wife diagnosed in early May.

dubois1961

This is only my second post here. I have actually been so freaked I have been unable to read about this disease. According to the docs my wife is stage 1. She has been going to a major hospital in a large metro area for treatment. When they did the pre-treatment scans (CT only)they found 2 nodules in her liver and 2 in her lung. At the time the doctor(plus the Tumor board) said he(they) were very confident that they were not related to the cancer.
She had another CT scan done after treatment in early September(4 months after initial ct scan). According to the doctors there was no change in the nodules at all. At the time he said they will do another scan in March (about 6 months and evaluate the lung nodules) to make sure they haven't changed in size. The CT scan never picked up any lymph node activity (though I know there is error here often with CT scans).

what is the protocol for scans post treatment. I also read on some anal cancer sites that multiple lung nodules were likely mets. Any help here would be appreciated. BTW my wife is not worried at all. I wish I had her demeanor. How fast would lung and liver mets grow?

mp327

Hi dubois--
I am presuming that your wife had the standard chemo/rad for treatment. Is that correct? If she's never had a PET scan, which is usually much more sensitive than the CT scans when it comes to picking up abnormalities, I think I would press her doctors to do a PET. I would have to question why the doctors think the liver and lung nodules are not related to the anal cancer, since no biopsy has been done. The PET scan may be able to pick up on any cancer cells in the nodules, which I would think the doctors need to know. I have had lung nodules show up on scans and they are always deemed to be calcified and from old histoplasmosis disease. However, on my last CT scan, there was one nodule that was questionable, as it appeared to be new. My oncologist reacted the same way your wife's docs did in that he wanted me to have another CT in February, which will be 6 months since the last one. It's a nervous wait and I can understand your concerns.

As for how fast liver or lung mets can grow, I can't answer that. The protocol for post-treatment scanning, according to the National Comprehensive Cancer Network, is chest/abdominal/pelvic imaging annually for 3 years in T3-T4 or inguinal node positive cases. They no longer recommend routine follow-up scans for T1-T2 tumors, which would include your wife and myself.

I urge you to go to the website for the National Comprehensive Cancer Network (NCCN.org) and check out these guidelines for yourself. There's some good information there. Also, the UCSF (University California San Francisco) website may have some answers for you. I wish your wife the best and hope these nodules turn out to be benign.

dubois1961

mp327 said:

Hi dubois--
I am presuming that your wife had the standard chemo/rad for treatment. Is that correct? If she's never had a PET scan, which is usually much more sensitive than the CT scans when it comes to picking up abnormalities, I think I would press her doctors to do a PET. I would have to question why the doctors think the liver and lung nodules are not related to the anal cancer, since no biopsy has been done. The PET scan may be able to pick up on any cancer cells in the nodules, which I would think the doctors need to know. I have had lung nodules show up on scans and they are always deemed to be calcified and from old histoplasmosis disease. However, on my last CT scan, there was one nodule that was questionable, as it appeared to be new. My oncologist reacted the same way your wife's docs did in that he wanted me to have another CT in February, which will be 6 months since the last one. It's a nervous wait and I can understand your concerns.

As for how fast liver or lung mets can grow, I can't answer that. The protocol for post-treatment scanning, according to the National Comprehensive Cancer Network, is chest/abdominal/pelvic imaging annually for 3 years in T3-T4 or inguinal node positive cases. They no longer recommend routine follow-up scans for T1-T2 tumors, which would include your wife and myself.

I urge you to go to the website for the National Comprehensive Cancer Network (NCCN.org) and check out these guidelines for yourself. There's some good information there. Also, the UCSF (University California San Francisco) website may have some answers for you. I wish your wife the best and hope these nodules turn out to be benign.

Nodules
She was treated with the standard treatment, nothing for mets(because they acted like it wasn't an issue). I brought this up and he said if they thought she had mets they would treat that immediately. I am going to have to communicate with him.

7243

dubois1961 said:

Nodules
She was treated with the standard treatment, nothing for mets(because they acted like it wasn't an issue). I brought this up and he said if they thought she had mets they would treat that immediately. I am going to have to communicate with him.

Issues
I hear your love and concern for your wife! Okay ... write down your questions and take them to the physicians. Get the answers you need so you can try and relax ... I understand your concern and worry and don't want to dismiss it. I agree with Martha ... a PET will differentiate between cancer and normal tissue, however it is not part of the NCCN guidelines. It is not unheard of to have liver nodules that are normal. Remember, these physicians are smart people, however they don't go into deep explainations when they believe things are normal...so you have to ask why they believe these areas are normal. Get the answers you need directly from the physicians ... this will ease your mind and let you have a peaceful holiday.

Hang in there and keep us updated ... I certainly understand not wanting to read about this. Reassure yourself that this cancer is very treatable and cure rates are quite high. Your wife sounds quite early stage ... take some comfort in that if you can.

Have you looked into any "cancer care giver" support groups in your area? Ask the cancer center ... you might get some comfort out of going to a support group of spouses/partners of cancer patients. Hang in there ... sending you support and well wishes!

Its normal to worry like you are worrying ... get your questions answered even if it means an extra appointment.