Timing of PET scan
Part of my concern is that if there is something else going on...i want to know about it now. The oher part is that...God-willing...they got everything..and i have no mets to worry about...my medical expenses right now are 100% covered for the rest of the year...January 1 starts the clock over again...and with a $3,000.00 deductible...i would have to pay all of that right in the beginning of the year next year.
Alex
Comments
-
Alex
With only lymph node involvement you should be a stage 3. I had surgery June 19th to remove rectal tumor, gallbladder and liver tumor. I am stage 4. My onc is doing CT scans every 3 months, which will be late September and late December. CT scans are the best test versus pet that can give false positives especially after surgery. I know what you mean about deductible, if you run into January you have to start paying all over, and it's right after Christmas. I am doing 12 rounds of Folfox and if I stay right on target of every 2 weeks I should finish dec 18 (I already have my calendar marked off). Did your onc say you might be doing more than 12? Did you get any pre meds before your 1st infusion? Good luck with onc visit and blood work. Yesterday my port wouldn't draw and I had to be stuck again, uggh.
Sandy0 -
Alex -
Re:
".........colon resection 6/15....chemo 7/23......when will i have a PET scan? ....."
After my surgery in 2006, and my surgery in 2011, both surgeons said
they did not like PET scans for the purpose of "treasure hunting" (as one
surgeon put it). CT scans work well and do not expose your body
to the radiation from the radioactive glucose that the PET uses.
Normal cells uptake glucose at a fast rate when they are in the
healing process, and all too often they are mistaken for cancer cells.
How many normal cells are trying to repair themselves after surgery?
How many normal cells are trying to repair themselves after being bombarded
with radiation therapy?
And all of the toxic chemicals that are used for chemical (chemo)
therapy injure good cells as well as bad; every one of those chemicals
are carcinogenic! How many "normal" cells are attempting to repair
themselves after chemo, and uptaking more glucose than they normally do?
The PET has it's place, and was designed for the surgeon to help
locate the parameters of a tumor. Using that type of scan as some
sort of fishing expedition is a disgrace.
Re:
"My cancer had mets to 4 nodes"
The accepted amount of nodes to remove for staging purposes
is 20 (or more). If 4 or less out of the twenty are holding cancer
cells, you are considered to be in much better shape than if more
than four out of twenty are holding cancer cells.
The question for the physician should be "how many nodes were
removed for diagnostics?" If it was less than twenty, the test is
considered inconclusive for purposes of staging.
Think of it this way:
Four out of twenty=safe
Four out of five=very bad
The staging can be totally wrong, when the wrong data is
being applied.
In my opinion, you should run not walk, to a different colorectal
surgeon for another opinion. Oncologists provide chemical therapy
and are not usually the most objective individuals to deal with.
Either way. seek other physicians that are not of the same group
or organization as your present ones for their opinion; go out of
town if necessary.
You will do well, if you buckle-down and become your own
advocate; do -not- be afraid to question "authority".
My best wishes for you!
John0 -
There are a lot of different
There are a lot of different opinions on this subject regarding when to scan and which is better the PET or the regular CT..
My new doc does a CT and not a PET as she believes the PET leads to lots of false positves.
In fact I am having a CT and bone scan today.. as I have been on FolFiri for 3 months.
but my old onc didn't even want to scan till 1 year from chemo start if CEA was normal..
for me the CEA is a non determinator.
So where is you CEA at may be influencing the timing as well..
Good luck ask the questions they don't want to answer and you will get to what it is you really need.0 -
Monitoring
The phase you are in is hard and in fact for many it gets harder once the chemo stops- the sense that you are actively fighting this illness helps you feel in control. When you move to the phase of simply waiting and watching with no treatment, mnay feel out of control and very anxious. Monitoring through scans is the normality but there are several hard truths about it- 1)there is no clear evidence that monitoring helps the outome in studies (doean't mean it never helps anyone but on average they don't help you catch it significant'y early enough to change the outcome)
2) there is no agreed protocol as to what monitoring should be done in each stage. It is up to you and your team's judgement as to what is right for you in your situation
3) no scans are perfect- they can detect what they can but miss a significant amount and can give false positives too
4) they help reduce the anxiety of wating to see if it returns but also increase the anxiety around the time of scans and waiting for results.
Talk you anxieties through with you team. Get your knowledge to the level that helps you understand why decisions are taken and ask questions of the team to satisfy yourself they are making the best decisions for you. It is about feeling as in control of this as you can (we are never fully in control but knowledge helps us feel a bit better about that).
No exact answers, sorry, but that is the world we now inhabit.
steve0 -
It sounds like you havent
It sounds like you havent done a ct or pet scan yet. They should have ordered a ct scan at the time of dx to be sure it wasnt stage 4.0 -
My oncologist said that heMomof2plusteentwins said:Alex
With only lymph node involvement you should be a stage 3. I had surgery June 19th to remove rectal tumor, gallbladder and liver tumor. I am stage 4. My onc is doing CT scans every 3 months, which will be late September and late December. CT scans are the best test versus pet that can give false positives especially after surgery. I know what you mean about deductible, if you run into January you have to start paying all over, and it's right after Christmas. I am doing 12 rounds of Folfox and if I stay right on target of every 2 weeks I should finish dec 18 (I already have my calendar marked off). Did your onc say you might be doing more than 12? Did you get any pre meds before your 1st infusion? Good luck with onc visit and blood work. Yesterday my port wouldn't draw and I had to be stuck again, uggh.
