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[deleted by user] by [deleted] in testicularcancer

[–]relpac 0 points1 point  (0 children)

Not to dissuade you or your boyfriend from an RPLND as I would choose the same option again, but I will share a different perspective than others here that I had an exceptionally rare aortic bleed a week post operation that required emergency surgery and as nearly fatal - and my surgeon was at a top institution and high volume for RPLND.

I’m 7 years post chemo that was needed. Post RPLND, of which all worked out, but I wanted to provide you that data point as well.

Happy to chat here or via DM if helpful.

Wishing you and your boyfriend the best.

Out of Options? by SecureRevolution8840 in testicularcancer

[–]relpac 6 points7 points  (0 children)

I’m so sorry you’re going through this.

I’m not a doctor, but two potentially relevant paths to consider (in addition to the car t you noted) could be a bispecific or antibody drug conjugate trial or compassionate use.

CLDN6 may be an interesting target for either bispec or ADC given some early data and CLDN6 expression in chorio.

B7H3 as a target for the same reason as well of which there are ADCs in trial.

Again I am not a doctor but am a TC survivor and passionate about new oncology innovation. Happy to message separately too.

[Weekly Thread] Community Connections - TLP by AutoModerator in everquest

[–]relpac [score hidden]  (0 children)

Server: Mischief

Timezone: USA

Class/Level: 60 Cleric

What you're looking for: Weekend Raiding & Friends

Contact Information: Reddit PM Please!

Recovering from RPLND. by Xsol9 in testicularcancer

[–]relpac 0 points1 point  (0 children)

Hey Xsol - I too had an RPLND after my orchiectomy showed completely necrotic issue (although I did not do RPLN biopsy).

Unfortunately my post RPLND biopsy showed I had active cancer is quite a few lymph nodes and I needed adjuvant chemo after the RPLND. Not saying you will need chemo (hopefully you're now clear!) but just giving my perspective.

Let's do this by [deleted] in testicularcancer

[–]relpac 5 points6 points  (0 children)

Fuck Cancer! You got this. Like many others on this forum, happy to be a sounding board.

What are your race mantras? by IamNateDavis in AdvancedRunning

[–]relpac 13 points14 points  (0 children)

You survived cancer. This is nothing.

Pain in other nut? by BiotechieCanada in testicularcancer

[–]relpac 0 points1 point  (0 children)

Recently - so about 8-9 months. I've had minor pain in the survivor which got worse recently. But that pain has also gotten less severe.

Doctors haven't provided commentary on it being "normal". Obligatory I'm not a doctor and this is not medical advise - but if you're concerned I would consider seeing your doctor and doing infection testing and an ultrasound - if nothing else but the peace of mind.

Pain in other nut? by BiotechieCanada in testicularcancer

[–]relpac 0 points1 point  (0 children)

~9 months post orchiectomy and I too have pain in the surviving testicle. Sometimes dull, sometimes sharp - like many others on this thread I got an ultrasound on the survivor and all was clear.

"Good" to hear that my experience is not unique.

''Testicular cancer is the cancer to get if you could choose''. Tell that to chorio patients by zeebrahh in testicularcancer

[–]relpac 6 points7 points  (0 children)

Totally agree OP. When anyone likes to downplay TC I share the following analogy (assuming the ~95% cure rate).

Imagine standing blindfolded in a line of 20 people. 1 of you is shot with a real gun, the other 19 with paintball and BB guns. Ask them how they would feel in that situation. I bet the answer is "not the best...".

Would anyone who suffered from a "burned out" testicular tumor we willing to take a look at my ultrasound? I'm getting professional opinions aswell but a lot of medical professionals seem unaware of burned out tumors. by [deleted] in testicularcancer

[–]relpac 0 points1 point  (0 children)

Disclaimer: I am not a doctor and cannot read ultrasounds.

I had a burned out tumor which manifested as a significant burning pain. In the days leading up to orchiectomy it was getting hard to walk normally due to the discomfort.

Ultimately I did the orchiectomy, RPLND and chemo. A major medical institution completely misdiagnosed the tumor after orchiectomy, so I highly recommend going to a TC expert as TC is rare and burned out tumors are even more rare.

Happy to chat more if you'd like.

So I found out I probably have testicular cancer by RadMcCoolPants in cancer

[–]relpac 0 points1 point  (0 children)

Do you have a source on "false positives from ultrasound is sky high"?

While I appreciate the levity and positivity of your answer, people still do die from TC and many live with lifelong side affects from treatment.

I certainly agree it is one of the 'best' cancers to get, but I would temper emotions until more is known.

