Did I relapse? confused Help!

[JeskiM69]

CYA is an abbreviation for "Cover Your Ass".

Basically the doctors are trying to protect themselves from any sort of trouble (lawsuits, etc) caused by them making a mistake.

Think of it as warning labels that you see on everything. For example a jar of acid usually warns against drinking it. The manufacturer puts that label on the jar as a CYA effort.

Yes, Doctors are really good at CYA practices. I can understand why they are, and they should be, but it can be annoying and gets in the way sometimes....especially when you are an educated patient.

- Matt

[mauroeg7]

CYA is an abbreviation for "Cover Your Ass".

Basically the doctors are trying to protect themselves from any sort of trouble (lawsuits, etc) caused by them making a mistake.

Think of it as warning labels that you see on everything. For example a jar of acid usually warns against drinking it. The manufacturer puts that label on the jar as a CYA effort.

Yes, Doctors are really good at CYA practices. I can understand why they are, and they should be, but it can be annoying and gets in the way sometimes....especially when you are an educated patient.

- Matt

So my oncologist is asking for a Biopsy an extra radiation of PETCT when I had a fresh CT-Scan as a CYA practice. Well it makes sense but I still dont want any delay to start treatment. My doc might not let me start chemo until I bring to his desk both the Biopsy report and PETCT. I ve heard a PETCT could be more useful after treatment to see if chemo worked out.

I dont think Im really an educated patient oncologists study for years, but those little things I know I have learned it from folks in this forum which are actually very eductaed TC survivors

[wielandk]

CYA is an abbreviation for "Cover Your Ass".

Basically the doctors are trying to protect themselves from any sort of trouble (lawsuits, etc) caused by them making a mistake.

Think of it as warning labels that you see on everything. For example a jar of acid usually warns against drinking it. The manufacturer puts that label on the jar as a CYA effort.

Yes, Doctors are really good at CYA practices. I can understand why they are, and they should be, but it can be annoying and gets in the way sometimes....especially when you are an educated patient.

- Matt

mauroeg7- Matt captured the essence of it perfectly (although I was going to send you a PM!) I know it's hard and as well there may be cultural differences depending on where you live of which we are not knowledgeable. Keep up the good fight!

Kat, Mom of Jacks

[mauroeg7]

mauroeg7- Matt captured the essence of it perfectly (although I was going to send you a PM!) I know it's hard and as well there may be cultural differences depending on where you live of which we are not knowledgeable. Keep up the good fight!

Kat, Mom of Jacks

Thank you Im from Colombia in South America, and I just recieved a call from radiology, they want to be there tomorrow at 07:30Am to do the PETCT which I still doubt doing. Not sure if this PETCT is really necessary, and they might want another PETCT in about three months when I finish Chemo. This sounds like excessive radiation to me I just had a Ct-Scan two weeks back.
Thank you everyone for your comments.
.

[Davepet]

We are cancer patients, mauroeg7. It is surprising we all don't glow it the dark from all the scans we get. It is best not to be concerned & just get the scans they recommend. The risk of problems is really quite low, & the risk of death from an undiscovered problem is higher. Just do it.

Dave

[mauroeg7]

We are cancer patients, mauroeg7. It is surprising we all don't glow it the dark from all the scans we get. It is best not to be concerned & just get the scans they recommend. The risk of problems is really quite low, & the risk of death from an undiscovered problem is higher. Just do it.

Dave

I think Im getting the PETCT next tuesday. Also, I already have the chemo order from my Oncologist. I decided 3XBEP based on Dr. Einhorn even when Onclogist was into 4 EP.

I think Chemo will begin Monday 17 of September since its currenlty being reviewed by my insurance and I have some cold now.

Port will possibly be installed on wednesday

I already canceled the appointment of the biopsy taking place today because of the cold too, not sure if I will reschedule it or not

[mauroeg7]

This is Dr Einhorn answer regarding doing a PETCT now or after treatment
--------------------------------------------------------------------------------
Einhorn, Lawrence <[email protected]>

Mon 9/10/2018 6:52 PM

To: DIEGO MAURICIO ESCOBAR ([email protected])


No value for PET-CT. Post BEP x 3 doubt you would need a PET scan, just a CT scan of abdomen.

