Penile Cancer Support

kathie1963
kathie1963 Member Posts: 9
edited March 2014 in Rare and Other Cancers #1
Hi.
I have posted under the Penile cancer link.My 45 year old boyfriend & high schhol sweetheart,was recently diagnosed with squamous cell cancer & I have decided to start a group on yahoo on this topic,as there does not seem to be much out there as far as contacting others with this.We are currently waiting on x-ray results & a Ct of Bladder & Moh's surgery has been scheduled for Dec 5th.Would like to hear from anyone else dealing with this.My email is sayno2shoes@yahoo.com-If any one would like to join,the link is as below...
http://health.groups.yahoo.com/group/penilecancersupport/
Thank you..Kathie & Don...N.W.Indiana

Comments

  • sihevensun
    sihevensun Member Posts: 1
    #2
    Penile Cancer Support
    Hi kathie,

    My father was diagnosed of penile cancer too last year Dec 2007 (Stage 3). It is now September 2008 and he is not getting very well with the chemotheraphy ( He had undergone 6 months chemo sessions ). He was supposed to undergo radiation theraphy and medical re-evaluation (lab test and CT Scans to determine if the stage has escalated but we have not been able to reach that stage.. as he is now very weak.. He is experiencing hallucinations, he no longer recognized relatives, family members except my mother.. His doctor isn't very much of a help because whenever we admit him to the hospital checked by her oncologist, the oncologist merely presents prescription for morphine and other pain killers and didn't even bother to tell us what to expect for those medications or how do we deal with my father psychologically/emotionally.. to help alleviate his cancer pain.. I guess we have to get the best "concerned" oncologist in the country.. Unfortunately, this penile cancer is very rare.. so i am also trying to search the web and get help from other's experiences as well or if they have gotten the best oncologist there is.. He is bed ridden now, unable to speak and very weak.. He is scheduled to be checked by his oncologist tomorrow and hopefully the doctor would really really help him live...
    If you got news/research told by others who had this penile cancer.. please spread the word...

    Thanks.. and stay hoping for the best.. God Bless...
  • reynaldo_2011
    reynaldo_2011 Member Posts: 7
    #3
    Penile Cancer Support
    Hi Kathie,

    I was diagnosed with squamous cell cancer Stage 3, had a radical penectomy to remove it all. Now discussions between two doctors whether to consider a seminal lymph node dissection or radiation/chemo. Leaning toward seminal lymph node dissection.
  • kerryhj
    kerryhj Member Posts: 1
    #4
    reynaldo_2011 said:

    Penile Cancer Support
    Hi Kathie,

    I was diagnosed with squamous cell cancer Stage 3, had a radical penectomy to remove it all. Now discussions between two doctors whether to consider a seminal lymph node dissection or radiation/chemo. Leaning toward seminal lymph node dissection.

    penile cancer
    HI

    My father was diagnosed with penile cancer and also had a radical penectomy and they removed all the lymph nodes,

    He is now in remission and doing quite well but he has terrible swelling in his legs and feet
    i would like to know if anyone has any advice that would help to ease the swelling.

    thanks
  • reynaldo_2011
    reynaldo_2011 Member Posts: 7
    #5
    kerryhj said:

    penile cancer
    HI

    My father was diagnosed with penile cancer and also had a radical penectomy and they removed all the lymph nodes,

    He is now in remission and doing quite well but he has terrible swelling in his legs and feet
    i would like to know if anyone has any advice that would help to ease the swelling.

    thanks

    penile cancer update
    Contacted my surgeon and told him about the decision I had to make. He suggested a third alternative, my favorite, 'Wait and See'. So I am scheduled for another cat scan in January and will see if the lymph nodes are still unaffected. best wishes to all.
  • reynaldo_2011
    reynaldo_2011 Member Posts: 7
    #6
    reynaldo_2011 said:

    penile cancer update
    Contacted my surgeon and told him about the decision I had to make. He suggested a third alternative, my favorite, 'Wait and See'. So I am scheduled for another cat scan in January and will see if the lymph nodes are still unaffected. best wishes to all.