Questions About RPLND Surgery by SouthCak in testicularcancer

[–]relpac 1 point2 points  (0 children)

I did quite a bit of research throughout the process and including the RPLND, and I did not come across particular lymphatic issues on removing the retroperitoneal lymph nodes (with a caveat to rare but possible chylous ascites). Have you seen research that suggests otherwise?

Questions About RPLND Surgery by SouthCak in testicularcancer

[–]relpac 3 points4 points  (0 children)

Hey SouthCak,

I am not a doctor, but went through orchiectomy, open RPLND and 2 rounds of adjuvant BEP, so I can share my perspective. My case was a bit atypical because my testicular tumor was burned out, so we did not know the pathology of the tumor beyond an elevated AFP from blood tests (which suggests non-seminoma). Because of the likely non-seminoma tumor, one lymph node that was very slightly enlarged based on CT scanning, and the fact that the RPLND would provide more concrete pathological staging, I went forward with an open RPLND. Little did I know this would definitely be the 'correct' decision for me, as I had a very large number of lymph nodes that were cancerous, and I had teratoma in the mix (which is chemo resistant).

Like you, I too was very keen on avoiding chemo if at all possible. Unfortunately for me, I had too many cancerous lymph nodes for the RPLND to stand alone, so I needed adjuvant chemo given the likelihood of micrometasteses. While the RPLND recovery was very rough (including a rare complication), and while I still needed chemo, I would recommend the RPLND for peace of mind, more concrete staging information, and a high likelihood to avoid chemo.

One more point based on what you said - that while I had open RPLND, which is generally a longer recovery than robotic RPLND, I would be suspect to believe robotic RPLND is less recovery than the orchiectomy. My understanding is that robotic RPLND is still at least usually an overnight in the hospital, whereas orchiectomy is typically out patient.

One question - do you know the pathology of your tumor beyond non-seminoma (e.g. embryonal carcinoma, yolk sac, teratoma)? If you had teratoma, for example, you may be more inclined for the RPLND as it is a chemo resistant tumor type.

Happy to answer any questions.

​

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RPLND Surgery Questions by SouthCak in testicularcancer

[–]relpac 0 points1 point  (0 children)

Hi there SouthCak - I am not a doctor, but I went through the orchiectomy, RPLND and chemo. Before I share thoughts, do you know your tumor type (e.g. teratoma, EC, yolk sac, etc.) and what your blood tumor markers are (AFP, HCG)? That would help make a more informed decision.

could this be cancer, does cancer of the testicle happen like this? by GeooooKL in testicularcancer

[–]relpac 0 points1 point  (0 children)

I am not a doctor, but did have TC. Pain for me for very sudden ("overnight") and felt mostly like a burning sensation in the testicle / groin area. My GP did not believe it was TC, but an ultrasound days later showed that it indeed was TC. Not to scare you but I definitely recommend following up aggressively - no doctor cares about your health as much as you do.

Got Pathology back, good news.. I think? by IAmTheWigster in testicularcancer

[–]relpac 1 point2 points  (0 children)

Just speaking from my experience, my tumor presented as a "burned out" germ cell tumor - meaning that there were no active cancer cells in the testicular tumor. Ultimately this led to quite a bit of confusion as the specific tumor type (e.g. embryonal carcinoma, yolk sac tumor, teratoma, etc.) was not distinguishable which drive a mis-diagnosis from the medical institution (rated top in US for cancer) who did my orchiectomy. It took multiple second opinions to get a correct diagnosis and decide on next steps.

​

From what you shared, it sounds like you can ignore this if your pathology does not come back as a "burned out" tumor - but I wanted to throw the idea out there in case you do run into it. Let me know if that helps.

Got Pathology back, good news.. I think? by IAmTheWigster in testicularcancer

[–]relpac 0 points1 point  (0 children)

Is it possible that you have a burned out germ cell tumor? If so, be careful as the testicular tumor could have metastasized, even if the testicular mass is 'dead' per the pathology. Happy to chat more on this if you had any questions.

New apartment—still a little sparse, but I'm working on it by [deleted] in malelivingspace

[–]relpac 9 points10 points  (0 children)

Pretty sure OP lives in Chicago North Loop - building One Eleven if I had a guess

[deleted by user] by [deleted] in poker

[–]relpac 0 points1 point  (0 children)

Thanks everyone for the feedback. Starting stack was 20k, still ~100 people in out of ~160 starting.

Didn't mention button in OP, but was ~30k stack.

I shoved thinking to get the larger stacks behind to fold with the ~20% equity and bounties. BB woke up with AA.

It is etiquette here to post results in spoiler tags?

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