What to do

Susansn · November 2009

Thanks to a new mini schnauzer puppy I found my lump by accident. It was removed by a partial masectomy on September 29th - no lymph nodes involved. My surgeon referred me to an oncologist with the idea of only radiation would be needed and possibly hormonal therapy. My oncologist ran some type of new test called the unk test (I am spelling phonetically) and I have a 31% chance of reccurrence within the next five years. He is recommending chemotherapy and possibly clinical trial (that is of course up to me) with a follow-up of a pill every day for five years and radiation. I went by myself because I did not expect this type of treatment recommendation. My daughter and I are going back on November 6th, what kind of questions do I need to ask, where can I do research on this test, any suggestions, or recommendations of any kind. I am terrifed of chemo. My husband disagnosed with stage I pancreatic cancer was literally killed by the chemo in the clinical trial before the actual cancer had a chance to spread. I know this is not the same things but I am very afraid and would appreciate any info anyone can send my way.

hrf · November 2009

I'm sure many here will offer suggestions but I don't mind starting.

First of all, most surgeons do not know enough to offer a treatment plan so it's unfortunate that your surgeon made suggestions that you assumed to be accurate. It's certainly very good that no lymph nodes were involved but you need all the details of your pathology.

How large was the lump? Was it triple negative or was it hormone receptive? The Oncotype score is relatively new and is helping women determine if chemo is necessary. A high score means a strong chance of recurrence without chemo. What kind of chemo is the doctor recommending? Is there a family history of breast or ovarian cancer? Will you be having a genetic test for BRCA?

Many of us on these boards have had chemo and survived. And many of us have had rads and are taking those little white pills for 5 years. There is also a lot of information here regarding alternative methods which you can also explore. And most importantly there is a lot of support here as you go through each step.

dlb823 · November 2009

Susan ~ I'm so sorry about your husband. That must have been an horrific experience to go through, so I can totally understand why you're terrified of chemo.

One thing you need to do when you see your oncologist again is ask exactly what your Oncotype-DX score is. It will be expressed in a number such as 18 or 25. Then you can go on both the informational section of this website (bar at very top) to read how your score relates to others in terms of the possibility of recurrence, and you can also find a thread here called Oncotype-DX Rollcall, where many women have posted their score and their decision about chemo. Also be sure to ask all of your doctors for copies of any labwork or reports they have for you, so that you can start your own reference file. And be sure to ask your onc exactly which regimen he's suggesting for you.

If you do need chemo, please be assured that we bc gals are now getting a third generation of chemo drugs that are extremely effective with not nearly the harsh side effects as previous regimens. There are also newer antinausea meds that make it much easier, too. It's not pleasant, but it's highly do-able with severe problems being extremely rare.

Another thing to keep in mind is a second opinion. No matter what an oncologist tells you, you will find that there are no treatment absolutes when it comes to bc, and two or three oncologists could each have different recommendations for you, especially in terms of the actual chemo regimen. So a second opinion is always a good idea.

So sorry you've had to join the club that none of us ever wanted to be in, but I'm glad you found us, and hope you'll keep us posted ~ Deanna

desdemona222b · November 2009

Hi, there -

So sorry to hear about your health problems and your husband. My cousin also had chemo in chemical trial for pancreatic cancer and it is far different from chemo for breast cancer. Please try your best not to be so frightened.

gfbaker · November 2009

Susan, I am so sorry for the loss of your husband and for your recent diagnosis. One not so fun thing about cancer is the treatment suggestions can keep changing in the beginning. A second opinion would be a very good idea. You should get a copy of your pathology report so you better understand what you are dealing with. Age, stage, mets or not, ER/PR or HER2+, family history and the oncotype test all play a role in the decision of what treatment to do. And don't forget that decision is ultimately yours, not your doctors. Chemo isn't fun but manageable and I think not nearly as bad as the fear of it.

Please let us know how things go for you.

Gayle

Anonymous · November 2009

The gals here have given you great advice. I just wanted to add that many of us who got this disease knew nothing about what we were getting ourselves into. "Unk" test probably meant Onco (short for Oncotype). We had no idea what to ask. You have started in the right place...here where so many gals were in your shoes.

Also, I am very, very sorry about your husband. Like the other gals said, chemo is doable. But it is ultimately up to you.

Also, it's a very good idea to take someone with you to the onc (short for oncologist). Taking your daughter is a good idea. She can hear things you will most likely miss.

Good luck and please let us know how you are doing.

Shirley

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