Unusual Path Report/Now Chemo AND RPLND

[Dave40306]

Hmmm, where do I start. Here's some basic info about my situation

Jan 2006: Severe pain in left testicle
Feb 06: Left testicle begins to swell - Visit GP - Says most likely infection, prescribed Cipro
March 06: No change, Get Ultrasound - no visible tumor - Swelling increasing
March 31: See Urologist, immediately suspects cancer, orders Tumor Marker blood test
April 3, 2006: AFP 2500+ says, "Yup, it's cancer, gotta take it out".
April 4: Go for second opinion - Diagnosis confirmed. Suggests banking sperm and getting chest x-ray and abdominal/pelvoic CT scan and redo blood test to confirm - Now have new Urologist
April 7: AFP now 3300, Chest Xray Clear/CT shows 2 very slightly enlarged nodes
April 10: I/O to remove left testicle
April 19: Path report says: Yolk Sac Tumor (no percentages, nothing else described) Tumor size: 7.0cm x 6.0cm x 4.0cm (Entire testicle only 7 x 6 x 5!) That explains why no tumor on Ultrasound! Both Urologists suspected entire testicle involved. Tumor limited to testis BUT Venous/Lymphatic invasion present; Also says "Intratubular germ cell neoplasia"; Serum markers S2 (only AFP, nothing else elevated); Pathologic Stage pT2, pNX, pMX

Per Urologist that did I/O, next step is visit with Oncologist and most likely treatment path will be Chemo (in about 4-5 weeks) followed by RPLND. Both of my worst fears are coming true. I was hoping to avoid both and now it looks like I'm going to need both.

Treatment so far in New Haven, CT. I'm going to try to get into MSKCC soon for consult there. Seems I may have a fairly unique case that might require some real experts.

Anyone else have a similar situation? Also, I'd love to hear how others got into Sloan and how much Sloan "took over" entire treatment.

How is/was RPLND after chemo?
How much downtime between end of chemo and surgery?
Is recovery from RPLND after chemo harder?

I have to admit, for the first time ever, I'm scared for my life. Not only from the cancer but from the effects of chemo and major surgery!

Dave

[dadmo]

Dave:
Your pathology report is the same as almost all others with non-seminoma, if that’s any relief. You will be cured you just have to go on a bit longer route.
If you should contact Sloan they will tell you to bring in the slides from your local hospital (for review only) then they will schedule you for all the same tests, they want their own lab work. By the time you get to Sloan you should have a treatment plan in place with you local oncologist, what they will do is either agree or disagree with you local oncologists plan. If you are comfortable having it done in New Haven have it done there, it’s a simple IV drip and can be done in many locations.
At you initial visit with Sloan they will set up a date for you to visit them after you are done with chemo, again they will run a full set of labs. It is at this point you will know for sure if you need the RPLND. If this operation is required I suggest you have it done by Dr. Sheinfeld at MSKCC he is one of the world experts in this particular operation.
If the swelling in the nodes is completely gone you may be able to avoid the RPLND but MSKCC is very aggressive with this operation so I would be prepared to get it done.
The operation will be 6-8 weeks after the end of chemo. For your part the fact that you have had chemo will only mean that it will take longer. The organs inside will not be as firm as if you had not had chemo (they will eventually return to normal) and this is where you need a skilled surgeon.
With no lung involvement and using MSKCC you will probably be getting 4 round of EP
I know it’s a lot to accept right now but you will be ok. Many members of this site (including my son) have been down this same road with excellent results. If you have any other question just ask. We’re here for you.

When I needed to get in touch with Slaon I called Dr. Motzer’s direct line at about 7am and he answered the phone. I was shocked, he allowed me to ask plenty of question and even scheduled our first appointment. (he must have heard the fear in my voice).

[Dave40306]

Dadmo,

Thanks for the info. The way my Urologist made things sound regarding the size of my tumor and the 100% Yolk Sac on the path report, I thought my situation might be a little unique.

I've got a friend of a friend that has some influence over at Sloan so I'm hoping they can help get me in.

If I can get the chemo done locally I will and there's no doubt that I will have Dr. Sheinfeld do the RPLND if I need it.

How long from my first Oncologist's visit to start of chemo usually?

Dave

[nzsteve]

Hi Dave,

I had chemo followed by RPLND after a relapse. Neither of them are a nice experience, but youll get through it.

Hard to compare the recovery from the 2 really. I was pretty lucky with the chemo and didnt get too many side effects. It only took a couple of weeks after the last cycle ended for me to feel physically normal, back sleeping normal hours. My fitness was shot to pieces, but I was able to be back at work. Biggest thing with the chemo is the length of time - 3months of feeling pretty run down and tired.

