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+ on Lymph Nodes => Blood Vessel => PET scan

JoyD's picture
JoyD
Posts: 81
Joined: Feb 2009

I just got back from my Oncologist last Tues. As you all know, they found my cancer cells in my lymph nodes (2 of them). Anyway, had masectomy on left side on 2/26. Had an appt w Surgeon on March 4 and told me that out of 16 lymph nodes, only the 2 original Lymph nodes had cancer and both my husband and I were happy about it. Then last Tues, had an appt with Oncologist. He told me that my cancer cells in not behaving the way it should be. My cancer cells is called Muscinous Carcinoma that should be a slowing growing cancer cells. Somehow, pathology report showed that it was positive in my blood vessel. I was devasted with the news, as if something hit me again! He said he would like me to go through a PET scan to see where the cancer had gone. I will have the PET scan tomorrow and I am scared of the result. He is also doing an aggressive treatment for 20 weeks => AC x 4 (every 2 weeks), followed by T x 12 (every week), then finally radiation for 6 weeks. He was also asking me if I would like to sign-up for the clinical study of Avastin. Although, it will be a 50/50 chance of getting it. I agreed to do it since if I get the Avastin it will lower the chance of the cancer coming back since it block off or cut off the blood vessel of these nasty cells.

I don't know what to expect and I have slept since Tues night. Any comment about this?

JoyD

mimivac's picture
mimivac
Posts: 2147
Joined: Dec 2008

I am sorry for this latest news. Going through diagnosis is so hard because each bit of new news can be like another blow. The tests, the waiting, the wondering... I remember being told that my cancer would respond to hormone therapy and then being tested again only to find that it is a type of aggressive cancer that does not respond to hormone drugs. I thought I knew my diagnosis, so this new news devastated me. I do know how it is.

The good news is that they only found it in 2 lymph nodes. Vascular invasion does not necessarily mean that the cancer has metastasized. There are many women here with lymph node involvement and/or vascular invasion that do not have distant metastis. I know it is hard, but try not to panic before the PET scan. In any case, you and your doctor are attacking the cancer aggressively. Avastin may be a breakthrough drug, so it is good that you're in the trial.

Mimi

JoyD's picture
JoyD
Posts: 81
Joined: Feb 2009

Thanks mimivac for those encouraging and kind words. I need to correct something, I have NOT slept since Tues.

You are right, I just have to wait til I get the result since worrying won't do me any good.

If they find something, lets say in the bones.....will the Dr include another drug to treat the bone area or he is just going to use the AC+T that I described above since the origin came from the breast?

JoyD

mimivac's picture
mimivac
Posts: 2147
Joined: Dec 2008

Joy,

I don't know the answer to that. Your doctor may use bisphosphonates along with the chemo to help strengthen the bones. I found this quote on the American Cancer Society site about bone metastasis: "If systemic treatments work (meaning chemo), the symptoms of the bone metastases will go away and new symptoms are not likely to develop soon." But let's not assume you have bone mets yet. It's unlikely given that only 2 nodes are positive for cancer.

Can you take something to sleep? I went through this when first diagnosed. Your adrenaline and "fight or flight" response is probably through the roof right now. But you need sleep to fight this thing.

Mimi

Moopy23's picture
Moopy23
Posts: 1753
Joined: Jan 2009

Hi, Joy, I agree with Mimi about the unlikelihood of metastasis. I had 6 lymph nodes involved and the same agressive cancer that Mimi had--but I still had no metastasis (thank God). So, with your having only 2 nodes affected, and a slow-growing cancer, it is much less likely that there will have been any spread. I hope that is of some reassurance to you.

I found also that Ativan or Zanax helped with anxiety and sleeping. You reallly need your rest to help prepare your body and mind for the treatment to come. If you don't want to get a prescription, Benadryl works for many people, or Tylenol PM.

Joycelouise's picture
Joycelouise
Posts: 493
Joined: Nov 2007

Mimi is right about taking something. Ativan was prescribed to me and there were some times when it came in useful. Including before my chemo treatments.
I also had a Pet Scan. I do not know if cells were found in my blood stream. Getting both a Pet Scan and a bone scan were normal procedure.
I had the same treatment as you, two weeks apart followed by radiation. There were times when I thought my onc. was trying to scare me a little. Later I found out that she just wanted to be sure I didn't opt out of chemo/rads like some people do. Opt out, heck, I was glad to get them. I already thought I was gonna die. I can't believe that some people would not be scared %^$*less (my censor) so for me the tough talk just wasn't necessary to bring me down to brass tacks.
I wish you good things, and good news. Love, Joyce

rjjj's picture
rjjj
Posts: 1826
Joined: Jan 2009

I know the waiting is so very hard. Nothing terrifies me more than more tests..and after being told horrid news once..i expect to get kicked in the teeth again by the beast. That is why like you i will do anything i can to reduce my chances of reocurance.
I asked my Dr. about any clinical trials and they didn't know of any for my type of cancer. I also asked my surgeon at the last minute to take off both breast even though only my left had CA and they told me it was to late. And that we would keep a very close watch on the other breast. But i still wish i would have had a bilateral just to reduce chance of reocurance.
You may need something to help you sleep as Moopy pointed out ativan and zanax is what they gave me. I only need the ativan for about the first week-10 days once in awhile. But my treatments are 3 weeks apart so i have that extra week to recoup.
I will be praying for you that all tests come back good, and that you get the rest you need to fight and conquer!
Hugs
jackie

Moopy23's picture
Moopy23
Posts: 1753
Joined: Jan 2009

Jackie, you will be taking Herceptin, right? The oncologist in St. Louis told me that my not being able to be helped by that drug was a loss for me. So that makes me think that being able to take Herceptin is a big plus. Maybe it makes clinical trials less significant as you already know Herceptin works.

rjjj's picture
rjjj
Posts: 1826
Joined: Jan 2009

I will be on Herceptin for a year infusions every 3 weeks. but they say my hair will grow back and it will only be 30 min. I also will be taking some kind not sure yet of estrogen blocker for 5 years. I guess sometimes i tend to dwell on the thought..already..of reoccurance. I think this is the cause of most of my depression. Hopefully when gardening time comes and spring..i will be feeling better about things. I need to find the joy in life again. I know i can do it. I know you can too. You and Joe are taking positive steps for a long life together..I am so happy for that.
hugs
Jackie

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