33 year old son just diagnosed

[huckchef]

best of luck with everything. my thoughts and prayers are with you all daily!!

[Chris'Mom]

Hi Dianne, I just caught your posts after being down South for awhile....my son had his RPLND done by Dr. Joel Sheinfeld, and if needed, everything went great and he is the best!!!!! My son had to have chemo, his markers did not go down ...so hopefully, your son can do surveillance....keep in touch and hang in there...........Mary Ellen

[DianeE]

Hi Huckchef,

Thanks for your thoughts and prayers! We'll take we can get.
And I bet you can't wait for August!! Do you have a name chosen?
What a wonderful part of your story!! My son has two
boys, 3 yrs old and 6 months. I LOVE being a grandmother
as much as I love being a wife, mother and mother in law.

Diane

[DianeE]

Hi Mary Ellen,

Thanks so much for posting. It is so comforting to be in
the wonderful company of you and the others who are
part of this "family."

I feel so relieved that my son's markers dropped after the
testicle was removed and we all realize that surveillance
is an option, but I don't know if it's an option for us.
We are so eager to get as much of this behind us as possible
and the surgery seems to be the answer.

Of course the ultimate decision is my son's, and my husband and
I are just trying to support him and his wonderful wife as much
as we can. It is certainly a time to bond as a family!!

Diane

[BeachTech]

I did a LOT of research on whether to go RPLND or chemo. I choose chemo, here's why:
1.Just because a CT scan does not show other tumors doesn't mean that there is not cancer beyond the lymph nodes. The chemo goes everywhere (except the brain) so it should clean up everything.
2.There is a good possiblility that a RPLND patient will need chemo even after the RPLND.
3.The RPLND is a MAJOR surgery. There are many serious complications that can happen.

When my daughter was in the hospital, there were a lot of tough decisions I had to make. It was usually between treatment A and treatment B (usually "do nothing"). The way I usually decided was based on risk vs. benefits. Does the benefit of treatment A outway the risk. For example, my oncologist did not think I needed follow-up CTs after chemo. I feel the benefit (catching the cancer soon if it were to reoccur) outways the risk (xray dossage from the CT scan), so I am getting CT scans every three months.

From what you have told the group, I would think the option of survailence would be better than the RPLND. Whatever you decide, consult at least two experts before you make the decision.
________
COLORADO MEDICAL MARIJUANA DISPENSARIES

[MRM]

If your son can handle the uncertainty of surveillance, it's a perfectly acceptable choice. The semi-monthy CT scans are a pain, but at least that's figurative rather than the real pain post-RPLND.

If he is the type who would be very nervous every month waiting for results, then an RPLND is the way to go. It does increase the chance of cure a lot, immediately, and reduces the odds you'll ever need chemo.

It seems most urologists favor RPLNDs-- it's surgery; that's what they know-- and oncologists often favor surveillance, with chemo for a backup.

[huckchef]

yes diane we have decided on a name. Mary Abigail. we will call her Abbie! thanks for asking!!i hope your son is doing better. a strong family support system will mean alot to him as you all face the next few months. be strong and have faith and things will improve. give your son our best and let him know he is not alone! thanks for being there for him and my thoughts and prayers are with you all daily!

[DianeE]

Hi Beachtech and MRM,

Thanks so much for your input. We appreciate the wonderful
support we're getting from all of you at this site.

Huckchef, what an adorable name. You and your wife must
be in heaven with the anticipation!

Here's is the latest on my son, Brian.
We are now two weeks after his surgery to remove the
testicle and we found out today that the AFP is down to 7
and the HCG is 1. Before his I/O the AFP was 41 and the
HCG was 88. One week after the I/O the AFP was 13 and
the HCG was 2. We're thrilled that these markers have
gone down like this.

Brian saw a wonderful oncologist today, (my husband and I were
with Brian and his wife) and to my surprise, the oncologist
agreed with the urologist and said Brian should have the
RPLND. I was expecting him to suggest surveillance, but he said
in a young and healthy male like Brian, the surgery would be
the best way to a cure. He did say he would like a second
opinion on the pathology report and that will be done when
we go to the surgeon for a consultation on May 8.

After much discussion, and in view of the teratoma
that was removed with the testicle, the drama of
what step to take next has been resolved. We now
have two experts who have recommended the RPLND,
and unless the surgeon vetoes the plan, Brian will
have the surgery, as long as the AFP drops to normal,
which is expected since it is almost there now.

We're all feeling so much better than we were two weeks ago.

I can't believe how much we've learned about this disease
in the past two weeks, and 99% of what we've learned has
been from this site! You're all wonderful!!

Diane

[Scott]

That's a perfectly good choice. There's a lot of good advice in past posts about what to expect. Be sure to ask about the low-fat diet before and after surgery to help avoid complications.

