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Thread: Results and Options

  1. #1
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    Results and Options

    Well I attended the Royal Marsden (London) toda to get my results for the first time since my I/O on 17th Dec 07.

    Been told that both CT and Chest scans are clear.

    My AFP is back to normal 7 (from 31 pre-surgery)and my BhCG is normal below 2 (from 58 pre-surgery).

    Now i have to make a choice on what todo.

    Ive been offered surveillance which consits of in the first year blood markers every month, chest x-ray every other month and CT twice.

    2nd year blood and chest x-ray every three months and CT once

    3rd year only blood and chest x-ray 3 times during the year

    And during the 4th and 5th year blood and chest twice a year.

    My other option is to have chemo which would involve 2 cycles of BEP.
    Instead of spending days 1-5 having chemo i would only spend days 1-3 then days 8 and 15. I wouldn't be having the full dose of chemo either.

    Any thoughts are welcome.

    Mat

  2. #2
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    This is a very personel choice but for me I would choose surveillance and save the chemo for when I'm certain it's needed. If your markers came down and there is no evidence of spread the chance that you are cured is about 80% which means that you have an 80% chance of being over treated. Even if you should need chemo later on it won't change your overall chances of beating the disease.
    Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

    Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

  3. #3
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    Hey Mat,

    I agree with dadmo on this one. You can save the ammo in the event of a relapse, and even if you do, 3xBEP is likely to give a cure. Just make sure you keep will all the labwork. Your tumor produced markers, so that will help in picking things up quickly. What was the composition of your tumor?
    "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
    11.22.06 -Dx the day before Thanksgiving
    12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.


  4. #4
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    another surveillance vote from me...

    good job staying on top of this....and if you do choose surveillance, keep those appointments...

    pete
    - lump first noticed 11/20/2005
    - I/O right Dec 8, 2005
    - 95% embryonal / 5% seminoma
    - normal markers PRE surgery
    - no vascular invasion, tunica free of cancer, epididymis free of cancer, lungs free, lymph free
    - Stage I diagnosis
    - surveillance
    - mid feb '06, beta hcg slightly elevated = 4.6...small enlarged lower node seen on CT scan...
    - 3BEP began feb 20, 2006
    - finished 3 BEP, last bleo, april 17, 2006
    - CT scan, blood markers, chest..all clear
    - back on surveillance

  5. #5
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    Mat - did they tell you what stage TC you have, the make-up of your tumor, and if if you had vascular invasion? My urologist did not recommend surveillance for me even though my markers normalized 4 weeks after I/O and my CT Scans were clean before and after I/O.

    He said that since I had vascular invasion, and some teratoma he recommended a more agressive approach to treatment. I went to Sloan for a second opinion and they agreed. Can you share some other data from your pathology report?
    Manoj
    09.29.07 - visit to ER with severe pain
    10.08.07 - Dx with TC
    10.10.07 - Rt I/O. Dx - 90% EC, 10 % yolk sac tumor, less than 1% immature teratoma & choriocarcinoma
    11.21.07 - (day before Thanksgiving) NS RPLND @ MSKCC
    11.28.07 - Return back home, recieve lab report. 86 lymph nodes removed - all clear. Begin Surveillance
    04.10.08 - 2 cm nodule detected in lungs
    04.28.08 - Starting 4XEP
    07.03.08 - 4XEP complete
    end-Sept - CT Scan scheduled

  6. #6
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    Because your tumor was confined to the testical (no vascular invasion) and your afp went down I would say surveillance is a good option.
    May 2000 I/O 100% Emb. Carc./June 2000 RPLND, 1 Node with Micro Involvement/ July 2000 1xBEP, 1xEP

  7. #7
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    Sorry but i forgot to ask the make up of the tumour but i have another appoitment next friday to disccuss what i will do next, so i will get a copy of the report then.

    When i did go before christmas they had part of the pathology report which stated that the tumour was confined to the testicle, and i was told today that there was no sign of spread.

    Once i get the make up of the tumour i will post it. I will try to call on monday.

    Thanks for all the advice

    Mat

  8. #8
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    I personally always favor surveillence, saving treatment for when it is definitely needed, but as Dadmo said, it is a personal decision. Some guys hate the idea of the wait and see, whereas other are not bothered too much. Any option you choose will get you where you want to be.

    Best wishes
    Fish
    TC1
    Right I/O 4/22/1988
    RPLND 6/20/1988
    TC2
    Left I/O 9/17/2003
    Surveillance

    Tho' much is taken, much abides; and though we are not now that strength which in old days moved earth and heaven; that which we are, we are; one equal temper of heroic hearts, made weak by time and fate, but strong in will; to strive, to seek, to find, and not to yield.


  9. #9
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    Quote Originally Posted by Fish
    I personally always favor surveillence, saving treatment for when it is definitely needed, but as Dadmo said, it is a personal decision. Some guys hate the idea of the wait and see, whereas other are not bothered too much. Any option you choose will get you where you want to be.

