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Thread: It just happened so fast!

  1. #1
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    It just happened so fast!

    Hello everyone, my husband (29) found a lump on his testicle in late September. He put off seeing the Dr. right away, but finally went to see the dr. mid October after noticing the lump had become bigger. We were referred to an Urologist asap and he was given a million tests (CT, Xray, blood, ultrasound) The Urologist told him TC was most likely and he should have his testicle and spermatic cord removed for a biopsy. He had his surgery on November 5th, everything went well. Finally got some results back today:

    This is what we were told

    -It's a nonseminoma, 100% embryonal

    -spermatic cord showed no cancer cells

    -Markers came back clear

    -testosterone levels are low-normal is 10-35? He is an 8

    -We are still waiting on the CT and chest Xray results and should know within a week.

    -He was referred to an oncologist for recommendations on what to do next.

    I have a few questions:

    -Do you think the cancer could of spread to other parts of the body without going though the spermatic cord?

    -Is it likely anything will show on the CT or Xray?

    -Do you recommend Chemo or to just monitor it?

    -Why do you think his testosterone are so low? (We are having them checked again)

    -Any info on fertility and TC would be great also.

    If anyone can help us out with these questions, that would be great!! This has been a very stressful time for us

    Thanks
    Jenny

  2. #2
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    Jenny,

    I have only been in this situation for a few months myself. I hope you got a chance to visit princess margret in toronto, I hear it has a great bunch of doctors many with a speciality in TC(I work in toronto weekly).

    I am hardly an expert in this field and my particular tumor was a seminoma so its aggressiveness would be different from most of my research. I can however reccomend you research another scanning technique which is still experimental but becoming more widely used (even in ontario!) called a PET/CT fusion scan. A PET scan is a metabolic study that is sometimes more effective for staging cancer.

    If your husband is a person who will follow a strict surveillance schedule for 5 -7 full years (most of the time its 5 but i know princess margret tends to do seven with seminoma, dont know about non-seminoma) then survialence is a much less invasive process (obviously) than chemo. If you think there is a chance he will skip out or get lax (and you need to think years down the road here) you need to weight those odds against the odds of a relapse and give treatment more serious consideration.

    Your encologist will lay out the field for you, can you get a second opinion under OHIP? Once the surgery is done you can spend a little more time gathering the facts.... At least that has been my experience.
    Courage is fear holding on a minute longer.


    Incorrect Diagnosis of epididymitis: 8/17/07 - BE SURE!
    Diagnosis: 08/28/07
    Tumor markers: normal
    Left I/O: 08/29/07
    100% seminoma

  3. #3
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    one more thing

    the low level of testosterone is nothing I can speak to and may adversely (or not at all) affect fertility. However due to the chance of relapse I highly recommend investing in a sperm bank.

    Again this is all from my understanding from my urologist, i am not in any way a medical professional but you can continue to be fully fertile with only one testicle (my urologists exact words were "there are PLEANTY of powerful 4 cylinder cars" ). I myself have banked and supposedly maintain a good motility and count well after my surgery.

    Here is why you should be concerned: my understanding is that your testicles act as a pair, if one is weak or not there then the other takes over ,if your husbands testostorne is low that can mean that the tumor affected a "dominant testicle" leaving the weaker one behind. That doesn't mean it cant still be fertile but it does mean it still has to compensate.

    Glad to hear you are getting this rechecked, best of luck to both ofyou.


    oh yea: http://www.familyhelper.net/iy/iyclin.html

    a list of fertility clinics in canada, many include sperm banks.
    Courage is fear holding on a minute longer.


    Incorrect Diagnosis of epididymitis: 8/17/07 - BE SURE!
    Diagnosis: 08/28/07
    Tumor markers: normal
    Left I/O: 08/29/07
    100% seminoma

  4. #4
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    Hi Jenny. I am so sorry for your husband's news and I promise this is a great place for support. Many wives here have been in your shoes, myself included. As for your questions I will try and help:

    Do you think the cancer could of spread to other parts of the body without going though the spermatic cord?

    I would have to say that only a doctor can tell you this once they review the CT scans

    -Is it likely anything will show on the CT or Xray?

    If the cancer has spread to any other areas it will show up on the scan and the oncologist will work with you on treatment options.

