RetroP Lymph Node Disection

TScholl
TScholl Member Posts: 2
edited March 2014 in Testicular Cancer #1
When my cancer was diagnosed I was in last stage with the cancer spread from one testicle to abdomen and throughout both lungs. After testicle removal and 4 rounds of the Einhorn Series chemo, all signs of cancer were gone. Urologists/oncologists wanted to remove all the lymph nodes "to err on the side of caution." But from what I was reading in medical library, there seemed no better survival rate for those who had the lymph node removal. I got a second opinion from an oncologist who contacted the University of Indiana on my behalf. I was advised the lymph node disection would not offer me any real benefit, while almost certainly preventing me from ever ejaculating again. It would seem there are quality of life issues with this surgery, as well as cost/benefit issues that some doctors will be happy to make for you if one does not take the responsibility to make them for themselves, and to get second and third opinion if necessary. It was 1983 and I elected to forego the lymph node disection. It was a good decision for me.
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Comments

  • jnigra
    jnigra Member Posts: 14
    #2
    Hi TSholl, my first question is why are you providing this information for us 10 years later from your original surgery. However, if I am reading this correctly I'm glad that you made the right choice. However it is my understanding that now RLPND surgery is a nerve sparing surgery which will allow male cancer patients a higher percentage of recovery and ability to ejaculate normally. I wouldn't want this information to discourage patients that need to have the surgery not to have it due to the possibility of losing one's ability to ejaculate versus a chance at the cancer coming back.
  • dorowat
    dorowat Member Posts: 1
    #3
    jnigra said:

    Hi TSholl, my first question is why are you providing this information for us 10 years later from your original surgery. However, if I am reading this correctly I'm glad that you made the right choice. However it is my understanding that now RLPND surgery is a nerve sparing surgery which will allow male cancer patients a higher percentage of recovery and ability to ejaculate normally. I wouldn't want this information to discourage patients that need to have the surgery not to have it due to the possibility of losing one's ability to ejaculate versus a chance at the cancer coming back.

    As I read the original comment the writer advises getting a second and third medical opinion, not making a decision on his advice. It would seem to me if the surgery was possible medically unnecessary for some patients then, it could still be so today, and the extra opinions are well advised. Even if the surgery has finally mastered the saving of the nerves, that would not justify it if it does not offer any real benefit to a patient. The writer noted his advice came from University of Indiana where much testicular cancer research is done. Your concern seems overly cautious, erring on the side of less information to the patient. The more information a patient has to consider, the better his decision will be.
  • jnigra
    jnigra Member Posts: 14
    #4
    dorowat said:

    As I read the original comment the writer advises getting a second and third medical opinion, not making a decision on his advice. It would seem to me if the surgery was possible medically unnecessary for some patients then, it could still be so today, and the extra opinions are well advised. Even if the surgery has finally mastered the saving of the nerves, that would not justify it if it does not offer any real benefit to a patient. The writer noted his advice came from University of Indiana where much testicular cancer research is done. Your concern seems overly cautious, erring on the side of less information to the patient. The more information a patient has to consider, the better his decision will be.

    You are correct that the original writer suggests getting a second and or third opinion. However it does not mention that in 1983 the RLPND surgery was not the same surgery that surgeons are utilizing today, thus saving the nerves. If I didn't know about the nerve sparing techniques used today and was given the option of RLPND vs Chemo I may chose Chemo as a way of preserving my ability to father children. Chemo is a much more difficult proceedure during and recover time than that of patients that under go RLPND alone. Therefore if given the choice of one or the other with pros and cons and being the fact that I am young and still wanting to have children I obviously would opt for the Chemo period. With that said, it is a patients own decision on which treatment they choose and the more information the better. I just wanted to make sure that readers were aware that todays surgery is not the same surgery that occured in 1983.
  • TScholl
    TScholl Member Posts: 2
    #5
    jnigra said:

    You are correct that the original writer suggests getting a second and or third opinion. However it does not mention that in 1983 the RLPND surgery was not the same surgery that surgeons are utilizing today, thus saving the nerves. If I didn't know about the nerve sparing techniques used today and was given the option of RLPND vs Chemo I may chose Chemo as a way of preserving my ability to father children. Chemo is a much more difficult proceedure during and recover time than that of patients that under go RLPND alone. Therefore if given the choice of one or the other with pros and cons and being the fact that I am young and still wanting to have children I obviously would opt for the Chemo period. With that said, it is a patients own decision on which treatment they choose and the more information the better. I just wanted to make sure that readers were aware that todays surgery is not the same surgery that occured in 1983.