    Best wishes
    I think its all about understanding the odds of recurrence. If CT Scans are clean and there is no sign of vascular invasion then your odds are in your favor for cure. However, in my humble opinion, if someone has vascular invasion with a makeup of embrynol cell then I think rplnd becomes a great choice, even if ct scans are clean. I can understand why someone would not want to be too aggressive and over treat but I also think it is important to tackle cancer when there is the least amount in your body as possible.

    We sure are lucky that we all have options that achieve the same cure rate.
    May 2000 I/O 100% Emb. Carc./June 2000 RPLND, 1 Node with Micro Involvement/ July 2000 1xBEP, 1xEP

  10. #10
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    My concern for overtreatment is mostly with chemo and not so much with an RPLND.
    Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

    Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

  11. #11
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    Quote Originally Posted by dadmo
    My concern for overtreatment is mostly with chemo and not so much with an RPLND.
    I agree 100%. That's what make the rplnd so valuable.
    May 2000 I/O 100% Emb. Carc./June 2000 RPLND, 1 Node with Micro Involvement/ July 2000 1xBEP, 1xEP

  12. #12
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    I definitely agree with you guys about the RPLND. I was so happy when my lymph nodes came back clear, I felt the RPLND was well worth it to get that information. One caveat to RPLND is that embryonal cell will somtimes spread via the bloodstream bypassing the retroperitoneal lymph nodes.
    Fish
    TC1
    Right I/O 4/22/1988
    RPLND 6/20/1988
    TC2
    Left I/O 9/17/2003
    Surveillance

    Tho' much is taken, much abides; and though we are not now that strength which in old days moved earth and heaven; that which we are, we are; one equal temper of heroic hearts, made weak by time and fate, but strong in will; to strive, to seek, to find, and not to yield.


  13. #13
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    Thanks for all the replys.

    Ive decided to have the 2 rounds of BEP as a precaution. This will now start 2 weeks today (25th Jan 08).

    Another good sign is that my blood markers have dropped again.

    On 27th Dec 07 AFP was 7 and BHCG was <2
    On 4th Jan 08 AFP was 4 and BHCG was <2.

    Sorry but i still can give the full make up of the tumour. This is because the Royal Marsden in central London was on fire last week (this is the cancer specialist hospital in the UK) and im at another site but the LAB is at the one that was on fire and its not safe yet to go back in. Should get it in the next few days though.

    Cheers Mat

  14. #14
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    Glad you came to a decision. It's not an easy choice.

    I hope everything goes smoothly with the BEP.

    I'm sure you'll get a lot of good advice and tips from some of the folks who have been down that road.

    Best wishes
    Fish
    TC1
    Right I/O 4/22/1988
    RPLND 6/20/1988
    TC2
    Left I/O 9/17/2003
    Surveillance

    Tho' much is taken, much abides; and though we are not now that strength which in old days moved earth and heaven; that which we are, we are; one equal temper of heroic hearts, made weak by time and fate, but strong in will; to strive, to seek, to find, and not to yield.


  15. #15
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    Mat...glad to hear the markers are going down, but I am sorry you have to endure any chemo. The good news is you are being aggressive about getting treatment. Good for you!!

    If you need any tips or helpful advice about BEP, let us know.
    Co-survivor with husband Boyce, Diagnosed 7-11-06, orchiectomy right testicle on 7-12-06- Stage 3A: Mixed germ cell tumor with inguinal seminomatous and kartotypic carcinoma. One tumor over 10 cm, second tumor 4 cm, Chemo 4xBEP: Bi-lateral RPLND Dec 2006, nerve sparing but left sterile.
    Current DVT
    Current testosterone replacement therapy, Testim.

    "You must abandon the life you planned, to live the life that was meant for you" ~wisdom I have learned from my family on this forum

  16. #16
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    Mat:
    Congratulations on making that decision. Don't try and second guess yourself, you picked a perfectly reasonable path now just stick to it.
    Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

    Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

  17. #17
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    Hi Mat,

    I too was treated at the Royal Marsden in Sutton under Prof. Horwich/Dearnaley, and your certainly in good hands. I didn't have the difficult choice you've had to make, but now you've made it, at least your confident that in the worst case you're nipping anything in the bud, and it will give you peace of mind.

    I'm back in the Marsden next Friday (18th) for a 3 month check up (I'm 20 months post-chemo), so if you're also in for the regular Friday TC clinic, tap me on the shoulder and say hello! My photo is in the photo thread on the ballroom tab.

    Anyway, best of luck.

    Davie.
    Diagnosed March 2006, Stage IIB, 3cm RP mass
    10% Seminoma, 90% Non-Seminoma (Embryonal, and a tiny amount of choriocarcinoma and teratoma)
    Prechemo bHCG-2648, AFP-582
    3xBEP March-June, markers normalised
    3 months postchemo - 1.2cm residual RP mass
    RPLND September 2006 - mostly necrotic tissue plus tiny amount of well differentiated teratoma
    June 2009 - TRT commenced to help out my lefty
    May 2011 - check-up, all clear

  18. #18
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    Good luck with everything Mat! Keep us posted.
    4/26/07 - mass confirmed w/ no elevated markers
    4/27/07 - left I/O
    5/2/07 - Dx: 100% seminoma stage 1A
    Surveillance: CT/blood (6 month cycle)
    4/27/12 - 5 years cancer free!

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