    -Do you recommend Chemo or to just monitor it?

    Depends on what the CT scans find. The doctor will most likely give a strong opinion on what he thinks is best. If the cancer has spread to any other parts of the body, more treatment of some kind will surely be needed.

    -Why do you think his testosterone are so low? (We are having them checked again)

    I would assume it is because of where the cancer started. My husbands T levels are also low and I think it is a common side effect of this cancer. Low T levels can also be treated.

    -Any info on fertility and TC would be great also.

    You can discuss with your doctor the option of banking sperm. If his sperm has already been effected by the cancer, many times after treatment, the sperm returns and is more healthy than before.

    I am not sure if I helped much. Most of your answers will come from your doctor on what the next steps will be. The waiting is horrible and I am sorry about the stress and anxiety it is causing. It will eat you alive. Let me know if there is anything I can do or if you need someone to talk to...I can give you my number.

    Love,

    m
    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

  5. #5
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    Hi Jenny and welcome.

    I just wanted to add to what the other have alread said.

    I have a few questions:

    -Do you think the cancer could of spread to other parts of the body without going though the spermatic cord?

    Embryonal cell can spread through the lymphatics or the blood stream. The CT scan will help to determine if it has spread. Were tumor markers normal before surgery?

    -Is it likely anything will show on the CT or Xray?
    No way to know, but these tests will help to stage the cancer.

    -Do you recommend Chemo or to just monitor it?
    This will depend somewhat on the results of the tests and whether or not the TC has spread. Your oncologist will give you the best advice. As Matt said, Princess Margaret Hospital is a great center for TC treatment. You should contact them as soon as possible.

    -Why do you think his testosterone are so low? (We are having them checked again)
    Could be trauma/surgery related, the re-check is a good idea.

    -Any info on fertility and TC would be great also.
    Most guys have normal fertility after TC, and a number of our forum members have fathered childred post tc, even post chemo, but sperm banking is a good idea if chemo is necessary in th future.

    It sounds like things are on the right track. But consulting an expert is always a good idea. Most urologists see only a few cases of TC each year. For 100% embryonal cell, I would personally go to an expert and since you're in Ontario, definitely check with Princess Margaret.

    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.


  6. #6
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    Hi Jenny and welcome to the Forum.

    I always marvel at all of our members and how knowledgeable and helpful they are. Thanks to everyone who has posted already.

    I do have one more thing to add. If he goes the surveillance route -which at this point seems like a very reasonable option- he will be checked every 2 months (labwork and CTs) so a relapse can be caught quickly if it were to occur. Without any evidence of spread, there's a 70% chance that the I/O has cured him.

    Best of luck, and keep the questions coming.
    "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.


  7. #7
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    Thank you everyone on your knowledge and quick reply! I am do glad I found this site your all a great support!

    Thanks Matt, I will be asking about the PET/CT when we visit the Oncologist, not sure when this appointment will be yet, still waiting on a call. I think my Husband will be on top of things with the screenings it we go the route. He knows the importance of having things checked out. I'm not sure what/where he will be sent for the oncologist appointment, but hope it is Princess Margret! OHIP will cover a second opinion, but we first want to see the oncologist. Thanks for the link for sperm banks, I will be looking into that. I hope it doesn't cost too much!

    Thanks Margaret for the support! Is your husband receiving hormone treatment? I heard this can deplete your sperm count, when most people think it will enhance it? I hate this sitting in limbo waiting for results. They are so slow here in Ontario!! You think because it is cancer they would move things along much faster!!!

    To answers Fish's Q:
    Were tumor markers normal before surgery? Yes they were. Is this a good thing?
    We can't contact Princess Margret, we have to be referred to the Hospital by our GP or Urologist.
    Thanks for your help!

    Thanks Fed for the added info, I would love to hear that they got it all and he needs no treatment!! PS your daughter is a cutie! How old is she?


    Here is a little more about my family:
    I'm 26 and Evan is 29. We have a 20 month old daughter who means the world to us.
    My husband just recently went back to school for 3 years to get his Civil Engineering degree after working for 6 years in a factory.
    I run my own childcare center out of my house.
    Our plan is to maintain good health and focus on family.
    We plan to have at least one more baby (hopefully!)

    I will keep you all updated on results and appointments. I also hope everyone here gets well and stays well! Does anyone know where I can donate money to TC research? I would love to do that!

