Curious

debrajo said:

I have the same as you,
I have the same as you, upsc, only it is 1a. I don't know exactly why they don't have scans except the dr.s at md anderson seem to not want excessive radiation. I have had a chest x-ray once a year to check out two nodes in my lungs that have been there for years and are still the same. One dr. said they were just "body junk"...left over tissue from conception. Other than feeling my neck and throat area they are going solely on ca125. I had two years May 8 '12 out of treatment with(I hope!) no reacurrence. Why the Pap test, I don't know, but I have had a ton of those done over the last three years. Best, debrajo

Kaleena said:

I just had my check-up on
I just had my check-up on Monday. Everything seemed good. With regard to scans, my doctor just advised me that due to new guidelines they will not be doing routine scans anymore unless you have some type of symptoms because of the risk of increase of cancer. The same reason they changed the way they treat prostate cancer.

I asked what kind of symptoms should I be looking for? He said pain (pelvic, abdomin, chest), shortness of breath, constipation, diarreah, vomiting - and these are something out of the ordinary that lasts more than several days or increases.

Since 2005, I have had regular CT Scans approximately every 6 months or yearly. in 2009 I had PET/CTs, PET Scans, MRIs, x-rays - my last scan was in October and it was a CT Scan. As to radiation exposure, the regular PET scan (Not PET/CT) has the least amount of radiation compared to the CT scan.

So now (in my area anyway or with my health carrier) in order for insurance companys to approve scans, you need a reason for them to approve it.

However, I know some physicians do it differently and sometimes if you press, they will give you a scan if you request it. They generally will start with a CT scan - those are usually approved first for a lot of insurance companies.

I do not get a CA125 because it was never an indicator for me.

I hope this helps

daisy366 said:

Thanks Kaleena
But that's a scary thing since many of us, including me, never had any symptoms at all!!!

Besides original crisis with sudden acute pain, the only indicator I had was an enlarged lymph node on my neck - this caught first recurrence. I wonder how many lives will be saved - or lost - due to these new guidelines. And I wonder if it's really a money thing.

I think my doc is a logical and independent thinker, thank God.

pakb56 said:

scans
When I was diagnosed with the brain tumors, that was probably the question most frequently asked of me about lack of body scans. I have to trust and have faith in my doctors but if I think through it, that was probably going to be the next step after my radiation and chemo was finished.

Love to you all,
Pat

bonniep said:

CT Scans - PET Scans
Hello Ladies, I’ve been out of the loop for a while since my ‘freaked out’ experience, because I’ve been going through weekly chemo and daily radiation and it has been brutal. I’ve completed 3 weeks so far and have one full week to go. I am totally exhausted but I know I can get through this. I also had an unexpected surgery to put a stint into my right kidney because it mysteriously became blocked. I had no idea – it showed when the Radiologist/ONC was setting me up for radiation. A follow-up pelvic CT scan was ordered and it verified my kidney was blocked and there were no stones but is the appearance of an enlarged lymph node. It’s not for certain because it is at the site where stitches occurred during my hysterectomy. It could be scar tissue. The CT scan comment ‘suggests’ a PET scan for further evaluation.
First of all without the CT scans, NONE of my recurrences would have ever been detected. My pain in the arm, shoulder and neck was not diagnosed by an x-ray or an ultrasound. My PCP thought I had a pulled muscle so for several weeks I was on anti-inflammatory, muscle relaxers and pain meds. Only after I called my GYN/ONC just to advise and he ordered the CT scan, did the 4.0 x 3.5 mass in my Supraclavicular Lymph node show up. But in that same scan, nodules in both my lungs and many small spots were also found scattered throughout my lungs. I never had any breathing problems or colds, coughs, etc. Further as I proceeded through Taxol/Carbo chemo, a follow-up CT revealed the mass in my neck and the lung nodules had reduced significantly and all the little spots disappeared totally, but a new 2.2 cm x 2.0 cm was now on my T7 vertebrae. I had not had any pain there either. My thing is once USPC metastases; it just picks & chooses where to attach. I am rather proactive, than waiting until this God awful disease spreads and I feel symptoms.
Yesterday, I was discussing the possibility of the PET scan – Again, my ONC told me my insurance would not cover the PET because the original source of my cancer was my uterus. I fought this batter the first 2 years and ended up paying for my on PET. I don’t have the money this time so that’s out of the question. So many with USPC (or other uterine cancers for that fact), seem to get approved for PETs. What is your secret? I’ll ask again what Diagnostic Codes your ONCs use to get approvals. I had Aetna last year and our company changed to United Healthcare. Any suggestions or information to get an approval for at least one PET would be greatly appreciated.