Sandy
My oncologist said that he could do a pet scan...but that he didn't think it was necessary right now. We talked about revisiting it in October. Right now my main concern is about the news i got today ...came home and looked it up... signet ring adenocarcinoma (sp?). Now I'm scared...not only is it rare but it is also supposedly fairly resistant to chemotherapy. I really like my doctor...but now i am concerned about the attitude that they think that they got it all in surgery and chemo is just to get any lingering cells that may have gotten away. Oh...and he said that i am a IIIb.
Alex0 -
My very first test was a CTjanderson1964 said:It sounds like you havent
It sounds like you havent done a ct or pet scan yet. They should have ordered a ct scan at the time of dx to be sure it wasnt stage 4.
My very first test was a CT scan in the ER. I had been having diarrea and abdominal pain...they found the mass and referred me for a coloniscopy. I did question the oncologist today and he said i was a IIIb. I still have this sinking feeling thjat it is more. I only had 18 nodes removed....4 of which were involved. But now my real concern is in learning that this cancer is not the usual colon cancer...it is signet ring cell.
Alex0 -
John...they only removed 18John23 said:Alex -
Re:
".........colon resection 6/15....chemo 7/23......when will i have a PET scan? ....."
After my surgery in 2006, and my surgery in 2011, both surgeons said
they did not like PET scans for the purpose of "treasure hunting" (as one
surgeon put it). CT scans work well and do not expose your body
to the radiation from the radioactive glucose that the PET uses.
Normal cells uptake glucose at a fast rate when they are in the
healing process, and all too often they are mistaken for cancer cells.
How many normal cells are trying to repair themselves after surgery?
How many normal cells are trying to repair themselves after being bombarded
with radiation therapy?
And all of the toxic chemicals that are used for chemical (chemo)
therapy injure good cells as well as bad; every one of those chemicals
are carcinogenic! How many "normal" cells are attempting to repair
themselves after chemo, and uptaking more glucose than they normally do?
The PET has it's place, and was designed for the surgeon to help
locate the parameters of a tumor. Using that type of scan as some
sort of fishing expedition is a disgrace.
Re:
"My cancer had mets to 4 nodes"
The accepted amount of nodes to remove for staging purposes
is 20 (or more). If 4 or less out of the twenty are holding cancer
cells, you are considered to be in much better shape than if more
than four out of twenty are holding cancer cells.
The question for the physician should be "how many nodes were
removed for diagnostics?" If it was less than twenty, the test is
considered inconclusive for purposes of staging.
Think of it this way:
Four out of twenty=safe
Four out of five=very bad
The staging can be totally wrong, when the wrong data is
being applied.
In my opinion, you should run not walk, to a different colorectal
surgeon for another opinion. Oncologists provide chemical therapy
and are not usually the most objective individuals to deal with.
Either way. seek other physicians that are not of the same group
or organization as your present ones for their opinion; go out of
town if necessary.
You will do well, if you buckle-down and become your own
advocate; do -not- be afraid to question "authority".
My best wishes for you!
John
John...they only removed 18 nodes...4 of them were involved. I guess my concern is that i have been told that my cancer is rare... i have signet ring adenocarcinoma. I need to call my doctor in the morning and ask about the involvment of the appendix. They did remove it at the same time as the colon resection....when they did the colonoscopy before the surgery the dr said that it looked like the tumor was possibly also involving or very near the appendix. Not knowing anything about my type of cancer, i did not question any involvement of the appendix...i just assumed oh it is just the appendix ...lots of people have them removed. The surgeon had told me before the surgery that the plan was also to remove the appendix.
I think i am going to look into seeing someone at Georgetown or the National Cancer Institute. I don't know much about my specific type of cancer...this is all so new. You are right...i need to be my own advocate...and question authority. I like my oncologist...i just want to be sure that we are attacking this with full ammo...i am 45 and have young children to worry about.
Alex0 -
insurance
Insurance companies don't like to pay for pet scans. The Dr has to really justify wh6theyare doing a pet scan. I know it would becgreat to get everything done now but it isn't that easy. Our insurance companies don't let us do it. Pray everything else coemes along good. Jeff0 -
Alex -Maxiecat said:My very first test was a CT
My very first test was a CT scan in the ER. I had been having diarrea and abdominal pain...they found the mass and referred me for a coloniscopy. I did question the oncologist today and he said i was a IIIb. I still have this sinking feeling thjat it is more. I only had 18 nodes removed....4 of which were involved. But now my real concern is in learning that this cancer is not the usual colon cancer...it is signet ring cell.
Alex
Although 20+ nodes are recommended, 18 should be enough
to work with. I would be really concerned if it had been less than
10 or 12! Four out of eighteen is good (I had 7 out of 27 involved).
By the way, Signet Ring Adenocarcinoma, is also commonly called
Signet Ring Cell Carcinoma. It was the diagnosis of my type of
colon cancer in 2006. It was determined to be "high grade", and
at the time I was proud of that fact, since all throughout my
school years, everything I did was low grade.
Relax Alex. Take one trip at a time and one day at a time.
We all worried ourselves sick after our diagnosis, but many of us
realized that staying "cool" and calm will result in clearer thinking
and better chances of making right choices.
Sure, cancer is serious business and takes a whole big bunch of
lives each year, however many lives are lost not due to the cancer
directly, but due to the harsh toxic remedies provided....
BUT, many of us have lasted a whole lot longer than that doomsday
scenario they painted us.
Try to get a grip on things. Take your time making choices;
the choices are -yours- to make, not some physician's choice.
Listen to your inner instincts for survival; your intuition for
deciding right from wrong, and allow the gift for self-survival
to guide you through the coming years.
You can do this!
Think healthy thoughts!
John0
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