-----------------------------------------------------------------------------------------------------------

I think I will start 3XBEP next monday September 24. I was williing to start 3XBEP treatment today but I got an urinary infection. and had to be inpatient for a few days because of this.

The other thing is that Port Surgeon does not want to install the port now due to the urinary infection. He said that I should start chemo without it via IV and after first round he might install the port. Which actually bothers me not getting the port this week before I start 3XBEP considereing symptoms are gone and I feel fine to get the Port now

[biwi]

You should be OK. I went through 4xEP with a new IV every day or every other day (sometimes they can be kept overnight) and with skilled nurses it was not a problem. Only in the last week did they miss a couple times.

[Harxxony]

So, idea for biopsy and PET-CT is abandoned...?

[mauroeg7]

So, idea for biopsy and PET-CT is abandoned...?

Well I have a nephrostomy in my right kidney and I got some urinary infection because of this. So Biopsy appointment as well as PETCT were not done.I still feel like doing the PETCT. They call from radiology and recommended that PETCT should be before chemo to avoid false positives, thats what they said. So since chemo will possibly start next monday 24 Im thinking of doing the PETCT tomorrow if there is availability. Or might have the PETCT throughout 3XBEP, biopsy appoinment was missed and I have not called back to reschedule.

The thing is that I think my Oncologist will be upset about not bringing both Biopsy and PETCT to his desk on the next October 4 appointment.
Dr Einhorn replied about the Biopsy:

That is CRAZY. There is zero chance this is anything else. Would recommend proceeding with BEP x 3. EP x 4 should have about the same very high cure rate but we prefer not to subject patients to a 4^th five day course of cisplatin unless they are over age 50, as in that setting we avoid bleomycin.

[Harxxony]

I'm certainly NO EXPERT, but biopsy also sound very crazy to me even before dr. Einhorn reply. I'm sure that biopsy of some small node deep inside the body is very hard to perform. Nodes are not glued to something, they move when pressed, so it must be very hard to enter the node with fat needle and take a tissue sample. It is also strange, in my opinion, requiring both biopsy and PET CT, what is the point of PET CT detecting cancerous mass when there is a sample of biopsed mass that can be directly evaluated?

[mauroeg7]

I'm certainly NO EXPERT, but biopsy also sound very crazy to me even before dr. Einhorn reply. I'm sure that biopsy of some small node deep inside the body is very hard to perform. Nodes are not glued to something, they move when pressed, so it must be very hard to enter the node with fat needle and take a tissue sample. It is also strange, in my opinion, requiring both biopsy and PET CT, what is the point of PET CT detecting cancerous mass when there is a sample of biopsed mass that can be directly evaluated?

Im no expert either, but there are very educated men in the forum. I thought that previous CT-Scan and MRI would be enough for the Oncologist to get me into treatment. The thing that makes me concerned is not bringing to my oncologist desk neither the PETCT nor the Biopsy next October 4. What if the oncologist gets upset and no longer wants to be my Doc.?
And seems that PETCT should be perfomed before chemo as per radiology dept.
did anybody get PETCT during chemo treatment?

[Harxxony]

Im no expert either, but there are very educated men in the forum. I thought that previous CT-Scan and MRI would be enough for the Oncologist to get me into treatment. The thing that makes me concerned is not bringing to my oncologist desk neither the PETCT nor the Biopsy next October 4. What if the oncologist gets upset and no longer wants to be my Doc.?
And seems that PETCT should be perfomed before chemo as per radiology dept.
did anybody get PETCT during chemo treatment?