    Thanks
    Jenny

  8. #8
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    Quote Originally Posted by eyeswideshut
    Were tumor markers normal before surgery? Yes they were. Is this a good thing?
    I would say it's generally a good thing. From a prognosis standpoint, lower markers are better. I had the same situation for my TC1; mine was not 100% embryonal cell, the report just said "a large embryonal cell component". They were not very specific 20 years ago.

    From a followup standpoint, if your TC dosen't make markers, the blood tests might not be as helpful in monitoring for recurrence. Of course you still have ct and x-ray to monitor. And modern CT's are extremely sensitive. Personally, I would be happy with normal markers at this point.

    Sorry you can't contact PMH directly, hopefully you'll get referred there.

    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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    Hi Jenny!

    My husband is still deciding on taking meds for his low Test. He will get his blood re-tested this month and we will see if it has improved. My understanding from our doctors is once he starts taking meds for it, his body will no longer produce it, so it is a big step to go on medication for replacement Test.

    I hope everything works out for you and your husband. please let me know if there is something I can do.

    M.
    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

  10. #10
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    Hi Jenny

    Sorry to have to welcome you to this forum but from our experience you will get excellent help and support from the members here. My son Matt posted about Princess Margaret, it is the canadian center of excellence in TC. I know the wait with OHIP is long but you must ask for a referral to Princess Margaret. Many of the articles on Tc in the Journals of Oncology and radiology come from the staff there. Namely, P. Warde and MK Gospodarowicz. Maybe if you print some of the abstracts and take them to your oncologist he will agree to write you a referral. Please look on this site at the NCCN clinical Practice Guidelines in Oncology, while these are the US guidelines the Canadian ones are similar, check out the PM website. I cant answer your medical questions but there is alot of information on this website and please let me know if I can help in any way. Good Luck Marion

  11. #11
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    Fish- This is all pretty confusing to me, I can't wait to speak to an Oncologist so he/she could give me a better understanding of what is going on in my husband. The Urolgist didn't explain things in as much detail as I would of liked. I would of liked numbers from tests so I could research and be better informed.

    Margaret- Are there any side effects to taking hormone replacement? Such a big decision he has to make. Good luck with it.

    veryworriedmom- Thank you for the information, I will be reading up on the info you provided me with. I also thank you for the names of those Doctors, I will be asking for a referral next time he sees the Doctor. I hope everything works out for your son

  12. #12
    I am sorry you are now part of the family. To give you a little positive feeling when my husband was diagonised he was 28 years old and I was 23years old. We had an 18month old kiddo and were trying for our 2nd. This was 3 years ago. He did 3rounds of chemo and surgery. In July we had our 2nd little girl.

    Keep us posted and good luck.

  13. #13
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    You made a great point about getting information form your doc. I don't know how open the system is in Canada, but in the US, we just request copies of records and the docs provide them. Some might charge a small copying fee, but I have personally never had to pay for them. It's very helpful to get the copies of results etc., if you can. If you ever change docs, or go for a second opinion, you have everything you need in your own hands.

    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.


  14. #14
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    Quote Originally Posted by EyesWideShut
    Fish- This is all pretty confusing to me, I can't wait to speak to an Oncologist so he/she could give me a better understanding of what is going on in my husband. The Urolgist didn't explain things in as much detail as I would of liked. I would of liked numbers from tests so I could research and be better informed.

    Margaret- Are there any side effects to taking hormone replacement? Such a big decision he has to make. Good luck with it.

    veryworriedmom- Thank you for the information, I will be reading up on the info you provided me with. I also thank you for the names of those Doctors, I will be asking for a referral next time he sees the Doctor. I hope everything works out for your son
    That is a good question, I am not sure what the side effects are...just that once he starts taking it, he will need it for life. Does anyone know the side effects?
    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

  15. #15
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    Quote Originally Posted by Jilleighn
    I am sorry you are now part of the family. To give you a little positive feeling when my husband was diagonised he was 28 years old and I was 23years old. We had an 18month old kiddo and were trying for our 2nd. This was 3 years ago. He did 3rounds of chemo and surgery. In July we had our 2nd little girl.

    Keep us posted and good luck.
    Thanks! That is such good news, congrats on the new bundle of joy! It's so nice to hear that life goes on. Is your husband clear now, are you just monitoring?

