Stage IIA/IIB NSGCT treatment options

[jcs]

Hi there,

I received staging information from my urologist this last Thursday. Evidently I am right on the border between stage IIA and IIB, technically IIB due to one lymph node being slightly over 2.0cm (2.1x1.4cm) and slightly elevated beta HCG following orchiectomy. (I have not seen the blood test results personally, but I believe he said b-HCG was 10 before orchiectomy and 4 a week post-op when it should have been ~0.)

20% Seminoma
70% Embryonal carcinoma
10% Teratoma

I received a chest X-ray last week that I am hoping is negative, and I am seeing an oncologist for the first time today. My guess is that he will recommend chemo regardless of the X-ray results.

I guess my question/concern is on RPLND vs. chemo in this instance. It's my understanding that we would do chemo in hopes of reducing the lymph nodes to normal size, hopefully killing everything, and then going on a surveillance regimen. If the chemo is not effective or the lymph nodes start getting bigger again, it is probably the teratoma that has spread (small likelihood) and then it's time for RPLND. I've heard that this surgery is much more difficult post-chemo. Does anyone have experience with this?

Should I be seeking a second opinion? Talking to the experts at IU or Sloan-Kettering?

I'm woefully ignorant of chemo at this point. Is the chemo treatment likely the same in this case no matter who you talk to or where you receive treatment? It seems like there is a standard playbook.

Thanks for your advice/thoughts.

[biwi]

Yup, chemo options are 3xBEP or 4xEP for your case. Similar effectiveness. You can read up on the differences. As far as the difficulty of post-chemo RPLND, that is on the surgeon side. Recovery for you is probably about the same either way. With the embroynal content I would be hesitant to go for a primary RPLND (ie do RPLND rather than chemo for first line treatment).

If you read everything on this site: http://thetcrc.org/ you will be very in the know. Your case so far sounds quite textbook so the general recommendations and guidelines should be appropriate. I imagine your oncologist will probably be OK as long as they have a decent amount of TC experience.

[Trekga]

I would always suggest a 2nd opinion with TC that is beyond stage 1 as I have seen too many cases lately where treatment has been outside normal protocol in the U.S. In regards to post chemo RPLND definitely go with someone who is an "expert" or if you go with someone with smaller volume handling this surgery, than talk to recent patients who have undergone the procedure with that surgeon. My son had predominately EC, some yolk sac, some Choriocarninoma, & some Teratoma, and still needed post chemo RPLND last May.

[jcs]

Thank you for the replies! The good news is that the chest X-ray taken 5/11 was negative, so it's just those lymph nodes (we think).

I met with the oncologist yesterday who seemed to strongly prefer 4xEP over 3xBEP, really stressing the potential for bleomycin to tear up the lungs. Not realizing (stupidly) that I would be responsible for the decision yesterday, I'm currently scheduled to start 4xEP this coming Monday 5/21. Sounds like 5 days of treatment followed by 2 weeks off.

The oncologist recommended getting a port for chemo, which seems to make sense given the treatment frequency. Are there any opinions on port vs. no port?

I will try to get a second opinion yet this week if possible.

I've read that MSKCC prefers 4xEP while IU prefers 3xBEP, though neither seem to one or the other 100% of the time for stage II NSGCTs. Perhaps their choice depends on the tumor markers or pathology, but I haven't found any clear research on this.

It sounds like outcomes are good no matter where you get treatment as long as the standard protocol is followed. How does a patient stay informed to make sure things are staying on track?

Thank you again.

[scotty808]

If I had a redew I would have had 4×EP I had some bad reactions to the bleo and it did mess my lungs up I could not have my last 2 bleo treatments due to reduced lung function and bleo toxicity regarding the port I only got poked 2 times during the week they wrapped up my IV so I might stay clear of the port but that's just me

[spence21]

The port makes it way easier. If u use a pic line or iv in the arm it won’t last as long and it tears up the smaller veins. My first round was administrated through a peripheal IV through my forearm. I could tell it did some damage the next week. My veins were hardened. My worry with the port was clotting issues which are rare but I happened to encounter them which cut me short on my 4xEP. Most will tell u that lung problems are seen in a small % of patients who receive 3xBEP. 4xEP is longer which is something to take into consideration as well.

[Ann]

My son was 2A - 90% EC, 5% Yolk Sac. Lymph Node 2.1 -2.0 cm. Did 3XBEP. Didn't want a port and after the first week of BEP went with the port and very happy that he did so. He did encounter some blood clot issues - meds helped with that - and if he listened to the doctors may not have had as much trouble as he did with clots. Chemo shrunk the node to .6 X .4 told cancer free 3/15/18 and he is on surveillance. Blood test every 2 months and Scan every 6. JCS wishing you the best and keep asking questions on this site, so many great people willing to help

[jcs]

Thank you for the replies!

I saw another oncologist today who happens to somewhat specialize in these sort of cancers, and I have decided to switch courses based on his recommendation and commence 3xBEP 6/4/18 (a little more than 5 weeks post-orchiectomy).

