new member.. pT2

[markovitz]

Hello guys,

I am 32yo, unfortunately I am diagnosed with TC on my right testicle.
This forum means a lot for me, I can compare my results with others and understand things, so Thank You !

here is a bit of my history:

29/03/2017 - eco, diagnosed with solid tumor on right testicle.
30/03/2017 - blood markers are normal
03/04/2017 - MRI confirms tumor, shows no other metastasis or lymph node invasions
19/04/2017 - orchiectomy
08/05/2017 - results: embryonal carcinoma with vascular/lymph invasion in small vessels.
(ICD-O 9070/3) + few seminomas cells (ICD-O 9064/2).
no invasion of the spermatic cord.
size of the tumor: 0.7/0.7/0.6 cm
pT2


19/05/2017 - new blood test, CT on abdomen/pelvis + pulmonary
- waiting for results...

My concerns right now, are .. will I be on surveillance or will I take the chemo. (hopefully if CT is clear). How would that affect my. How would that affect my fertility (I have no kids, and this is very important for me).

If I will have to take the chemo (with a clear CT), what will that be? 1 cycle.. 2 cycles.. ? My oncologist says that probably we will have to do it. But I also have a friend with same tumor and same invasion and he is on surveillance. You can see here that I'm "programmed" to stay positive, so I'm not thinking right now that CT may look bad.

Here on this forum I saw you guys talking about dr. Einhorn Lawrence. Can I write him an email? or maybe only my doctor? I would like to make sure that if I will take chemo, to take the smallest dose possible... And maybe his advice. I know, I feel so small, I know that there are more complicated cases than mine.

Also, does it matter if the vascular/lymph invasion is in SMALL vessels ? Could this be correlated with a lower grade of recurrence?

...
If CT look bad.. I know there is no other way than chemo. I would only want to mitigate the effects/dose.


Thank you very much,

[RJKD]

Sorry to welcome you Markovitz. It sounds like you are stage 1b non-seminoma if your CT scan is clear and your markers are normal. The cancer cells in your lymph/vasculature makes you stage 1 "b". That certainly increases your relapse rate. You will have about 50% chance of relapse. Then you will have 3 choices.
1) Surveillance
2) 1 x BEP
3) RPLND - however, if you are in Europe this is likely not an option with the exception of Italy

Surveillance is a completely viable option at that point and Einhorn's first choice.

[Trekga]

MARKOVITZ: Sorry you are here. The waiting can be tough. You will need the CT Scan and repeat markers to know what tx you might need. Sometimes with vascular invasion the CT Scan may be normal early on, but it looks as though you had MRI 1st which I'm not familiar with for TC. Keep us updated.

[marcopolo]

Hi and sorry to welcome you here. I had EC 100% vith LVI+ and choose surveillance. I am from Europe and I wrote to Einhorn if I can go with surveillance - he answered - yes. Thanks god still OK for 2 years (5/2015 had an I/O and CT scan was clear after I/O).

[markovitz]

Hi and sorry to welcome you here. I had EC 100% vith LVI+ and choose surveillance. I am from Europe and I wrote to Einhorn if I can go with surveillance - he answered - yes. Thanks god still OK for 2 years (5/2015 had an I/O and CT scan was clear after I/O).

I can see from your description that you had increased nodes? Didn't they recommended therapy ?
I'm kinda stressed right now, I will get my CT results în a few hours.

[markovitz]

Hello,

just arrived from my doctor: CT is clear, blood markers are ok.

so apparently this leaves me with 3 options:
1) RPLND with 20-30% chances of recurrence (but I'm in europe)
2) 1xBEP or 2xBEP with <5% chances of recurrence
3) surveillance with 50% chances or recurrence

What do you think? Obviously I am afraid of chemo. I would chose surveillance. My doctor told me to think about it for a week, and she hopes that I will make the smarter choice: (chemo).

[RJKD]

Surveillance is a perfectly viable option here. Most institutions prefer this.

On the other hand, I work at the James Cancer Hospital here in Columbus, OH. Their tradition has always been to do surveillance in this instance. I spoke to my oncologist who has told me that he is now leaning towards doing 1 x BEP in this situation given the great results from this and how Europe leans this way.

Personally, I would do RPLND, but that's because I hate chemo with a passion.

[TC Mom]

Personally, I would do RPLND, but that's because I hate chemo with a passion.

How bad was chemo RJKD? What were your side effects/adverse events?

In looking at markovitz's options I would be inclined to go with chemo for the better outcomes for my son, but RJKD's statement has me wondering just how bad the chemo is - that he would be willing to undergo surgery and accept a great chance of recurrence. The chemo regiments my lymphoma patients undergo must not be as bad as BEP.

[RJKD]

For me it was the mental side of things from chemo that affected me. Chemo affects everybody differently. For some reason, it knocked me out mentally for quite some time. If an RPLND can help avoid chemo, I would do that. However, the RPLND is not nearly as efficacious as 1 x BEP so I can understand why 1 x BEP is a recommendation. But, I do see many patients terrified of the RPLND. With a good experienced surgeon, I would not be concerned about the RPLND surgery, primarily a surgery done before chemo.

I do sometimes think, if I had a son and my son were going through this, what would I recommend? And the answer is easy for me. An RPLND with a very good surgeon.

[marcopolo]

I can see from your description that you had increased nodes? Didn't they recommended therapy ?
I'm kinda stressed right now, I will get my CT results în a few hours.

Hi, I have to update my profile (sorry). Yes, my node were increased and later decreased and still continue.... I haven't had any treatment - only surveillance, blood test, CT scans according the guidelines.

[markovitz]

RJKD: how come you choosed 1xBEP ?

[RJKD]

RJKD: how come you choosed 1xBEP ?

I didn't consider surveillance as I had a 50% chance of relapse. I knew how hard 3 x BEP would be if I relapsed and I wanted to try to avoid it. So the choice became between 1 x BEP and RPLND. Overall, I knew that the 1 x BEP would take care of the EC better than an RPLND. However, I underestimated how tough the 1 cycle would be for me.

[markovitz]

I didn't consider surveillance as I had a 50% chance of relapse. I knew how hard 3 x BEP would be if I relapsed and I wanted to try to avoid it. So the choice became between 1 x BEP and RPLND. Overall, I knew that the 1 x BEP would take care of the EC better than an RPLND. However, I underestimated how tough the 1 cycle would be for me.

Do you experience any permanent damage from 1xBEP ? Any pulmonary deficiency, neuropathy , fertility issues ... ?

[TC Mom]

However, I underestimated how tough the 1 cycle would be for me.

I'm sorry to hear it was so rough. I appreciate you taking the time to share your experience with me. I do realize every responds differently. It's certainly given me more to think on. I think we are leaning towards what ever gives him the best prognosis and least probability of relapse, ultimately, but will weigh things carefully.

[RJKD]

Prognosis from TC is the same regardless of the route. The problem with 1 x BEP, is we do not know what the long-term implications of it are. Any doctor that says they do is not being honest.

My problem with 1 x BEP is NOT with if someone gets through it. This is not how I look at it. Almost everyone will ultimately get through it fine. I'm looking at it from a physician perspective (I work as a doctor) and long-term health. There are too many unknowns with 1 x BEP for me to recommend it over RPLND. So that's is why RPLND is my first choice almost always.