  16. #16
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    Quote Originally Posted by Fish
    You made a great point about getting information form your doc. I don't know how open the system is in Canada, but in the US, we just request copies of records and the docs provide them. Some might charge a small copying fee, but I have personally never had to pay for them. It's very helpful to get the copies of results etc., if you can. If you ever change docs, or go for a second opinion, you have everything you need in your own hands.

    Best wishes.
    I don't think they give out records and results in paper form. I'm going to have to look into that. The office is closed until monday and I will call and ask if I can have all the info in hard copy. I'll let you know what they say. I think just because we are not paying directly for med care doesn't mean we can't have the same rules? I mean it's his body, why can't he have the forms?

  17. #17
    Thanks! That is such good news, congrats on the new bundle of joy! It's so nice to hear that life goes on. Is your husband clear now, are you just monitoring?
    All of his scans have been clear since they said he was in remission. We just hit the 3 year mark from when they told us his scans and blood work were all clear. He still gets scans and blood work done. We are now on scans every 6months, and blood work every 3 months.

    How often are others getting scans. Every 6months is sorta nerve racking time. I liked when it was 3months Eric is pleased with 6 months less stuff he has to drink or have to get Iv's for!

  18. #18
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    Jilleighn, that's great! What are the chances of a relapse? When you say remission, does that mean there isn't anymore cancer in him or does it mean it simply has stopped growing? Sorry for all the Q's I'm new to this!

  19. #19
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    Hey Jenny,

    The chances of a relapse within two years for someone presenting with stage I-A non-seminoma (i.e. without lymphovascular invasion) are about 30%. Now, Evan had pure embryonal, which can be rather aggressive. If he follows the surveillance route, he needs to be on top of his game and not miss any appointments. Prince Margaret (and the NCCN here in the US) recommends bloodwork and X-rays every 6-8 weeks and abdominal/pelvic CT scans every 2-3 months for the first year.

    Now to your other question. Remission is when there are no symptoms whatsoever of the disease. For example, if you have one year of "all clears", then you have been in remission for one year. A relapse resets the counter to zero.

    Hope this helps. Cheers,
    "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.


  20. #20
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    Quote Originally Posted by Fed


    The chances of a relapse within two years for someone presenting with stage I-A non-seminoma (i.e. without lymphovascular invasion) are about 30%. Now, Evan had pure embryonal, which can be rather aggressive. If he follows the surveillance route, he needs to be on top of his game and not miss any appointments. Prince Margaret (and the NCCN here in the US) recommends bloodwork and X-rays every 6-8 weeks and abdominal/pelvic CT scans every 2-3 months for the first year.

    Now to your other question. Remission is when there are no symptoms whatsoever of the disease. For example, if you have one year of "all clears", then you have been in remission for one year. A relapse resets the counter to zero.

    Hope this helps. Cheers,
    Thanks Fed, Sorry, but I have a few more Q's:

    Ok, but how does a relapse happen if they have already removed the testicle? Does is goes in the tissure where it was? Or does it grow in the other testicle?

    So when someone is in remission, they can still had the cancer cells in them, but they are "dormant"?

    Sorry, this is all so confusing, I'm just trying to understand this nasty disease!

  21. #21
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    Remission begins when all tests show no signs of cancer. For most tc patients remission begins when chemo ends and for non-seminoma you are cure after 2 years of successful remission. A relapse occures when the cancer becomes active again while in remission. It simply means that it wasn't all killed during the first attempt. I think the most common form of relapse you will see is with guys who have the I/O and are able to choose surveillance. This really just means that so little cancer was in the system that it couldn't be detected and no treatment was called for at that time. These patients are now going to need chemo which they were able to avoid until they were sure it was needed.
    After 3 years my son just had a scare. He thought he felt a lump in his other testicle (it turned out to be nothing) this would not be a relpase but a completely new cancer and would be treated as such.
    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.

  22. #22
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    Yup, Bill pretty much covered it all. If cancer appears in the other testicle, it is ruled a second primary and not a relapse. Recurrences usually occur in the pathways of lymph node drainage, so the next stop is usually the retroperitoneal lymph nodes (on the back near the kidneys), followed by the lungs, then liver, brain, and bone. CT scans are pretty good at detecting this recurrences rapidly.
    "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.


