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RetroP Lymph Node Disection

TScholl
Posts: 2
Joined: Jul 2004

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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jnigra
Posts: 14
Joined: Aug 2003

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
Posts: 1
Joined: Jul 2004

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.

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jnigra
Posts: 14
Joined: Aug 2003

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
Posts: 2
Joined: Jul 2004

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
Posts: 1
Joined: Jul 2004

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
Posts: 14
Joined: Jun 2009

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
Posts: 1
Joined: Jun 2009

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
Posts: 14
Joined: Jun 2009

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's picture
redheadbass2
Posts: 14
Joined: Feb 2007

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
Posts: 14
Joined: Jun 2009

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

redheadbass2's picture
redheadbass2
Posts: 14
Joined: Feb 2007

I am so glad! Take Care!

debratrotter (not verified)

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's picture
redheadbass2
Posts: 14
Joined: Feb 2007

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's picture
redheadbass2
Posts: 14
Joined: Feb 2007

Have you called your local American Cancer Society: 1-800-ACS(227)-2345?

mrwilli
Posts: 1
Joined: Aug 2009

TScholl your case very rare, to you has carried more than to my friend

lineman's picture
lineman
Posts: 14
Joined: Jul 2009

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?

HeartofSoul's picture
HeartofSoul
Posts: 732
Joined: Dec 2009

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.

jhsmith400
Posts: 1
Joined: Sep 2010

hi

Davepet's picture
Davepet
Posts: 92
Joined: Dec 2009

Hello, jhsmith, are you a TC survivor?

SonnyDays
Posts: 1
Joined: Oct 2010

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.

Davepet's picture
Davepet
Posts: 92
Joined: Dec 2009

Well, with some types & stages of TC, the RPLND is indeed a smart thing to do, so do not dismiss it as unneeded in every case. Find out what the standards are for the kind & stage of your TC & use that to guide you.

Dave

Jml87
Posts: 2
Joined: May 2012

I just got mine removed by a so called great surgeon at mass general im 25.yrs old and I cant even get it up anymore or ejaculate my life sucks now I might as well be dead my manhood is gone cuz this surgey and after they did it.the tumors werent even cancehrous great huh now I have to go the rest of my miserable life without ever even getting aroused or a boner and having sex awesome my advice would.be to.get get a 2nd3rd and a 4th opinion hope everythong goea well im like a robot now after this surgery!!!

daqueenofsheba
Posts: 1
Joined: Mar 2012

Hi,

My boyfriend got diagnosed a month ago with stage 3 testicular cancer, 95% teratoma. The spread is to the back of his abdomen where he has a pretty large tumor and from what the main oncologist says, he has 50-60 tumors in his chest. 2 days after the diagnosis, he had the surgery and out when one testicle. Then, they rapidly started him on BEP chemo. He is responding and his blood markers have dropped, his tumors are shrinking. However, we found several blood clots and he got treated today with that. The oncologist from our perspective has not had a really optimistic attitude about his prognosis/future and I am in search of a better oncologist. My question is, what is the Einhorn Series Chemo that you went through exactly? Our oncologist has now contacted Einhorn because of the difficulty and complexity of my boyfriend's state. Please, any words of wisdom and hope...is needed.

sophiaandre
Posts: 1
Joined: May 2013

Thank you very much !!!...

Every contribution is very valuable for us.

Sophia from France.

Excuse my english

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