New Update

[Beth]

We went to see Dr. Ritchie in Boston yesterday. He says Jason should get the RPLND. We asked about seeing an oncologist and he says not to yet. We left his slides and drew more blood. We will find out those results tomorrow, I hope. So here I sit, confused as to why, with EC, he would not tell us to see an oncologist. We already know there is vascular invasion. He said if Jason has less than 6 lymph nodes with cancer, he will go on surveillance. I think we should talk to someone else, but so far the oncologists in RI have told us to go to Dana Farber, who DR. Ritchie is assocated with. He does 1 RPLND's a week, which obviously is a lot for this. It isn't that I question his competency, I'm just getting mixed signals. I bet if we took him to an Oncologst first, they would have told us Chemo. Any advice?

[Already Bald]

He said if Jason has less than 6 lymph nodes with cancer, he will go on surveillance.

Hi Beth,
That statement is a little confusing to me, I think you should call the doctors office and ask them to go over your options again.
It seems to me if Jason has less than 6 Lymph Nodes enlarged, he is a canidate for RPLND.
I would, however have an expert oncologist handle surveillance during and post RPLND.
Why not just get a second opinion at DF?

[Margaret]

We went to see Dr. Ritchie in Boston yesterday. He says Jason should get the RPLND. We asked about seeing an oncologist and he says not to yet. We left his slides and drew more blood. We will find out those results tomorrow, I hope. So here I sit, confused as to why, with EC, he would not tell us to see an oncologist. We already know there is vascular invasion. He said if Jason has less than 6 lymph nodes with cancer, he will go on surveillance. I think we should talk to someone else, but so far the oncologists in RI have told us to go to Dana Farber, who DR. Ritchie is assocated with. He does 1 RPLND's a week, which obviously is a lot for this. It isn't that I question his competency, I'm just getting mixed signals. I bet if we took him to an Oncologst first, they would have told us Chemo. Any advice?

Beth, I strongly suggest a second opinion. I agree with Joe 100%.

Our doctor put it to us this way...it takes millions of cancer cells combined to even show up on a scan. If 6 lymph nodes are infected, that means there could be microscopic cancer in other areas of body that are not showing up yet on a scan. Simply removing the 6 infected lymph nodes may not be all the help he needs.


I just want your son to get the very best care right out of the gate. please let us know what you need from us.

[Kev332]

Beth,

This does sound a little odd... but Dr. Ritchie is a great doctor.. I had my RPLND done by his partner (Dr. Steale) at Brigham and Womens Hospital, however he did refer me to an oncologist at Dana Farber after I met with him and prior to the RPLND. I would make an appointment to see an oncologist at D.F. and go over everything.

-Kevin

[Fed]

Beth,

I concur with everyone else here. Even though Richie is correct in suggesting the RPLND as a next step, the person managing the treatment team should be a medical oncologist. I strongly suggest that you talk to DFCI directly and make an appointment with the GU clinic. My oncologist (Robert Ross) is excellent, and I am sure Kev332 and KMan will second me on that . To book an appointment with him, contact his assistant (Tim Smith) at 617-632-4974.

I am not questioning the competency of Jerome Richie, but you have to keep in mind that he is a surgeon and will likely recommend surgery before anything else. I also want to reiterate that you need to move fast on this, and please let me know if there is any way I can help. Feel free to drop me a line or a PM if you need to.

[Beth]

I think the way I worded that was wrong. He is taking out 20 nodes, then only if 6 of those have cancer, would he say use chemo (after surgery). But I agree, I need to talk to oncology. Thanks all!

[Margaret]

Beth, we did chemo first, but I have heard there are many advantages to having the RPLND first. Once the chemo shrinks the tumors, the area is "sticky", at least that was the word Dr. S used at Sloan...which makes it a more difficult surgery. So I guess having the RPLND first can be a great thing. My husband's tumor was so large, grapefruit size, so chemo first was a must.

Best of luck!

[Beth]

Done! Thanks Fed! They have already converted his records from B&W to DFCI, and will call us back to schedule an appointment. Do you think he will need both treatments in some order or should I assume one or the other? Also how long is reasonable for me to expect him to be out of school once this starts? He is bright, so it's not school work we are worried about. His school is ill-prepared for this thus far.

[Fed]

Done! Thanks Fed! They have already converted his records from B&W to DFCI, and will call us back to schedule an appointment. Do you think he will need both treatments in some order or should I assume one or the other? Also how long is reasonable for me to expect him to be out of school once this starts? He is bright, so it's not school work we are worried about. His school is ill-prepared for this thus far.

Beautiful! I myself am seeing Dr. Ross next week for my scheduled check-up . Like I said, feel free to contact me if you need anything else.

As far as treatment need, it really depends on the outcome. If chemo is done first and the abdominal CT after treatment reveals leftover masses, then an RPLND would be recommended. If RPLND is done first, and active cancer is found in the nodal pathology, then chemo could follow depending on further labwork results.

3xBEP takes 9-10 weeks (week 1 is for 5 days, weeks 2 and 3 is only one day for the bleo push; then the cycle starts over). For RPLND, it really depends on the surgery and the person, but from what I have heard, younger guys usually recover quite quickly from it (I won't quote times because I'm not too sure about those).

Is this Jason's senior year? With either treatment he is bound to miss some school, but he should be able to keep up; and if he needs a science tutor, I can help with that .

[Scott]

Hey, Beth, if you haven't already, take a read through this TCRC page on the RPLND decision.

I see you'll get new blood test results this week. Did you get the tumor marker levels from the last tests? How enlarged did his lymph nodes appear in his CT scan?

[Already Bald]

If RPLND is done first, and active cancer is found in the nodal pathology, then chemo would follow.

I'm not so sure about that Fed, the RPLND can be curative.
I think Dr. Ritchie was telling Beth that if 6 or more nodes were active, then her son may need post RPLND Chemo.

Beth, so happy to read you are moving towards a cure!

[Fed]

I'm not so sure about that Fed, the RPLND can be curative.

Thanks for bringing up this point. I have edited the post by changing "would" to "could". The new phrasing should be more accurate.

[dadmo]

Beth:
I know by now your head must be spinning with information but it sounds like things are beginning to come together. It a huge step that you're learning the language and options. You're doing a great job.

[italian_tc]

rplnd can be curative! If less than 6 nodes, none of them greatest than 3cm (sorry for the metric system...)the probability to be cured with rplnd is from 50 to 75%...if more than 6 nodes are found at rplnd 2 bep is preferrable.
This rate is valid only if you have clean ct scan and clean markers...
most of you know this but check it: (Richard Foster about rplnd)

http://www.moffitt.usf.edu/pubs/ccj/v9n4/pdf/277.pdf

bye
davide

[Beth]

I'm not sure I want to take up to a 50% chance on it not being cured with chemo. He is 17 and will not be on my insurance forever. I think being aggressive while he is insured is best for his financial future. Once he is off our insurance, won't cancer be a previous condition and cause his insurance rates to rise? Also he is so young that getting a job with health benefits is not going to happen within the next few years. With both the surgery and chemo, he would almost 100% be cured..or am I wrong on that?

He wants to bank some sperm..is before the surgery a good time, or do we take the chance and wait to see if it's needed? At this point, he is going for surgery Oct 22. Thanks Again All!