  23. #23
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    dadmo, I'm glad your son is ok. I think I would be nervous about finding another lump too.
    So if they put my husband on surveillance it is likely that the cancer will eventually show up on a scan or blood test? Thanks for the info, it would of taken me too long to research in on the web. Life is busy with running my own business and a toddler! I am so thankful for finding this site!


    I also heard that to have your lymph nodes removed is a really invasive surgery? What is the recovery time? How long does it keep you in bed?

  24. #24
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    Quote Originally Posted by EyesWideShut
    So if they put my husband on surveillance it is likely that the cancer will eventually show up on a scan or blood test?
    If it comes back, a scan should pick it up. A blood test would if he showed markers to begin with.
    "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.


  25. #25
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    Well I awoke in the night in a panic, I remembered that the doctor said on Evan's last CT scan before his surgery his lymph nodes were inflamed/swollen. I don't know how I forgot that or why it woke me in the night. I'm not sure if this is something to be concerned about? I think it is.
    So far today I 've been trying to get though to the Urologist, but the line was busy all morning and now they are on lunch. This is so frustrating, all I want is the results to the last CT and chest X-ray!!! We are also still waiting for the appointment date to see the Oncologist. This is really starting to eat at me. I think they should be moving a lot faster!!!

    Thanks just needed to vent, not having a good day

  26. #26
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    If he has lymph node involvement surveillance will not be an option.
    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.

  27. #27
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    Quote Originally Posted by EyesWideShut
    Well I awoke in the night in a panic, I remembered that the doctor said on Evan's last CT scan before his surgery his lymph nodes were inflamed/swollen. I don't know how I forgot that or why it woke me in the night. I'm not sure if this is something to be concerned about? I think it is.
    So far today I 've been trying to get though to the Urologist, but the line was busy all morning and now they are on lunch. This is so frustrating, all I want is the results to the last CT and chest X-ray!!! We are also still waiting for the appointment date to see the Oncologist. This is really starting to eat at me. I think they should be moving a lot faster!!!

    Thanks just needed to vent, not having a good day
    I understand you frustration but don’t panic. One thing we know is how difficult it is to understand what’s going to happen without all pieces of the puzzle. And sometimes it’s tough to pull those pieces together.

    As for the nodes, they do vary in size and location is important. The first line of effected nodes is usually the retroperitoneal lymph nodes. They are located in the back of the abdomen and are generally considered ok if they measure 1cm or less.

    Some TC travels more readily through the lymph vessels and can show up in the nodes. Other types, such as Embrional Carcinoma spreads more easily through blood vessels and can show up next in the lungs. This doesn’t mean there aren’t exceptions but there are general patterns.

    The Pathology report should clearly state if lymphovascular invasion was present. This is important in staging to help identify the likelihood of spread.

    As for some of your previous concerns, the effects (if any) of replacement therapy can range from fatigue if dose is too low to acne if dose is too high. “Dialing in” on the correct dose, for me, was easy and I experienced practically no side effects. Also, fertility after TC does vary but more often couples have little trouble. My youngest son is post TC and just turned one in October.

    Keep asking questions but do what you can to get copies of the reports. Your doc only knows ‘swollen nodes’ if he has a copy of the report. Sorry the Uro didn’t provide more info. It sounds like a good time for you to get a little pushy. A disconnect during the handoff from Uro to Onc is really frustrating but the Onc is the primary contact now. Collect the reports and bring them with you to see the onc.

    Best to you
    -chris
    TC 1 10.18.2005
    Left I/O, Stage IA (pT1)
    Normal Markers, No VI or LI
    Teratoma, Yolk Sac
    Surveillance

    TC 2 9.12.2006
    Right Organ Sparing I/O, Stage IB (pT2)
    ^Markers, LVI, ITGN @ margin
    Embryonal Carcinoma, Yolk Sac, Teratoma
    RTx10 18Gy testicle only Complete 11.1.2006
    Surveilling Again, HRT

  28. #28
    Join Date
    Dec 2007
    Location
    Alberta,Canada
    Age
    34
    Posts
    49

    Hello my Fellow Canadian!

    Hi there so sorry to meet under these circumstances.