debrajo said:

That is basically what my
That is basically what my dr's said, plus that some cancer feeds on radiation and can even start cancer in great doses. I made 2 years out May 8,'12,and my dr's do a CA125 every time plus a Pap. Someone else on the board said, why have that if you don;t have a cervix, and I really don't know, but they do one every visit. I don't care what they do as long as I stay cancer-free! Know I shouldn't go there, but can't help wondering just what our life span is. All I get is the "every one is different" speech. I didn't really have any problems with nausea, neuropathy,or any thing. I lost the hair and gained 30 lbs I can't seem to lose and I do have extreme fatigue, but have to keep going(I'm taking care of my 86 year old mother). I just wish I had more energy, but have lost interest in almost everything I use to take pleasure in. Wonder if this is drug induced or just being overwhelmed. Any way, please keep in touch...seems like we are on the same path! Thanks for the info, best, debrajo

bonniep said:

CT Scans - PET Scans
Hello Ladies, I’ve been out of the loop for a while since my ‘freaked out’ experience, because I’ve been going through weekly chemo and daily radiation and it has been brutal. I’ve completed 3 weeks so far and have one full week to go. I am totally exhausted but I know I can get through this. I also had an unexpected surgery to put a stint into my right kidney because it mysteriously became blocked. I had no idea – it showed when the Radiologist/ONC was setting me up for radiation. A follow-up pelvic CT scan was ordered and it verified my kidney was blocked and there were no stones but is the appearance of an enlarged lymph node. It’s not for certain because it is at the site where stitches occurred during my hysterectomy. It could be scar tissue. The CT scan comment ‘suggests’ a PET scan for further evaluation.
First of all without the CT scans, NONE of my recurrences would have ever been detected. My pain in the arm, shoulder and neck was not diagnosed by an x-ray or an ultrasound. My PCP thought I had a pulled muscle so for several weeks I was on anti-inflammatory, muscle relaxers and pain meds. Only after I called my GYN/ONC just to advise and he ordered the CT scan, did the 4.0 x 3.5 mass in my Supraclavicular Lymph node show up. But in that same scan, nodules in both my lungs and many small spots were also found scattered throughout my lungs. I never had any breathing problems or colds, coughs, etc. Further as I proceeded through Taxol/Carbo chemo, a follow-up CT revealed the mass in my neck and the lung nodules had reduced significantly and all the little spots disappeared totally, but a new 2.2 cm x 2.0 cm was now on my T7 vertebrae. I had not had any pain there either. My thing is once USPC metastases; it just picks & chooses where to attach. I am rather proactive, than waiting until this God awful disease spreads and I feel symptoms.
Yesterday, I was discussing the possibility of the PET scan – Again, my ONC told me my insurance would not cover the PET because the original source of my cancer was my uterus. I fought this batter the first 2 years and ended up paying for my on PET. I don’t have the money this time so that’s out of the question. So many with USPC (or other uterine cancers for that fact), seem to get approved for PETs. What is your secret? I’ll ask again what Diagnostic Codes your ONCs use to get approvals. I had Aetna last year and our company changed to United Healthcare. Any suggestions or information to get an approval for at least one PET would be greatly appreciated.