I finished my last cycle in the first week of November, and had the surgery on Dec 15th, so a wait of about 6 weeks is right. Your body needs to recover quite abit after the chemo before they will goto work. I had 10 days in hospital, suffered pretty badly with bowel distension which was pretty painful. As Dadmo says, get the most experianced surgeon you can - Im sure I my recovery would have been better if my guys had done more of them. Once out of hospital the improvement was rapid. I was back to work (lazy desk job ) full time 6 weeks after surgery, and all clear for exercise mid Feb, as long as I stopped if it hurt. I was back playing soccer, full 90min games, mid March. Other than my fitness levels still being poked Im pretty good.

Let us know how you get on - the oncologist will probably want to start chemo soon as possible after the appointment, so dont be surprised if they wants to see you again 2 days later

Good Luck,

Steve

[Kev332]

Dave,

Welcome to the forums. You've come to the right place for questions and answers... There are many members here who will be more than willing to help you out =)

Looks like you are taking all the right steps to get this taken care of. Its going to be tough for a while, but you will be fine in the end. You're actually really close to where I live (I'm in S.Windsor CT), so if you ever need anything, let me know. Everyone on this site is here for you also.

Take care and keep us updated.

-Kevin

[Karen]

Dave,
You don't need any strings pulled to be seen at MSKCC...they know that anyone calling is dealing with fear and anxiety and a major life event, so you will be seen quickly.

We went to Sloan for a confirmation of the pathology and treatment. We called the new patient number (on their website) and got an appointment within a week. In general, it's a good idea to get and keep copies of all your reports and labs on hand. We FAXed all bloodwork and the final pathology report to Sloan immediately (they wanted the FINAL, not his preliminary), the pathology dept where surgery was done sent slides directly to Sloan. They wanted that stuff to look at before they saw us. We carried the chest X-ray and CAT scans with us the day of the appointment. Sloan did not repeat any tests in my husband's case. Bring a good book because that waiting room moves SLOWLY. Stage I seminoma was radiation for my hubby, which he did locally and got no pressure to do it at Sloan. For a RPLND we'd be with Sheinfeld in a heartbeat.

The anxiety, fearing the worst, and waiting is so hard. You will be fine!!!!! Go to battle and kick some a**. Keep us updated and vent whenever...the guys here are wonderful and they have been there, done that! Take care!

[Vinny]

Hey! Welcome to the club, sorry about the steep initiaition fee!

I had chemo and RPLND myself, and in my opinion the RPLND was a piece of cake compared to chemo. Chemo sucks - it just wears you down over time, and just as you start feeling better after the end of a treatment round, you start the next round. You can handle it, but it's definitely not fun. I had my RPLND on a Tuesday and went home on Friday.

Sounds like you're going down the right path at this point. Get another pathology opinion from Sloan, visit your oncologist, get comfortable with the roadmap to recovery, and get to work getting better. Arm yourself with lots of information, it makes you a better patient when you appreciate the big picture. Check out the archives, TC-NET, TCRC, blogs, etc. TC is very treatable and very beatable.

I would highly recommend having a port-a-cath implanted for your chemo - it makes life a lot easier on your arms. I think there was about 2 or 3 weeks between my first visit to the oncologist and the first day of chemo.

After chemo they'll probably give you a month or so to recuperate before any surgery. My chemo ended 4/17/05 and the RPLND was 5/31/05 (at IU, but it's a lot closer to where I live than Sloan, either is a great place).

Good luck! Keep us posted.

[Derek12]

in New Haven?If its Yale he will get 3XBEP...my friend consulted woth sloan and because Yale favors BEP they agreed.

[Scott]

What are you hearing as the reason for the RPLND? Is that just being laid out now as a possibility so that you're prepared for the idea? I would expect that chemotherapy may well be sufficient.

[huckchef]

best of luck and many thoughts and prayers are with you daily!! hang in there!

[Dave40306]

I'm seeing doctors at St. Raphael in New Haven, not Yale so I don't know if their chemo treatment suggestion will be the same.

Scott, I think my Urologist is just preparing me for the possibility of an RPLND more than anything right now because it might be needed down the road. From what I've been hearing, if I do get Dr. Sheinfeld at Sloan involved, he will most likely want me to have the RPLND post-Chemo. I suppose if my markers come back to normal after Chemo, then surveillance may be an option at that point.

Thanks for all the kind words everyone. It sure is great to be able to hear other's experiences and get advice from people that have been through it all.

Dave

[dadmo]

Dave:
If your nodes return to normal size after chemo you shouldn't need the RPLND. The problem is that many times they stay slightly enlarged and when they go in all they find is scar tissue. Not having teratome as a component of the original tumor should reduce the chances of need the RPLND.

[Dave40306]

Off to MSKCC

Setup my initial consult at Sloan for next Tuesday, May 2nd.

Very nice and helpful people to deal with so far.

I'm also going to see a local Oncologist and as long as they both agree on treatment, I'll have the chemo done locally.

Dave

[dadmo]

Dave:
That should work out fine. Nancy and I did that with our son and it was quite a relief to be able to have the chemo done less then a mile from home.

[dadmo]

Dave Started Chemo

Dave:
How was the first day?