[DianeE]

Scott, as always, you have the right advice! I meant to ask that
today, but it's probably a question for the surgeon and I'll make
sure it's part of the consultation.

Scott, this site has been a lifeline for us and I can't thank you
enough for it. Because of this site, each time the oncologist
mentioned something in clinical terms we knew what he was talking about!

I am amazed at the amount of information I have been able
to gather about this disease, in just two weeks! All because
of this wonderful forum. Thanks so much!

Maybe we'll see you in Sept.!

Diane

[dadmo]

Diane:
I know you can't help but check out all the posts on an RPLND, don't focus too much on the operation, the doctors will take care of that, your main roll will be support staff. The helpfull hints below is from several previous posts

Hosp. stay for 7-10 days, about 7 days of no food.

make sure you get all necessary supplies (blankets, pillows, toilet paper, etc.) during the day because if you need/need to replenish some of these items at night, you might be hard pressed to find them. the hospital appears to work by having floor assigned nurses (12 hour shifts changing at about 7 pm and 7 am with each nurse working 3 days on and 2 days off) handling the meds, etc, and with roving personnel handling tasks such as IV magagement (the floor nurses do not like to change IVs and if there is a problem, you might need to wait a while for a roving IV specialist to come to the floor), vital signs (blood pressure, weighing), and bed and bath supplies.

bring loose clothing to wear when you walk. The shirts should have buttons in front. Sweatshirts may cause a problem with getting them over your head.

the patient will not likely remember too much after the operation the first day

despite the morphine drip and weakness/stiffness the day after the surgery, the patient will be up for short walks.

the fellows stop by each day usually early am and early evening

if you have trouble sleeping, sleep meds (they like restoril) are available after 10 pm (the fellow can prescribe if necessary)

the patient will have sleep interrupted several times at night for a blood draw, vital signs, iv bag changes, etc.

the day of the surgery begins by going to the patient reception area. there you will change be seen by medical staff, and then wait in waiting room area. the waiting room area is limited so the staff may allow only one relative to wait with the patient. When it is time to go to the or, you will be wheeled in a wheel chair to the or. in the or, you will be moved to the surgical table and strapped down. Everyone will greet you and tell you to relax and reassure you. it is cool in there and you will have a warmer placed over your shoulder area. they did not tell me when they were going to put me out, so you are going out right about that time. i would estimate that i was out a little after 7 am. i did not remember much about the recovery room thereafter. i felt tired and very groggy so i dont remember much other than seeing relatives and then later arriving at a hospital room.

relax and enjoy the stay! probably the worst part of the whole thing is getting the digestive system working again. stop the morphine drip as soon as you can because it delays restarting the system. the pain will probably not be as bad as you would think. having the runs while things get back on track is probably worse than any other type of pain or discomfort. once your digestive system is working and there are no other problems, you will be going home -- the bumpy roads were a bit painful but it was good to get home and relax.

the patient will probably feel tired for several weeks after the surgery. just relax and enjoy the time off. i went back to work four weeks after surgery. i had residual pain for about 3 months, decreasing with time, but feel pretty good at four months post the experience.


YOU ARE IN GOOD HANDS!!

take some morphine prior to getting out of bed

The patient will be catheterized. When you're helping him out of bed make sure to keep the catheter bag lower then the patients waist. The urine rushing back into the bladder can be quite uncomfortable.

He may gain between 15 and 20 lbs and as a result his ankles may be swollen. You may want to bring sandals (or something else that slips on) for him to walk in.

Even if your doctor doesn’t recommend it stay on a fat free diet for a few days. It will help the ends of the lymph nodes heal.

I know the weight gain sounds excessive but the kidneys will be in shock for a few days and when they begin to work properly again the weight will come off.

If you can get a T bar over the bed so the patient can help themselves get out of bed.

[Scott]

Maybe we'll see you in Sept.!

I hope so!

[DianeE]

Dadmo, thanks so much for the insight. It's not easy not to
worry about the surgery, but you've made it sound so logical!
I will let the doctors worry about the surgery and I'll concentrate
on doing whatever I can to help my son and his wife get through
the recovery. Brian has read this post and the many others and
he is very confident about having the surgery and getting on with
life.

Diane

[dadmo]

Isn't it nice to not feel so alone? We're all here to help, it just happens that it's (unfortunatly) your turn.

[Kev332]

DianeE,

Isn't it wonderful how great this site is!! Its always comforting to hear other stories and to know things will be okay soon. Everyone on this site are so helpful!

I had my RPLND a little over 2 years ago. Its weird because I can remember it like it was yesterday. Yes there were some tough times after the surgery, but things do get better and your son will do fine. By the sounds of it, he has a great family to help him along the way, which is very important.

-Kevin