Some of my thoughts with respect to switching:
1. It was clear to me that this oncologist was more experienced with TC specifically. He made multiple references to Dr. Einhorn and gave examples of a few cases where he had referred patients to more experienced centers
2. We discussed the potential for RPLND post-chemo, and though we both hope it will be unnecessary, he said up-front that he would recommend a high-volume center like UI or MSKCC
3. He thinks the risk from Bleomycin is minimal given my (relatively) young age of 32. We will be getting a pulmonary function test prior to treatment and will get another test done if I start having issues and will adjust course accordingly.
4. I guess I would rather do 3 rounds of chemo vs. 4 if the outcomes are the same. Fingers crossed that it's the right choice. Perhaps one less round of chemo will make the RPLND easier if it's necessary down the road...
5. He didn't seem to think the port was necessary, but we'll see how it goes.
6. The other oncologist wanted to start chemo this coming Monday, which is only a little over 3 weeks post-orchiectomy. He did not take a look at my incision (it is not quite healed), and I think it is more typical to wait a bit longer.

All in all I think this is the best course of action I can take at this time. Thanks again for your thoughts and advice. Wish me luck!

[jcs]

Two questions I forgot to ask:

1. Is it unusual to have bleomycin on days 2, 9 and 16 vs. 1, 8 and 17? Does it matter?
2. Sounds like the days of getting EP will be quite long due to fluids via IV... any tips for passing the time?

[Davepet]

First, 3xBEP is *slightly* more effective than 4xEP, and very few guys experience serious lung problems from 3XBEP. I had it at age 55 & while I had shortness of breath during treatment, it resolved within a month or so once I was done.

Second, get the port. It makes life much easier. I say this even though I had a clot at the end of my catheter that required warfarin. I really feel it made my chemo journey much easier.

I was close to 6 weeks post I/O before starting chemo, but that had more to do with appointment availability, testing etc, no reason to wait that long, but no harm in doing so.

To answer question 1: Bleo should be *either* every Monday or every Tuesday of all 9 weeks of chemo. Some docs prefer Monday & some Tuesday, no difference in effectiveness, but you need 9 doses to complete treatment.

Q2: Yes I refer to it as the "long week" when you get EP on 4 days & BEP one day. I read books (lots of them) so I could put them down, nap, & easily pick up where I left off ( or even backtrack sometimes). Some prefer movies on a PC or video games. Whatever works best for you.You should bring something to help make the time pass, otherwise it's 6-8 hours of boring.

Dave

[jcs]

Thanks Dave. I will ask the Dr. again about getting the port. Traditionally one arm has been better than the other in terms of getting blood drawn, etc., and I have a suspicion that I experience some anxiety-driven vasoconstriction.

I just received a call that the Dr. does not want to wait until 6/4 and would rather start during the holiday week of Memorial Day. I was given the choice of starting on Monday 5/28 or Tuesday 5/29. I would have to be admitted to the hospital for one treatment day either way due to the holiday/Saturday. I was assured that starting on a Tuesday would have no bearing on the outcome since it is not a delay (if anything, it is a very slightly increased schedule since the 2nd round would then be on a Monday), but I hate to screw with a proven recipe. Has anyone had experience with this? Thoughts? It's silly, but my only reason for perhaps choosing Tuesday vs. Monday is a trip we had planned to visit my wife's Grandmother, returning Monday.

[Trekga]

I highly recommend a port. When you start is no big deal, my son was inpatient anyway for his 5day, and he started his chemo on a Friday since both his HCG & AFP were continuing to rise 5 weeks post Orchiectomy. The days should NOT matter again- you might need to be admitted if clinic itself is closed, it the number of days per cycle so you would need to start next round on day_ regardless of the day of the week.

[jcs]

Quick update: I had an appointment with my oncologist today to just go over the plan for starting BEPx3 next week. However, he reported a surprising result that my b-hCG from 5/14 was back to 0 (the only marker that was ever elevated). ~10 pre-op, surgery 4/27, ~4 six days after surgery 5/3.

I'm not sure how to interpret this result. Has anyone seen markers normalize a little slower?

Given the normal markers, we are going to wait to start chemo until 6/4 to avoid the holiday and headaches surrounding getting treatment done at the hospital.

My worry is that with normal markers, maybe it is the teratoma that's causing the lymph node enlargement.

[Mike]

It is not uncommon for the beta-hCG to normalize a bit slowly and your's didn't appear that elevated (at 10) anyway so I don't think there is much of a concern to interpret. With a node in a typical landing spot for testis cancer at 2 cm, especially if the CT was done pre-operatively, is certainly a situation where chemo is advisable and should shrink the node right up for you. Primary RPLND is also an option as you mentioned as long as you are not having any symptoms, i.e. back pain, but it sounds like you are leaning towards chemo which I think most guys do nowadays.

As far as the port, many experts try to avoid PICCs and Ports if possible as they can increase the risk of blood clots so if you have good IV access they will attempt that first. Your node is smaller than those that seem to place patients at higher risks for clots so if it were me, I would discuss the risk for clots vs. the inconvenience of IV sticks. They may even allow you to go home with the peripheral line for a few days but that can also be a pain at home, getting in the way of things. I suppose it is up to you and your anxiety of getting poked daily.

Mike

[biwi]

Purely subjective but from reading things on here (and my own experience) it is unlikely that your lymph nodes are pure teratoma. Generally it seems that first the EC travels to the lymph nodes, where then portions of it can turn into teratoma after some time. It seems like teratoma transformation is more common when the nodes reach 4-5+ CM. But this is all conjecture on my part really based on my own situation and forum posts.

Also, FWIW as an otherwise healthy 32 year old I got an IV every other day in my arm which worked out well. They only had a little trouble the last week when they had to have a more seasoned nurse place the IV's.