PET scan results: stage three with lots of swollen lymph nodes in pelvic area

StruTanToot

Last Friday, I posted that the PET scan showed lymph node involvement, and the resident told me stage two.

I met with the doc today, and he said my pelvic area was full of swollen lymph nodes. He said staging was difficult, but he did say stage three. He said the prognosis was still very good, but would be slightly diminished if the lymph nodes are cancerous.

He said there's no way to know, so he has to treat the nodes as cancerous. I go to Duke, but I also got my first opinion from UNC. The doc at UNC didn not do a PET scan. I later asked the doctor at UNC why he didn't do a PET scan. He said that HIV can cause swollen nodes and can make the PET scan confusing. He also pointed out that I have been closely monitored, so the abd/pelvis CT scan was sufficient. He had told me stage one and "completely curable."

When he talks about me being monitored...for the past three years, I've had to have condyloma removed about every six or seven months. I asked the doc today how I could progress to stage three since I had surgery in December. He told me several ways. I think one was that a biopsy might not have been done of the cancerous condyloma.

Anyway...I don't know. I guess I just want to see what you all think. I've been feeling good and I'm still positive, but it just worries me a bit more.

As always, thank you so much for all you do.

joane0328

Hi StruTanToot,
I have been
Hi StruTanToot,

I have been thinking about you and including you in my prayers.

I don't have an answer for you, as this is all new for me as well, and today, when I met with the radiation oncologist, I was told that I needed a PET scan before treatment can begin, due tp enlarged lymph nodes from my CT scan.

I was told that lymph node involvement is a stage 3, and that is what I am also.

From what I gathered, they would radiate the lymph nodes regardless, ( for me at least) due to my tumor size.

At any rate, this now pushes back start of treatment, because the PET scan is mobile, and tests on Monday and Wednesdays. So scheduled next Wed, 9/5, with CT planing on Thursday or Friday next week.

A little frustrated that this could not have been scheduled sooner, and by the lack of communication between the MD's.

I have to keep reminding myself that the medical field has more variables than certainty's.

I also find that I need to absorb new findings, facts for at least 24 hours, and in time, they gain acceptance in me. Worry is in my blood, but am trying and succeeding better than I have in the past.

Well wishes, and stay strong.

joan

Marynb

Hi stru and jjoan
I am wondering whether they would do a biopsy of the lymoh nodes. The reason that I ask is because I had a similar diagnosis at first. The docs decided to go in an biopsy the lymph glands. It was a night in the hospital after the procedure. Turns out, yes, they lymph glands were malignant. However, the cells were NOT A MATCH! That is how they found out that I had another cancer in my body somewhere. That led to a fishing expedition with scans to find the tumor, which was in my intestinal tract! I had 2 cancers. I lucked out in a way. I spent an entire weekend thinking I had stage 3 anal cancer until the results of the lab showed NO MATCH. So, if the doctors had not been diligent, I would have been much sicker, or dead by now. After my treatment for anal cancer...and after some time to heal up, I had surgery to remove the tumor in my intestine and the lymph nodes that were malignant. Honestly, I was at the best hospital!

Marynb

Hi stru and jjoan
I am wondering whether they would do a biopsy of the lymoh nodes. The reason that I ask is because I had a similar diagnosis at first. The docs decided to go in an biopsy the lymph glands. It was a night in the hospital after the procedure. Turns out, yes, they lymph glands were malignant. However, the cells were NOT A MATCH! That is how they found out that I had another cancer in my body somewhere. That led to a fishing expedition with scans to find the tumor, which was in my intestinal tract! I had 2 cancers. I lucked out in a way. I spent an entire weekend thinking I had stage 3 anal cancer until the results of the lab showed NO MATCH. So, if the doctors had not been diligent, I would have been much sicker, or dead by now. After my treatment for anal cancer...and after some time to heal up, I had surgery to remove the tumor in my intestine and the lymph nodes that were malignant. Honestly, I was at the best hospital!

joane0328

Marynb said:

Hi stru and jjoan
I am wondering whether they would do a biopsy of the lymoh nodes. The reason that I ask is because I had a similar diagnosis at first. The docs decided to go in an biopsy the lymph glands. It was a night in the hospital after the procedure. Turns out, yes, they lymph glands were malignant. However, the cells were NOT A MATCH! That is how they found out that I had another cancer in my body somewhere. That led to a fishing expedition with scans to find the tumor, which was in my intestinal tract! I had 2 cancers. I lucked out in a way. I spent an entire weekend thinking I had stage 3 anal cancer until the results of the lab showed NO MATCH. So, if the doctors had not been diligent, I would have been much sicker, or dead by now. After my treatment for anal cancer...and after some time to heal up, I had surgery to remove the tumor in my intestine and the lymph nodes that were malignant. Honestly, I was at the best hospital!

Pet scan
My CT scan of chest, abdomen and pelvis was clean... just the enlarged lymph nodes. I will wait to see what the PET scan shows, but will definitely ask about doing a biospy.
Thanks for the input
Joan

Marynb

joane0328 said:

Pet scan
My CT scan of chest, abdomen and pelvis was clean... just the enlarged lymph nodes. I will wait to see what the PET scan shows, but will definitely ask about doing a biospy.
Thanks for the input
Joan

Scans
My initial scans did not show the tumor in my intestinal track......it took an octreotride scan after they did the first biopsy. I had a lot of scans after the initial scans

sandysp

Marynb said:

Hi stru and jjoan
I am wondering whether they would do a biopsy of the lymoh nodes. The reason that I ask is because I had a similar diagnosis at first. The docs decided to go in an biopsy the lymph glands. It was a night in the hospital after the procedure. Turns out, yes, they lymph glands were malignant. However, the cells were NOT A MATCH! That is how they found out that I had another cancer in my body somewhere. That led to a fishing expedition with scans to find the tumor, which was in my intestinal tract! I had 2 cancers. I lucked out in a way. I spent an entire weekend thinking I had stage 3 anal cancer until the results of the lab showed NO MATCH. So, if the doctors had not been diligent, I would have been much sicker, or dead by now. After my treatment for anal cancer...and after some time to heal up, I had surgery to remove the tumor in my intestine and the lymph nodes that were malignant. Honestly, I was at the best hospital!

Diagnosis
It is a miracle we got diagnosed, isn't it? Just think of people who never get diagnosed and just get sicker and sicker till they die. I am so grateful I passed the blood and also was diagnosed for ovarian tumors that were benign. As tough as the treatment was, I feel so much better than I did with stage 3 invasive anal cancer T2 N1 (with lymph node involvement) and those tumors which also made me very uncomfortable. You have a great attitude and are an inspiration to me.

Sincerely,
Sandy