son just starting treatment

[Nester]

Hi, I feel I know some of you already. Dadmo, your links are great. Don helped me get to Moffit through his link. And Mitch has responded to an email. My son had Orchiectomy on June 8.

Has non-seminoma embryonic carcinoma with some blood vessel invasion and some suspecious nodes on opposite side.

He is consulting at MSK. If all test are confirmed they will probably prescribe chemo then RPLND.

My first question is, if he needs chemo and wants to have it at home in Florida how do you go about getting it done here. I have called Moffit-thanks to Don's link and got no where. They said they too would need to see all slides, films etc. before they would administer chemo. (Sounds like a big delay)

I called Morton Plant cancer Pavillion-which is connected with Moffit but closer to home and left a message and have gotten no reply.
I don't want him to have to delay treatment while everything is checked again since Sloan has already checked and repeated everything from the first hospital where he had Orchiectomy.

Also, anyone who had chemo here in Florida in the last 2 years? what do they do if a hurricane threatens? Do they hospitalize you so treatments can continue?

Thanks for any help.

[dadmo]

Nester:
Try contacting your local hospital. Chemo is a simple drip, just like a transfusion, and can be done very close to home. My son had his treatment done in NJ with Sloan giving direction.

[Nester]

Ok, I did that and they all said he had to be refered by a local oncologist who would decide if he needed it. That'lldely at least a week with the holiday coming.

Another question. I can't understand why MKS has them have both the chemo and surgery. I asked Dr Motzer why not have the surgery and then if it came back do chemo. He said because the might not get it all with surgery.

But if Chemo cures it and it is the same chemo, why not see if the chemo works. Or vice versa-do chemo and then why do you need the surgery. I wonder if it isn't over kill. You do a lot of research and I thought you might be able to explain it in laymens terms to me. Thanks

[Nester]

Sorry, that's typed very poorly. Hope you understood what I meant.

[dadmo]

Nester:
The standard treatment is 1) remove the primary tumor, which means the testicle must go. 2) If the cancer has spread beyond the testicle, usually the lymph nodes and/or lungs, chemo will bea administered. 3) If after chemo the lymph nodes are still enlarged the doctors at Sloan will want the nodes removed.
I wouldn't worry about a delay my son didn't start chemo for almost 6 weeks after the testicle was removed. That should give you plenty of time for the transfer of information between one facility and the other. It's fairly standard for one facility to review the slides provided by another and then do there own slides anyway.

[Mom]

It depends upon the make up of the tumor, whether there is LI or VI and the CT scan results. My son had both embryonal and teratoma components with lymphatic invasion. He had one enlarged lymph node that showed up on an MRI but not large enough to show on a CT scan. His markers were not high but they did not go down after the I/O so he banked sperm and then went right to chemo (3xBEP). His markers went to normal during during his second round. He did not need a RPLND even though he had teratoma present in his tumor. There are others who contribute to the forum that had chemo only. If there are no residual masses after chemo then there is no reason to have a RPLND. My son's doctors felt that if they did the RPLND first they would find live cancer and he would still need chemo, by doing chemo first (and they really wanted to get it started) he might not need the RPLND. Also, with EC, it could turn up any place, skip the retroperitonial lymph nodes and go right to the lungs. I believe the surveillance protocol after chemo with no RPLND is a little more intense (CT scans, doctor's visits, markers, etc.). In your son's case it appears that he has some lymph node involvement with vascular invasion. If those lymph nodes still remain enlarged after chemo they will want to find out what is in them which more than likely will be dead (necrotic) tissue. My son is 17 months post chemo and I am fairly confident that he is cured, but the other night at dinner he said that his back was hurting to the extent that he had to rig something up to sleep. My heart nearly sank but I kept my mouth shut. Yesterday, I sent him an email and asked about his back and he said it was much, much better. So the bottom line is no matter what kind of treatment they have you never stop worrying. You are going to have to take this one step at a time and if you are still concerned with the treatment plan, get a second opinion. You are asking all of the right questions. Dianne

[Chris'Mom]

My son had his orchiectomy in March and did start chemo fairly quickly after sperm banking. Chris was treated at Sloan Kettering, but did chemo five minutes from home and everything went great. He did have RPLND surgery for teratoma left over in the nodes....keep us posted....Chris is now doing great.Mary Ellen

[Nester]

Thanks everyone! I had a better morning and lined up an oncologist here who will take him right in who did a fellowship at MSK-so if needed I'm ready. I feel better now.

We find out tomorrow.

[dadmo]

Please keep us updated.

[Nester]

Thanks for all your comments. We saw Dr. Shienfeld yesterday. MsK had repeated all tests and their cat scan was negative and blood markers were normal so they have decided to do the RPLND first and hopefully no chemo.

I sure hope this works! I sure prefer it to the chemo. Surgery will be in July.

[Don]

If you tell them your son's situation you will see you with-in 2 weeks generally..in that time you can get your slides and films.. Dr. Pow-Sang At Moffitt has done more RPLND surgeries then most surgeons and is worth the wait unless you are going to have Sheinfeld or I/U do it... Get in touch with the Genitournary Oncology Dept at Moffitt and they will generally take you right in.... They saved my Life when no one else could and I would really recommend that you consult with them... My local Oncologist did his fellowship at Indiana and the Surgeon did his fellowship at MSK.. between the 2 of them they nearly killed me... Food for thought about fellowships....... Best of luck Nester and if I can share any advice or info I surely will.....

[Don]

Didn't see the above post..You went to MSK???

[toomoody]

Hi Mom! (I am Nester's son. Funny to find my mom's posts on this board when I have been frequenting it for several weeks now.)

To answer your question Don, we are going to MSK. I'm in NY for the summer, which is convenient (as convenient as cancer can be). RPLND by Dr. Shienfeld in one week.