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Hello all, I was diagnosed with pure seminoma TC through orchiectomy in August. I feel like the urologist office who is taking care of me initially was amazing. They were like attack dogs. However now it seems like I've been placed on a back burner. Little to no contact from them, no info on any kind of treatment plan and I havnt been put into any kind of contact with any kind of oncologist. Am I being unreasonable with these concerns?
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No, as soon as they find it is TC via pathology of the orchiectomy specimen you should be referred to an oncologist ASAP.6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
7/7/15: bHCG 56, AFP 42, LDH 322
7/13/15: begin 4xEP, end 9/18/15
10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
4/20/16: RPLND @ IU - teratoma only!
10/22/19: all clears up to this date!
4/8/24: stopped monitoring something like 2 years ago, still all clear! -
I thought it seemed odd. Thanks for the quick reply.Comment
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I'm guessing you were stage I or stage IA?Originally posted by DexterMcGrew View Post
The active surveillance can be managed by a urologist or an oncologist was my understanding. If (hopefully not) you ever need chemo you should consult an oncologist.
You've got CT scans, Xrays and blood tumor markers periodically, right?Age 31 - Portland, OR
01NOV16- Pain in right testicle, palpable mass
13NOV16- R I/O. Markers normal
27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
06DEC16 - CT scan clear
09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
03JAN17- Ended 1xBEP; start surveillance
18MAR17-2nd pathology report shows 90% EC , 10% seminomaComment
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I've seen a few guys in here that were managed by their uro, but seems better to have an ocologist to me. I understand there is also such a thing as a "oncology urologist".
DaveJan, 1975: Right I/O, followed by RPLND
Dec, 2009: Left I/O, followed by 3xBEPComment
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I was managed by a urologist only and even a primary care physician could manage a patient on surveillance as long as they order the correct labs, imaging, etc.
However, they should have had a conversation with you about your stage treatment options, etc. and preferably offered you consults with radiation oncology and oncology to discuss the options with them too.
Seems a bit odd to me that it is now December and they have not done any of this. Effectively, that means you are on surveillance but who even knows if that is correct if they haven't communicated with you.
Give me a call as we still haven't connected and we can sort this all out.
MikeOct. 2005 felt lump but waited over 7 months.
06.15.06 "You have Cancer"
06.26.06 Left I/O
06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
06.30.06 It's Official - Stage I Seminoma
Surveillance...
Founded the Testicular Cancer Society
6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary
For some reason I do not get notices of private messages on here so please feel free to email me directly at [email protected] if you would like to chat privately so as to avoid any delays.Comment
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I never saw an oncologist until I had a recurrence 4 years after my I/O. I prefered it that way though because my urologist seems to be more informed on TC than my current oncologist. I felt the same way about being on the back burner, I would only see my urologist every 3 or 4 months for going over CT scans and blood work. The visits were super quick but if nothing is wrong then they really don't need to see you long.Comment
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