Results from Orchiectomy but no CT Scan yet. Is staging final? Is it good news?

[lautreamont]

Hello everyone
Quick steps of what got me here and a few questions. Hope you can help me. (PS huge thanks to Mike who emailed back and forth while I was waiting to register on this forum)
- Early Jan 2017: Pain in left testicle
- Following Ultrasound found a 2.3cm (largest dimension) lump - 2/3 of testicle. Right one clear.
- Blood tests came back normal for all 3 markers (HCG<0.6 AFP=2 and LDH=197) Kidney, Liver functions all came back normal
- Orchiectomy on 02/02/2018 at Stanford (Palo Alto, CA)
- No CT Scan yet as my urologist wanted to wait for results of biopsy analysis to decide for either Pelvis/abdomen scan + Chest Xray or full pelvis/abdomen/chest CT Scan.
Today I got this note from the urologist who operated
"The testicular tumor was a pure seminoma, stage pT1a. I recommend surveillance since the prognosis is excellent with just surgical removal of the testicle. I ordered a CT of the abdomen and pelvis. Radiology will call you to schedule this or you can schedule by calling XXX. When you come for the CT, also repeat the blood work and do a chest xray. Both are ordered. We'll get some time setup to talk in office soon after those test are done.

My questions
- Can one really set a stage before the CT Scan? I thought the CT Scan looks at the lymph nodes and based on that indicates the exact stage. Or is pT1a is pre-stage?
- CT Scan is coming anyway so no risk of skipping an important step. New blood test as well. Could my markers change?
- Anything I should know about Seminoma and their treatments? If it spread, how is it treated?
- Anyone here in my area? Has anyone gone though this at Stanford? I noticed the Center of Excellence is a professor at UCSF. Anyone recommends him? (pr Carroll).

Feel free to share any info, experience or advice. My entire family is waiting for news, and I don't want to give them false hope. I am thinking of waiting for the CT Scan results before letting them know.

[lautreamont]

Here are the technical details that followed the urologist note - Seems that info is still needed from the CT Scan and Lymph nodes before getting the final stage, right?

Germ cell neoplasia in situ (GCNIS)
Seminoma
Tumor Size: 2.2cm x 2.1cm x 2.1cm
Greatest Dimension of Additional Tumor Nodule in Centimeters: Not
applicable
.
Tumor Focality: Unifocal
Tumor Extent
Tumor Extension: Evidence of primary tumor
Can be assessed
Tumor limited to testis
Accessory Findings
Lymphovascular Invasion: Not identified
MARGINS
Spermatic Cord Margin: Uninvolved by tumor
Other Margin(s): Not applicable
LYMPH NODES
Regional Lymph Nodes: No lymph nodes submitted or found
PATHOLOGIC STAGE CLASSIFICATION (pTNM, AJCC 8th Edition)
TNM Descriptors: Not applicable
.
Primary Tumor (pT): pT1a
Regional Lymph Nodes (pN): pNX
Distant Metastasis (pM):
Not applicable - pM cannot be determined from the submitted
specimen(s)
ADDITIONAL FINDINGS
Additional Pathologic Findings: Identified
Germ cell neoplasia in situ (GCNIS)

[Mike]

The pT1a is just the staging rating of the primary tumor, which at 2.3 cm is relatively small. For complete staging they also look at regional lymphnodes and distant metastasis (via the CT scan) and then factor in tumor markers. If the markers were not elevated pre-orchiectomy I think it would be unusual for them to elevate after surgery. The CT is your next vital piece of needed information.

While our friends at the TCRC http://tcrc.acor.org/experts.html list just Dr. Carroll at UCSF, I believe that Stanford is more than capable of handling testis cancer cases as they are participants in the TIGER Trial https://clinicaltrials.gov/ct2/show/study/NCT02375204 and they are also part of a trial for using RPLND surgery for early stage seminoma https://clinicaltrials.gov/ct2/show/NCT02537548

If they were not committed to treating testicular cancer they would not invest efforts to be a part of these trials, so hopefully that brings some comfort.

As far as sharing with your family, that is a tough one. I know, with my sister, I had to balance when to share as not to scare her but also fearing that if I shared too late, that she would think I was keeping it a secret. I chose to share with her prior to my orchiectomy even but each family is different.

Keep us posted.