Well, I must emphasize that I'm no expert because I wouldn't want anyone to make any decision based on my advice or something I wrote. Also I'm fresh TC pacient too and have no experience in treatment, just trying to be comforting to my TC brothers. As I deduced, and it is only my humble opinion, your oncologist isn't quite experienced in TC. PET CT and biopsy sound to me like someone is trying to figure out why this node is enlarged, is it metastatic or is it something else, and what kind of cancer is it. This would be reasonable thinking in the case you are feeling bad, and no one knows why. PET CT and biopsy are diagnostic tools for searching the cause. But you allready have diagnosis, so what is the point of additional searching when it is a time for treatment? Medicine is standardized science, procedures in the case of TC are well documented and written and should be followed. What I don't understand, what is the purpose of PET CT and biopsy if you are allready scheduled for chemo? If someone put you on chemo for TC then he is sure that this is TC, why ordering additional diagnostic tools? Who ordered chemo, same oncologist that ordered biopsy and PET CT?

[mauroeg7]

Well, I must emphasize that I'm no expert because I wouldn't want anyone to make any decision based on my advice or something I wrote. Also I'm fresh TC pacient too and have no experience in treatment, just trying to be comforting to my TC brothers. As I deduced, and it is only my humble opinion, your oncologist isn't quite experienced in TC. PET CT and biopsy sound to me like someone is trying to figure out why this node is enlarged, is it metastatic or is it something else, and what kind of cancer is it. This would be reasonable thinking in the case you are feeling bad, and no one knows why. PET CT and biopsy are diagnostic tools for searching the cause. But you allready have diagnosis, so what is the point of additional searching when it is a time for treatment? Medicine is standardized science, procedures in the case of TC are well documented and written and should be followed. What I don't understand, what is the purpose of PET CT and biopsy if you are allready scheduled for chemo? If someone put you on chemo for TC then he is sure that this is TC, why ordering additional diagnostic tools? Who ordered chemo, same oncologist that ordered biopsy and PET CT?

Well Bro you sound like an educated TC Patient. To answer your question it was the same Oncologist who ordered the chemo the one who ordered the Biopsy and PETCT too. So this oncologist gave a treatment plan like listed below. He said get the labs because with it I can give you the chemo order. But what he actually wanted me to do was to get mainly the Biopsy and PETCT before treatment. However the Oncologist left town for some conferences, so I havent seen him ever since. So it was the oncologist nurse who gave the Chemo and medicines order and said como see the Dr. on october 4 to check on your progress of the first chemo cycle. So I think the Oncologist will be expecting both Biopsy and PECTCT results and might be upset I havent done them and started chemo without them

Treatment Plan given by Oncologist

1. Percutaneous core type biopsy directed by CT-Scan of retroperitoneal nodes lesions compatible with primary Seminoma
2. Classification PETCT due to possible metastatic seminoma
3. Blood tests, WBC, RBC, tumor markers AFP LDH and BHCG, liver blood tests and Creatinine
4. Installation of chemotherapy Port catheter (Which the Surgeon is not willing to install yet since Im currenlty on antibiotics and until urinary infection isnt there)
5. EP or BEP scheme proposal number of cycles depending on the definitive pathology of the biopsy (What oncologist said is that the purpose of the Biopsy was to discard another kind of TC cells on the nodes like embryonal carcinoma or choriocarcinoma, or any other kind of cancer in the enlarged caval Lymph nodes)

So this is what he wanted me to do, he is a prestigious Oncologist in this country but even when he showed me one TC Case he treated with BEP, Im not sure how many TC Patients he has treated throughout his career. While there are excellent and special facilities for treating any cancer here, but for what I have seen there is not one that is of excellence and experienced in treating testicular cancer like for instance Indiana University in USA. This oncologist was more into 4EP if the Biopsy of the nodes came the same as the I/O path report with Seminoma, and he said that if the Biopsy of the nodes came with some chorio or embryonal carcinoma cells, then he would order 4XBEP. But since Dr Einhorn and here recommended 3XBEP and I havent done the Biopsy, I already contradicted my Oncologist and chose 3XBEP

[Davepet]

I'm starting to think that the very best thing that could happen would be for your onc to get upset &amp; fire you as a patient. He doesn't know what he is doing & is totally ignoring the very well documented standard of care that has been established for decades now. He has already caused delay in your treatment with absolutely no justifiable reason. None of the tests he wants changes ANYTHING regarding your treatment you need 3xBEP & you need it last week. The best TC doc in the world says so. I would dump your doc & find someone that knows what needs to happen next.

Dave