2008

Mar04 · May 2008

Hi All,

I met with my oncologist yesterday and thought I would be finding out my chemo treatment only to be told that the surgeons and oncologists on my team are in disagreement as to whether or not I should have more lymph nodes removed. I am triple negative, had a lumpectomy with a sentinal node biopsy. The sentinal nodes were negative but there was a postive node found in my lumpectomy along with my tumor (0.7 cm - grade 3, invasive ductal carcinoma). So, the oncologists think this node is a "sentinal" node and that I should have further axillary node dissection. I don't really want to have further surgery and am fearful of lymphodema. Won't the chemo kill any potential positive nodes that I have?

Also, I was given the option of two chemo treaments:

1 - AC followed by T every other week for 8 cycles

or

2 - TAC every 3rd week for 6 cycles

I am not sure how I am supposed to decide.

Thanks for any guidance you can offer.

NancyD · May 2008

The thing is, I believe the jury is still out on whether chemo actually gets the loose cells floating around in our systems. It works pretty well on solid tumors, and hopefully that includes the local infiltration to axillary lymph nodes.

I'm finishing four neoadjuvant doses of TAC tomorow. The response on the primary tumor has been outstanding, per an MRI, but I really want to hear what my onc has to say about a PET scan I had on Tues. That will tell me if the axillary node we knew was involved has been cleaned up.

I'll post tomorrow if I get the results.

Jule · May 2008

Hi Nancy. I caught your response somewhere else, and I wanted to ask you about the TAC. I start tomorrow for a total of 6 sessions given before surgery. Any words or warning or thoughts? I know it depends on each person, but I thought I would ask. Congrats on getting close to the end with tx.

Julie

Jule · May 2008

Sorry Mar04. It is hard when they don't come to an agreement. Have you done other testing? Once I had 2 out of 5 senteniel nodes test positive, they had me go in for a bone scan and CT scan which luckily is negative. I was told told though that the recommendation is to remove additional nodes during surgery because 2 were positive. Like you, I don't want that to happen as the sentinel node biopsy turned out to be quite a bit larger than anticipated. I had heard about 1/2 inch, and there is a 3 inch scar under my arm....not healed though of course.

Regarding the 2 choices, I would ask why they are presenting these to you and ask what the recommendation is. Which is better than the other for your specific situation? For me, I am going to do whatever I need to get rid of this. I have 1 son and 1 daughter with the oldest being 6 1/2 and so I want to be around for as long as I can. My sister died form breast cancer 6 1/2 years ago, and so I know what this process is like. I would say keep asking questions and see if more tests are warranted.

Good luck and hugs,

Julie

smithlme · May 2008

Mar04,

Today I had my second opinion with another Onc. I wanted to know that everything I have done these past 14 months will give me the best chance of surviving. I am also a triple negative. She explained that triple negative BC responds best to dose dense chemo given for a shorter time, 8 cycles AC/Taxol vs 6 cycles TAC. She gave me the exact same information my Onc gave me. I had no node involvement so I don't have any experience there.

We're given choices because it is ultimately our decision to make. Do your research and trust your gut instincts on what you feel will be best for you...

Linda

formygirls · May 2008

I am also triple negative with a very aggressive tumor with extensive node involvement. I went to two oncologists and both recommended dose dense chemo given for a shorter time, 8 cycles AC/Taxol for me.

Do your own research and get another opinion. Both the doctors did not give me a choice. This is what they both suggested. I would recommend a second opinion if you are unsure.

Good luck.

NancyD · May 2008

Jule, my TAC was every three weeks, and like you I was ER+/PR+/Her2-. My onc and surgeon like to do a combination of 3 doses before and 3 doses after surgery when the tumor is large (mine was 6.4 cm). In my case, my onc decided a fourth before surgery would be my "insurance" dose. I'm hoping that means I won't need the two after surgery, but it won't kill me if I have to do them.

The TAC side effects start almost immediately with constipation for many, and when that clears up it often turns into diarrhea. Taste changes...some people call it metallic, I had a taste of bitter herbs, and then later lost my sense of saltiness. It lessens as the time from chemo lengthens. Hair started falling out about day #15 after my first dose. I had a slight case of periperhal neuropathy (tingling that can become total numbness—and it can be permanent) in my fingers and toes after my second dose, but nothing after my third.

Six doses are a lot for your veins to take. I hope you had a port put in. The infusion takes about 3 to 3-1/2 hours. I've opted not to take the Emend pills (an anti-emetic) as I think that added to my constipation. They start me with a bag of saline, a bag of Decadron (steroid) to support the oral steroid I start the day before, and a bag of Kytril (anti-emetic), then the three drugs sequentially. I don't think there's any order to it. The Adriamycin might be "pushed" through a large syringe into your IV tube...that's interesting to watch. But I've also had it dripped from a bag, so don't be disappointed if you don't get "the show."

Depending on the time of your appointment, you might want to bring something to eat, definitely a bottle of water (drinks lots of water, ginger ale, or clear juice), or something to keep yourself occupied. I usually nap through mine and eavesdrop on the chatty patients.

Jule · May 2008

Thanks Nancy.

NancyD · May 2008

I also wanted to add that they usually are very careful the first time they administer each drug. The nurse will check to see that you are not having an allergic reaction which usually pops up, if it's going to, in the first few minutes. But if they move away and you start to feel strange—a heavy flush or dizziness, blurry vision—be sure to call them back right away.

NancyD · May 2008

The PET confirmed the findings of the MRI, and also noted that the previous enlargements of the lymphnodes are gone, and there was no sign of hypermetabolism...which I guess means the cancer is inactive(dead) in them now. No solid tumor left in my breast, only some small dispursed areas of foci in place of it.

I suspect this will still mean a mx, as what can you do to clean up after that? Gotta take the whole thing because what may be left is not in any one spot. I wonder if this downgrades/downstages me? Do they do that?

Anyway, looking forward to a restful holiday weekend here, with an extra day to recover.

GoodMommy · May 2008

Nancy,

I'm so glad to hear that the TAC is doing its job for you. I had TAC 3 years ago. I am also ER/PR+ and Her2-. My tumor was only 1.4cm; but Grade 3. On the sentinal node biopsy, I had 3 of 5 nodes positive; so I had a mastectomy and elected to have a prophylactic mastectomy on the other breast. During the mastectomy they did an axillary node biopsy and found 12 more nodes positive.

I am currently a 3+ year survivor and the results of your MRI and PET scan are uplifting to me. God bless you as you finish your treatment.

Chris

Mar04 · May 2008

These past two days have been really stressful but I met with a new surgeon and spoke to my 2nd opinion surgeon - all surgeons agree that no further surgery is warranted so I am moving on the chemo. I have appts all next week for my port, MUGA test, etc... and the plan is to start AC followed by Taxol on June 4th. I am scared but ready to get on with it at the same time. Thanks for all of your input!

More surgery and chemo - help

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