MIke

[lautreamont]

Thanks Mike! I went ahead and told my family "so far, so good but the CT Scan is the missing piece of info". Any small news helps.
And thanks for the info on Stanford. If anyone around me (SF Bay Area) with similar experience please let me know!
One quick question. My 2.5 y/o son had a virus and it turned into pneumonia. He is getting antibiotics. If I were to catch whatever he had, could it affect the blood tests? (in particular the cancer markers?)

[Mike]

I wouldn't be worried about the infection and blood tests. Your previous markers were within normal limits and if there are some abnormalities for some reason they are easy to repeat.

Mike

[confidentcoyote]

I'm going through the same thing with Stanford (even the format of your urologist note is identical to mine). My clinical staging was completed after the CT scan results.I think there is nothing wrong with your current plan, but I find the wording of your urologist's note " I recommend surveillance" problematic because it is prone to misunderstanding -- you had to consult to an online forum to understand what it really means, after all. If your CT scan comes negative, I imagine the staging will be complete and urologist recommendation will hold.

One anecdotal comparison of USCF and Stanford: Upon receiving my ultrasound results, my primary care doctor referred my case to UCSF with an urgent priority. The day after, I called UCSF, explained my situation and they told me to wait for a call from their referral center and that there was nothing I could do before that happens. Fast forward 10 days: I had already seen a urologist at Stanford, undergone my orchiectomy, received my CT scan results, resting at home comfortably, when I received a call from UCSF to set up my first appointment with a urologist!

[biwi]

One anecdotal comparison of USCF and Stanford: Upon receiving my ultrasound results, my primary care doctor referred my case to UCSF with an urgent priority. The day after, I called UCSF, explained my situation and they told me to wait for a call from their referral center and that there was nothing I could do before that happens. Fast forward 10 days: I had already seen a urologist at Stanford, undergone my orchiectomy, received my CT scan results, resting at home comfortably, when I received a call from UCSF to set up my first appointment with a urologist!

Yeah, my experience with Indiana University was fast as well. Once I contacted them it was a flurry of activity resulting in my RPLND only 15 days after contacting them.

[lautreamont]

I agree. It was misleading but since they are following the right protocol (CT Scan etc) I know I will get the complete info soon. I am scheduled for Pelvis and Abdomen CT Scan + Chest XRay on Wed Feb14th. Another week and I should know where I stand. Out of curiosity what was your staging? Did they do a CT Scan of your chest or just X-Ray? Markers were like mine? (if you don't mind sharing).
PS Did you end up meeting with the UCSF urologist or decided to stick with Stanford all the way?

I'm going through the same thing with Stanford (even the format of your urologist note is identical to mine). My clinical staging was completed after the CT scan results.I think there is nothing wrong with your current plan, but I find the wording of your urologist's note " I recommend surveillance" problematic because it is prone to misunderstanding -- you had to consult to an online forum to understand what it really means, after all. If your CT scan comes negative, I imagine the staging will be complete and urologist recommendation will hold.

One anecdotal comparison of USCF and Stanford: Upon receiving my ultrasound results, my primary care doctor referred my case to UCSF with an urgent priority. The day after, I called UCSF, explained my situation and they told me to wait for a call from their referral center and that there was nothing I could do before that happens. Fast forward 10 days: I had already seen a urologist at Stanford, undergone my orchiectomy, received my CT scan results, resting at home comfortably, when I received a call from UCSF to set up my first appointment with a urologist!

[lautreamont]

Looking at your milestones, you had quite the journey but looks like you came out victorious! Congrats! Inspiring!
Your second opinion was from Mayo clinic. The person who did mine is from Stanford (https://profiles.stanford.edu/christian-kunder). Do you think I should get a second opinion given that he diagnosed pure seminoma? Or maybe wait until i see the CT Scan...

Yeah, my experience with Indiana University was fast as well. Once I contacted them it was a flurry of activity resulting in my RPLND only 15 days after contacting them.

[confidentcoyote]

It turned out to be IA pure seminoma (4cm tumor). I don't remember the exact marker values, but they were all negative pre- and post-op. Given the unpleasant delay of UCSF and relatively straightforward case (negative markers, clean CT, pure-seminoma -- all consistent with my age and risk factors) and the decision to go with active surveillance, I didn't feel the need to change my doctor and I'm sticking with Stanford.