    I was never presented with a choice between RPLND and chemotherapy, and I have never heard of anyone having that choice presented to them. The RPLND, as I mentioned in my original message was presented to me post surgery and chemotherapy. It was offered as a further protection against the cancer's return. The medical journals I consulted cited no better survival rate among patients who had the surgery and my informed second opinion confirmed this conclusion. No matter how well the surgery now is able to preserve the nerves (and I am simply accepting your conclusion that it does)this has no bearing as to whether this surgery accomplishes any useful cancer reoccurance prevention for the patient. There may be some who would benefit from it, however clearly this surgery is not necessarily warranted as often as it is recommended. I would have never known this had not the medical journals not indicated this conclusion as well as the second opinion I requested.
  • maeek
    maeek Member Posts: 1
    #6
    TScholl said:

    I was never presented with a choice between RPLND and chemotherapy, and I have never heard of anyone having that choice presented to them. The RPLND, as I mentioned in my original message was presented to me post surgery and chemotherapy. It was offered as a further protection against the cancer's return. The medical journals I consulted cited no better survival rate among patients who had the surgery and my informed second opinion confirmed this conclusion. No matter how well the surgery now is able to preserve the nerves (and I am simply accepting your conclusion that it does)this has no bearing as to whether this surgery accomplishes any useful cancer reoccurance prevention for the patient. There may be some who would benefit from it, however clearly this surgery is not necessarily warranted as often as it is recommended. I would have never known this had not the medical journals not indicated this conclusion as well as the second opinion I requested.

    After the biopsy of my testicle, it was recommended that I have the RPLD done on the left side. I was also informed that there would be a 1% chance of me losing my ability to ejaculate. The LPND was done, cancer was found in one of the lymph nodes, and I did lose my ability to ejaculate. I have also been dissected from hips to ribs. I have a scar that looks like a giant worm, from my ribs to my pelvis. I have one testicle. I am in my early 30s and am single and have never wanted anything more than my own baby girl one day. In the doctors eyes, I am a fortunate "survivor" because they do not know of the hell I have to either live with or block out of my mind even a year later today.
  • scoffey
    scoffey Member Posts: 14
    #7
    lymph node removal
    I've read your comments, several years after they've been posted. My son is also facing the issues related to lymph node removal. He's single and and just recovering from surgery, guess time will tell as far as having kids and body functions, any suggestions. anybody?
  • oldvillage
    oldvillage Member Posts: 1
    #8
    scoffey said:

    lymph node removal
    I've read your comments, several years after they've been posted. My son is also facing the issues related to lymph node removal. He's single and and just recovering from surgery, guess time will tell as far as having kids and body functions, any suggestions. anybody?

    lymph node removal
    I am a survivor of testicular cancer from 1982. I had surgery to remove my left testicle and was then told that I needed a lymph node resection. I was told that the resection was a 'must do' (not optional) and consequently had the procedure. The scar I have from surgery starts under my left bicep then goes out around toward my sternum and then goes down around my belly button and down to below my waist line. My point in saying this is to emphasize that this was major surgery.

    In addition to loosing the ability to ejaculate, I also suffered severe nerve and muscle damage that has continued to worsen as I have aged. I am now permanently disabled because of complications from this surgery so please have your son do himself a big favor and get a few opinions before having this done to be sure it is really necessary and that all alternatives are considered.
  • scoffey
    scoffey Member Posts: 14
    #9
    lymph removal
    Unfortunatly, we were not given options, they said that he needed to do this. His incision is about 8 inches, and he's ready to be discharged from hostpital tomorrow. Dr.'s said that ina couple years he should be back to normal, he stored semen ina sperm bank before surgery, but docs also say he might be fertile also ina couple years too.
  • redheadbass2
    redheadbass2 Member Posts: 14
    #10
    scoffey said:

    lymph removal
    Unfortunatly, we were not given options, they said that he needed to do this. His incision is about 8 inches, and he's ready to be discharged from hostpital tomorrow. Dr.'s said that ina couple years he should be back to normal, he stored semen ina sperm bank before surgery, but docs also say he might be fertile also ina couple years too.

    Success
    Hi!