    I want you to know there is hope for fertility after an Orchietomy, my hubby Paul and I have a 9 yr old and then we had a baby only 9 months before he had his surgery than we got pregnant again a little less than a year after his surgery and we only tried for about a week or two, mind you Pauls tetostorome level was a bit higher I think 12? But not to worry there is hope, I am living proof and I am 6 months pregnant now.
    As for your hubby's swollen Lympth nodes, I wouldn't take a chance with that at all as here in Canada or at least in Alberta they do Surveilance every 6 months and in that time things can grow. At least that's what happened with Paul, last December they said he was all clear of cancer than in June/07 they said his Lympth nodes were swollen and we had a PET scan (deffinately recommend you get one) in September and they were cancerous, not to say your hubbys will be as Lympth nodes can be swollen for other reasons like a virus. Good Luck, and deemand that Chest xray, we got Pauls back the same day.
    Michelle

  29. #29
    Join Date
    Nov 2007
    Location
    Ontario, Canada
    Age
    31
    Posts
    112
    Quote Originally Posted by Rover
    As for the nodes, they do vary in size and location is important. The first line of effected nodes is usually the retroperitoneal lymph nodes. They are located in the back of the abdomen and are generally considered ok if they measure 1cm or less.

    Some TC travels more readily through the lymph vessels and can show up in the nodes. Other types, such as Embrional Carcinoma spreads more easily through blood vessels and can show up next in the lungs. This doesn’t mean there aren’t exceptions but there are general patterns.

    The Pathology report should clearly state if lymphovascular invasion was present. This is important in staging to help identify the likelihood of spread.

    As for some of your previous concerns, the effects (if any) of replacement therapy can range from fatigue if dose is too low to acne if dose is too high. “Dialing in” on the correct dose, for me, was easy and I experienced practically no side effects. Also, fertility after TC does vary but more often couples have little trouble. My youngest son is post TC and just turned one in October.

    Keep asking questions but do what you can to get copies of the reports. Your doc only knows ‘swollen nodes’ if he has a copy of the report. Sorry the Uro didn’t provide more info. It sounds like a good time for you to get a little pushy. A disconnect during the handoff from Uro to Onc is really frustrating but the Onc is the primary contact now. Collect the reports and bring them with you to see the onc.

    -chris
    I'm not sure how "swollen" the retro peritoneal lymph nodes were, I'm trying to get copies of the results. I know I'm re-asking this question, but I'm still unsure about it. Can the cancer spread to other parts of the body if the spermatic cord showed no cancer cells? The cancer has to go though this right?
    The Pathology report was only about the testicle, how would they know it went to the lymph nodes?
    Congrats Chris on your little one!

    Thanks for the info.

  30. #30
    Join Date
    Nov 2007
    Location
    Ontario, Canada
    Age
    31
    Posts
    112
    I can't believe this! I called the Urologist office all day and got a busy tone and then an answering machine after they closed!!! ERRRRR! So frustrating! I let a message and will continue to call all day tomorrow!!

    Hi Michelle, nice to meet a fellow Canadian, some one who knows how SLOW our health care system is! I wish I had more power when it comes to our system!

    Congrats on being pregnant!! So exciting! I can't wait to have another one!
    I will request them to send Evan for a PET scan when I finally get a hold of them!
    Did your husband do chemo? How is he now?

  31. #31
    Join Date
    Jul 2003
    Location
    Stratham, New Hampshire
    Age
    49
    Posts
    7,817
    Quote Originally Posted by EyesWideShut
    Can the cancer spread to other parts of the body if the spermatic cord showed no cancer cells?
    The short answer is "yes."
    Quote Originally Posted by EyesWideShut
    The Pathology report was only about the testicle, how would they know it went to the lymph nodes?
    They'd judge from the CT scan results.
    Scott, scott@tc-cancer.com
    right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


    This year, I recognize my 10th cancer anniversary by joining Team LIVESTRONG for RAGBRAI, a weeklong, 406-mile bicycle ride across Iowa.
    Your sponsorship donation funds LIVESTRONG Foundation services for people facing cancer today. Please give now!

  32. #32
    Sorry it has taken me so long to get back, but it seems the wonderful people here have answered your question. They would pick up the lympth nodes through CT/Pet Scans. If the lympth nodes were enlarged/swelled in away regarding my husband then his doctors would recommend treatment. Which was the case in my husbands cancer.

