Rplnd

[Savin16]

Hi all,
new to the site, and I can't believe how many people have this, it's so sad, but you all are strong and obviously fighters and willing to beat this. So God bless you all a hundred times over.
My brother who is 33 was diag. last Nov. with TC. He had a Orchiectomy. On one of his followups the Dr. said the cancer spread (I don't understand the staging, sorry) it spread to his abdominal and he had a spot on his lung. He just finished 4 rounds of Chemo (5hrs a day for one week, off for 2) I know Bleo was one of the meds. Anyways, a recent CT scan showed a lymph node 2.4cm and the Dr. said he needed a RPLND. From what I read on the internet this is a serious operation, my brother refuses to have it done. I am trying to get him to at least get a second opinion from a surgeon that does this procedure. We live in Ct. and the closes place is Sloan, in NY. His oncologist says it's most likely teretoma that can develop 15-20yrs into cancer. So why is it necessary to have it done now. The Dr. didn't have an answer, except to put this chapter of his life behind him. My brother doesn't want the surgery mainly because of financial stress this whole thing has done to him. He originally didn't have insurance (he thought he was invincable) so he paid for his surgery and dr. appt.s until his savings was wiped. He now has insurance that pays for most of it, but he has also been working the whole time except for chemo week. he wants to get his finances back in order. He's single too, so going home to an empty house has got to be hard, he knows he's more than welcomed her, I have 3 kids 4 and under, he'd have to be crazy to come here. I don't know what else to do. I cry every night for him. So after my LONG story, has there been anyone out there that didn't have the RPLND regardless of Dr.'s opinion!!! Best of luck to you all

[dadmo]

Savin:
After chemo the mass left behind is almost certainly dead cancer but the only way to be sure is to remove the lymph nodes and get them checked. Forget the expense, if your brother gambles here and he still has live cancer he will have real problems. From what you said I don't think your brother would be a good candidate for close surviellance. I can see him skipping appointmenst to save money and that could cost him his life.

[Dave40306]

I can certainly understand your brother's situation and why he'd rather not have the surgery but, like dadmo said, it's needed to remove the nodes that might still have cancerous cells. There's no way to tell without the surgery. A 2.4 cm node is "suspicious".

I'm in CT and I just went through a VERY similar situation - 4 rounds of chemo followed by a potential RPLND. However, in my case, my nodes shrunk down to almost nothing after chemo and my tumor markers normalized. So, both my doc and Dr. Einhorn at Indiana University said "go with surveillance". If I had gone back to Sloan (I went there for an initial consult), they may have recommended the RPLND.

Please have your brother contact me through this website (PM me) and I'd be more than happy to talk to him or meet him. I've done a TON of research and might be able to help him out a little.

[Savin16]

Thanks for your responses, it's only been 3 days since the Dr. told him about the surgery. I tried talking to him again today to at least get a consult. He is still refusing, so maybe I will let it sink in for a couple more days, then i will get him there some how.

[Scott]

I think a second opinion is a good idea, but leaving teratoma to grow isn't an option. There are many men who have had RPLND surgery. We get through it, and life goes on.

[Kman99]

Definitely keep after your brother. Perhaps a family gang tackle would do the trick. Leaving teratoma behind isn't an option. He has 2 expert TC centers within a 2 hour drive...Sloan in NYC and Dana Farber in Boston. Sloan is a bit stricter on insurance requirements, but Dana Farber pretty much accepts all types.

Do you know who he has for insurance? If so, maybe you can call both centers for him to at least check if they accept his insurance. That might help remove the financial stress from the equation.

I'm also from CT (exit 39 off rte 8), played many baseball games, etc in Wtby and would be happy to talk/email with him. The point is, he is not in this by himself. For him not to at least get a 2nd opinion from an expert TC center, would just be foolish.

[Savin16]

Rplnd

I'm happy to report that my brother has agreed to get a second opinion. His oncologist booked him an appt. at UCONN Medical Center with an urologist. Dr. Taylor. I have to see what I can find on him, but the appt is made for next Fri.

[Scott]

That's great news! Keep us posted.

[dadmo]

Savin16:
That's great news.

[Russell's Mom]

hospitals and charity money

I am not sure of hospital practice outside of California, but I know that hospitals in general are encouraged to provide. Of course they have to treat everyone, but that means years of bills as you have mentioned. Very often hospitals will have funds available to help people in need. They are glad to use this because they can present their good deeds to higher $$ authorities. Kind of like personal donations at tax time. Just to keep the balance, hospitals are full of helpful people, aside from the $$$ people will want to try to help. Have your brother ask the admitting department about what might be available in the area of charitable funds. If they do not know, try checking with the patient accounts department. If the front line people are not aware, ask to talk with a supervisor or manager. Frequently the front line people are new and are not aware of programs such as this within a facility. The hospital that I work in never uses all the money they have set aside within the year and they are supposed to be helping out!!! One other idea would be to check with a Social Worker in the hospital. You can just walk right into the Social Services department...no appointment needed. Now these are some helpful people!!! They may know of support from other sources or even outside of the hospital. Don't be bashfull! Your brother can return the favor to the universe later on when he is feeling strong and gratefull!! Good luck, Russell's Mom, Sharon

[Savin16]

Rplnd

Thanks for your responses, I will keep you posted. Thanks Russell's mom for the info. I will look into the charity funds. As for speaking with a social worker, we did that and mainly it's going on state medicaid where a lien is put on his house, and he basically can't have a job for at least 12 months to be considered disabled, so that was out. There is some financial assistants, but the waiting list was 6 months long and it wasn't much, so he has been getting by with family and friends, some rich friends too, lucky him. He just wants to work a full week, for money reasons, but more less to feel (normal) again. This is devastating as you all know, but all of you have found the will some how, he just needs an extra push. So after this surgery that he hopefully agrees too he can get back his life.

[Savin16]

Rplnd

Hi again,
For those of you that have been to Sloan in NYC can you give me a Dr.'s name for the RPLND surgery?

[Scott]

Dr. Joel Sheinfeld is your man.

[dadmo]

Savin16:
Dr. Sheinfeld does more then 100 of these a year, he is a master at this operation just don't expect much for chit chat, he's all business.

[Savin16]

Thanks Dadmo & Scott for the name. That's the Dr. I have been reading about as well, so he sounds great. After my brothers appt. at Uconn this week, I will also schedule an appt. in NYC with that Dr.