    I just wanted to write you a note to say that I have the "8 inch scar" too, and my wife and I had a baby 1 year later.

    It sounds like ya'll have taken care of business--but, don't give up hope!
  • scoffey
    scoffey Member Posts: 14
    #11
    lymph node removal
    Thanx for the encourage ment and the quick response rehead! This really helps.
  • Unknown
    Unknown
    #12
    Does anybody know what to
    Does anybody know what to expect on Lymph node removal? And how long does the operation takes? My aunt just found out she had NHL.
  • redheadbass2
    redheadbass2 Member Posts: 14
    #13
    scoffey said:

    lymph node removal
    Thanx for the encourage ment and the quick response rehead! This really helps.

    I am so glad! Take Care!
    I am so glad! Take Care!
  • redheadbass2
    redheadbass2 Member Posts: 14
    #14
    unknown said:

    Does anybody know what to
    Does anybody know what to expect on Lymph node removal? And how long does the operation takes? My aunt just found out she had NHL.

    thought on the subject
    Every cancer in Every Person is different. The way my Discussion Board is being viewed is that this is the Testicular Cancer Discussion Board. I had Testicular Cancer so, my expericence with that is all that I can speak to. There is a 'Lymphoma (Hodgkin and Non-Hodgkin) Discussion Board.

    However, I would also recommend a resource I found through cancer.org :
    https://www.cancer.nexcura.com/Secure/InterfaceSecure.asp?CB=281

    Once you register for the NexProfiler--you can fill out the questionnaire to specifically research Treatment Options for the exact kind of NHL, and get Side Effects Information.
  • redheadbass2
    redheadbass2 Member Posts: 14
    #15
    unknown said:

    Does anybody know what to
    Does anybody know what to expect on Lymph node removal? And how long does the operation takes? My aunt just found out she had NHL.

    Also,
    Have you called your local American Cancer Society: 1-800-ACS(227)-2345?
  • mrwilli
    mrwilli Member Posts: 1
    #16
    hi
    TScholl your case very rare, to you has carried more than to my friend
  • lineman
    lineman Member Posts: 14
    #17
    you are wrong and i am proof
    I went through 3xBEP and had some lymph nodes at about 1cm. it takes 2cm to be consitered possibly cancerous. so my dr said no need for surgery. i recieved a second opinion from a very good cancer hospital in florida. he said that i should have it done. the reason is because non senoma cancer can have teratoma in it. a cancer that is not detectable by cat scans or any tests. i had the surgery done. come to find out 9 of my lymph nodes had teratoma in them. It is a very good thing that i had the surgery! when you have stage two testicular cancer, there is a 30% chance that you will have teratoma in your lymph nodes. one in three people. do you think you are that lucky?
  • jhsmith400
    jhsmith400 Member Posts: 1
    #18
    hi
    hi
  • Davepet
    Davepet Member Posts: 92
    #19
    jhsmith400 said:

    hi
    hi

    Hello, jhsmith, are you a TC
    Hello, jhsmith, are you a TC survivor?
  • HeartofSoul
    HeartofSoul Member Posts: 729 Member
    #20
    lineman said:

    you are wrong and i am proof
    I went through 3xBEP and had some lymph nodes at about 1cm. it takes 2cm to be consitered possibly cancerous. so my dr said no need for surgery. i recieved a second opinion from a very good cancer hospital in florida. he said that i should have it done. the reason is because non senoma cancer can have teratoma in it. a cancer that is not detectable by cat scans or any tests. i had the surgery done. come to find out 9 of my lymph nodes had teratoma in them. It is a very good thing that i had the surgery! when you have stage two testicular cancer, there is a 30% chance that you will have teratoma in your lymph nodes. one in three people. do you think you are that lucky?

    it takes 2cm to be
    it takes 2cm to be considered possibly cancerous.???????????????????????????????

    ever hear of mirroscopic cancer cells? thats all it takes for the tumor to grow and spread. The time it takes can vary from months to years. non seminoma testicular is as aggressive as they come but one of the most treatable even in stage 3.
  • SonnyDays
    SonnyDays Member Posts: 1
    #21
    Interesting...
    My husband, who owns a atlanta roofing company, was recently diagnosed with testicular cancer also. He was told by a doctor recently to have his lymphs removed, but we both agreed that this was a scary choice to make. I kept telling him to get a second opinion, but he hasn't listened. I think I'm going to share your story with him.

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