My doctor, like yours, preferred to wait for the pathology report before ordering imaging and it was a pelvic-abdomen CT + chest x-ray. Going forward, I'm considering MRI scans instead of CT.

[lautreamont]

Thanks! I would have done the same. Consistent with age and risk factors.. What age range is consistent with this type? Just curious. I am 42 and a little lost between the younger folks and the over 50 ones. Risk factors?
Looks like you had the best possible results (given you had TC). How often are your MRI/CT in the future? Every 6 months?

It turned out to be IA pure seminoma (4cm tumor). I don't remember the exact marker values, but they were all negative pre- and post-op. Given the unpleasant delay of UCSF and relatively straightforward case (negative markers, clean CT, pure-seminoma -- all consistent with my age and risk factors) and the decision to go with active surveillance, I didn't feel the need to change my doctor and I'm sticking with Stanford.

My doctor, like yours, preferred to wait for the pathology report before ordering imaging and it was a pelvic-abdomen CT + chest x-ray. Going forward, I'm considering MRI scans instead of CT.

[Davepet]

What age range is consistent with this type? Just curious. I am 42 and a little lost between the younger folks and the over 50 ones. Risk factors?

Truth is, the risk is being male past puberty. Seems to be a bit more common under 40, but we've had a few cases in their 70's (& every decade in between) on this forum. I know it can be comforting to put numbers to the odds, but really the only generalization is the odds go down the older you get, but it can still happen.

Also, while I hate to be depressing, if you had TC once, your odds are a bit higher to have it again (second primary cancer), even though that is quite rare.

Dave

[BigPig82]

I waited way to long after discovering mass in left testy, months. Oct 2017 my wife got me in to see a great Urologist who quickly performed an I/O. Results came back with Non Seminoma and a referral to an Oncologist. I was told I could be cured and it was 50/50. I am 51 y/o. I was told that Chemo may not work and If I had to have a RPLND post chemo, it could complicate things. I opted for the RPLND and had it on Jan 8, 2018. While in the hospital I threw up after drinking a freaking Apple flavored Ensure and tore open some sutures on Jan 12. I was brought back into surgery to reclose with the addition of 6 Retension Sutures (look it up). Needless to say I spent a total of 10 days in the hospital. My bikini model days are definitely over LOL. I am still recovering but feel pretty good. I've lost 25 lbs. (I didnt eat for 9 days in the hospital). I Certainly could not have done it without my fantastic wife, and the fact that she is a RN made me feel that much better. I'd be amiss if I didnt mention that I was 280 lbs preop and the weight loss is welcome as I continue the trend for a healthier weight. I was told that the Semino is extremely treatable and wish you all the best. Lesson of the day: If you feel a lump, get it checked.

[biwi]

Looking at your milestones, you had quite the journey but looks like you came out victorious! Congrats! Inspiring!
Your second opinion was from Mayo clinic. The person who did mine is from Stanford (https://profiles.stanford.edu/christian-kunder). Do you think I should get a second opinion given that he diagnosed pure seminoma? Or maybe wait until i see the CT Scan...

I'd say you are in good hands so far. My original diagnosis was through a smaller local outfit, not a well regarded research institution. As well as being borderline stage 3. That is why I wanted a second opinion.

[lautreamont]

I waited way to long after discovering mass in left testy, months. Oct 2017 my wife got me in to see a great Urologist who quickly performed an I/O. Results came back with Non Seminoma and a referral to an Oncologist. I was told I could be cured and it was 50/50. I am 51 y/o. I was told that Chemo may not work and If I had to have a RPLND post chemo, it could complicate things. I opted for the RPLND and had it on Jan 8, 2018. While in the hospital I threw up after drinking a freaking Apple flavored Ensure and tore open some sutures on Jan 12. I was brought back into surgery to reclose with the addition of 6 Retension Sutures (look it up). Needless to say I spent a total of 10 days in the hospital. My bikini model days are definitely over LOL. I am still recovering but feel pretty good. I've lost 25 lbs. (I didnt eat for 9 days in the hospital). I Certainly could not have done it without my fantastic wife, and the fact that she is a RN made me feel that much better. I'd be amiss if I didnt mention that I was 280 lbs preop and the weight loss is welcome as I continue the trend for a healthier weight. I was told that the Semino is extremely treatable and wish you all the best. Lesson of the day: If you feel a lump, get it checked.

Love your spirits! Keep on fighting! :-)