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Had first follow up and am worried

StruTanToot
Posts: 108
Joined: Aug 2012

Hi everyone. I had my first follow up doc visits and scans yesterday.

The chemo oncologist, his resident, and the resident of the radiation oncologist said the PET and CT scans looked good. The radiation oncologist though was more guarded. He said he wanted to see how things look in three months.

The radiation oncologist said there were a couple of highlighted areas. He said he could not rule out the areas being cancerous, but he did not think they were.

So...I was very happy at first and then disheartened. While I think the radiation oncologist was just being careful, I'm feeling pretty down today. I was hoping for an "all clear."

He said there was a highlighted area near my prostate. He said it could be an infection. I could not a thorough DRE because I'm still not healed completely. The doc was concerned about that as well. That area was highlighted too on the PET scan, but the docs think it's inflammation.

Essentially, it looks like it's more wait and see.

Like I said, I'm down and feel like I got bad news. Any thoughts?

mp327's picture
mp327
Posts: 2854
Joined: Jan 2010

I know you would have liked to have gotten the all clear, but at this point in your post-treatment phase, it's most likely that you still have some radiation working, which can cause a light up on a PET scan. My rad onc told me that radiation can sometimes continue working for up to a year! My first PET scan was done just a little over a month after treatment ended, ordered by my med onc, against the wishes of my rad onc, who wanted to wait for at least 3 months. My scan came back with an SUV of over 4! That was quite upsetting to me. However, it was determined to be either radiation or inflammation. I suspect this is the case with your scan as well. I cannot really comment about the area which lit up in your prostate area, other than to say this area was radiated too, so it could be inflammation also.

My next door neighbor is a radiologist and a dear friend who has told me numerous times when reviewing my scans with me that 1) there is no such thing as a perfect scan; 2) PET scans are both good and bad--good because they show EVERYTHING, bad because they show EVERYTHING!

The fact that your doctors will be monitoring you closely should be reassuring and I hope you won't worry yourself sick over this. I think it's quite common to get such results on the first post-treatment scan, unsettling as they may be. I don't think you got bad news. I think you got pretty good news with a little caution mixed in.

StruTanToot
Posts: 108
Joined: Aug 2012

Thank you for your encouraging words. I tend to think you are right in that I got good news with some caution.

One thing...the doc said the lymph nodes looked much better, so I asked him if it had spread to the lymph nodes. He said we would never know. I was so closely monitored before things developed into anal cancer. I don't quite understand how the cancer was more than stage one.

Also, I've read and been told that this cancer is the easiest to cure and that it is usually caught early. I had a doctor tell me that this was the cancer to have if one is going to have cancer...I've read all this info on this site.

I hope all that is true.

Thank you Martha.

Marynb
Posts: 1134
Joined: Aug 2012

I agree with what Martha said. I was told that for the first 6 months a scan would be in inconclusive due to inflammation from radiation. I think our biggest challenge post treatment is to try not to worry about recurrences and live eah day with joy. It is so hard to do! I tell myself that if the day comes that I get sick again, I will worry about it then. I have adopted a Scarlett O' Hara attitude and tell myself I will worry about it tomorrow. So, for today, you have not been diagnosed with a recurrence. It's a good day! The good news is that they are keeping a close eye on you. We are all challenged by this possibility. The truth is that everyone faces their mortality every single day, they just don't think about it. Living in the present is all we can really do.

So, worry about it tomorrow, and tomorrow worry about it the next day... For today, live it up! All is well.

Hugs.

Mary

StruTanToot
Posts: 108
Joined: Aug 2012

Thank you Mary. I knew when I posted what happened and how down I was feeling that you all would come and rescue me. You and Martha certainly have done that.

Hugs to you too!

Stru

pializ
Posts: 256
Joined: Nov 2012

Thank goodness for this site and common sense by those who have 'been there'.

Day at a time!!!

Liz
x

z's picture
z
Posts: 1251
Joined: May 2009

Hello, I had a pet scan after completing tx and registerd a 4.2 suv in the anal area. My oncologists told me it was inflammation from the radiation. I completed tx 6-30-09 and all is well. These scans are so sensitive they pick up everything. I bet its inflammation. I wish you well Lori.

islandgirlculebra's picture
islandgirlculebra
Posts: 135
Joined: Dec 2012

Take heart, I had a Radiation Oncologist tell me about three weeks after my second chemo treatment when I was still in the hospital that I still had cancer and would need surgery. Three months after that I had a PET which showed no cancer and the doctors were "stunned". My Chemo Dr. told me that radiation keeps working for quite a while after you stop treatments and she didn't order a PET scan until 3 months had passed.....

horsepad's picture
horsepad
Posts: 79
Joined: Apr 2012

I had a scan right after treatment and had several "hot spots" in my lympth nodes and the one spot on my liver had shrunk but was still there. I was devastated. Although the original tumor was gone, the other areas lit up. My other oncologists at a different hospital said I would not get an accurate reading for at least 3 months because the radiation and chemo are still working. Three months later, I had another pet scan and everything came back good!

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