  33. #33
    Join Date
    Nov 2007
    Location
    Ontario, Canada
    Age
    31
    Posts
    112
    Thank you Scott, that was tough to hear, but I finally have a better outlook as to what is going on.
    Still waiting on the CT results

    Jilleighn, thanks for your response! I haven't expected a quick response from anyone, but they are super quick here! I know how busy life can be with a baby! So your husband had his lymph nodes removed? Then what kind of treatment did he have?

  34. #34
    No, Eric did not have to have his lympth nodes removed. There was only 1 that was questionable and they treated him with Chemo. We were told if it did not shrink after the chemo was through we would be in for removal. After he finished Chemo they did a chest xray every 3months and a ct scan every 6months. At his 2 year mark they stopped the chest xrays and now only do ct scans every 6months until his 3 or 5 year mark. I am still confused about this as I did not go to his last appointment with him. He said he think he is on the yearly now as he hit his 3 year mark, but might still be 6months til 5 years. He did 3 rounds of treatment. His cocktails were Bleo, Cisplatin and vp-16 (I believe that is what it is called, it also has another name).
    Last edited by Jilleighn; 12-11-07 at 09:49 AM.

  35. #35
    Join Date
    Nov 2007
    Location
    Ontario, Canada
    Age
    31
    Posts
    112
    Quote Originally Posted by Jilleighn
    No, Eric did not have to have his lympth nodes removed. There was only 1 that was questionable and they treated him with Chemo. We were told if it did not shrink after the chemo was through we would be in for removal. After he finished Chemo they did a chest xray every 3months and a ct scan every 6months. At his 2 year mark they stopped the chest xrays and now only do ct scans every 6months until his 3 or 5 year mark. I am still confused about this as I did not go to his last appointment with him. He said he think he is on the yearly now as he hit his 3 year mark, but might still be 6months til 5 years. He did 3 rounds of treatment. His cocktails were Bleo, Cisplatin and vp-16 (I believe that is what it is called, it also has another name).
    Thanks! I'm glad to hear your husband is at 3 years all clear!! Congrats! My husband is starting chemo in 2 weeks and this unknown territory is a bit scary! I hope is does well
    -Husband Evan diagnosed with non-seminoma 100%
    Embryonal Carcinoma-stage 2-----October 07
    -No blood markers before or after surgery
    -Right Orchiectomy w/implant ------Nov 5/07
    -implant infected-surgery to have it taken out----- Dec 30/07
    -started 3XBEP on ----January 7th 2008.....set back two weeks (not together) due to low white blood cell count
    -Finished 3X BEP on ----March 20/08
    -Still ALL CLEAR as of Jan '12
    - We have a 6 yr old dd prior to TC and a 18 month old son naturally conceived after TC.

  36. #36
    Join Date
    Dec 2007
    Location
    Alberta,Canada
    Age
    34
    Posts
    49

    lost you

    Hi there again.


    Sorry I did not reply for a while it was just I had lost you in all these threads and couldn't remember which thread I had first seen you on, but I am glad you posted a note on the caregivers one as you have joined the ranks now and everyone on all the threads will be supportive, but will for sure know what your going through there. To answer your question about how Pauls Chemo went, he did really well, the first two rounds although boring (bring a snacks and fun bag) at the hospital and long days (about 6-7hrs) he had no nausea and he was tired the week of treatments but quickly got back to normal the week or so after. The third round was harder though and even with the antinausea meds he felt yuck for about a week, but he also forgot to take some of the anit-nausea's till it was too late.

    Hope you get my replys on here and the BEP? you had and the ?s in the caregiver thread, I am thinking about you and I can just imagine how afraid you are, I was there and I had no idea what to expect and that was the worst part, so I hope I can reduce your fears a little. It was way better than what I thought but tough at the same time. But you will make it through!

    Take Care
    Michelle
    dx with TC June20/07, Left Orchiectomy June24/07, Pathology stg 1 Seminoma. Surveillance Dec/06-June/07. June14/07 Pregnant with our 3rd child.
    PET Sep14/07, Reocurrence Sept24/07.
    3xBEP finished Nov29/07.
    Dec14/07Got our Christmas miracle and got the all clear!-Back on Surveillance

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