    Penile Cancer Update
    Wanted to let you all know. My "Wait and See" decision proved to be a good one. My last cat scan in January (last month) showed that my lymph nodes had continued to maintain or slightly shrink. Doctor recommends a 6-month rescan to check.

    While waiting for the scan, after drinking my mocha bariums and receiving my IV, I found a journal in the waiting room which patients were encouraged to write or read. Found some very great writings there. Lots of encouragement in those writings.

    Continued best wishes to all.
  • diaphanous
    diaphanous Member Posts: 3 Member
    #7
    squamous cell carcinoma

    Hi there,...my son just had a partial penectomy at Princess Margaret Hospital in Toronto, Canada. He has had a bi-lateral groin dissection to remove what they called the highway to the other organs for prevention of the cancer. He has gone through chemotherapy and had the maximum radiation. My son is only 35 and has been battling this since he was 31. He has had great doctors and nurses care but we don't know how this will affect him emotionally in the future. There is very little known about this kind of cancer and how to treat it. Hopefully,  more public awareness and knowledge of this cancer will bring a cure in the not too distant future.

     

     

  • diaphanous
    diaphanous Member Posts: 3 Member
    #8
    reynaldo_2011 said:

    Penile Cancer Support
    Hi Kathie,

    I was diagnosed with squamous cell cancer Stage 3, had a radical penectomy to remove it all. Now discussions between two doctors whether to consider a seminal lymph node dissection or radiation/chemo. Leaning toward seminal lymph node dissection.

    seminal lymph node dissection

    I hope this finds you in better health and in remission. My son had a bi-lateral groin dissection which I'm pretty sure is the same as the seminal lymph node dissection that you refer to. He finally had to have the partial penectomy but seems to be doing O'kay for now. He is back at work after only a short period of time off for the operation. I'm just worried that he hasn't taken enough time to actually deal with the adjustment. How are you doing? I've had a couple of crackpots send me e-mails which I'm kind of sick about and have blocked those senders from my mailbox. I would love to hear from you and to know how they are treating you.

  • Elderwise
    Elderwise Member Posts: 2 Member
    #9
    reynaldo_2011 said:

    Penile Cancer Update
    Wanted to let you all know. My "Wait and See" decision proved to be a good one. My last cat scan in January (last month) showed that my lymph nodes had continued to maintain or slightly shrink. Doctor recommends a 6-month rescan to check.

    While waiting for the scan, after drinking my mocha bariums and receiving my IV, I found a journal in the waiting room which patients were encouraged to write or read. Found some very great writings there. Lots of encouragement in those writings.

    Continued best wishes to all.

    Thanks so much for sharing

    Thanks so much for sharing your experience.  It is hard to find other penile cancer survivors to talk to.  I was diagnosed with penile cancer (Squamous Cell Carcinoma) in January of this year and had my glans removed just last month.   Although the tissue surrounding the tumor looked clean, the tumor was deep enough (T1b, stage 2) that my surgeon is worried that some cancer cells may have migrated and is recommending removing all the lymph nodes in my groin as a preventative measure.  However I am worried about chronic lymphadema affecting the quality of my life so am exploring other options.  A recent PET scan showed no signs of cancer clusters but I am told that individual cells could still be there.   I am curious to see if your follow-up scans have continued to confirm the wisdom of your "Wait and See" decision.

  • suedrink
    suedrink Member Posts: 4 Member
    #10
    MD Anderson in Houston best place to go for Penile Cancer

    My husband was treated twice for penile cancer stage 0.  Surgeon was confident that there were clear margins and no need to worry after each surgery.  My husband was checked regularly by a urologist and no signs of cancer.  He was injured by a dog jumping on him.  The injury did not heal.  A CT scan revealed enlarged nodes in the groin.  A biopsy showed cancer.  After much research we found that MD Anderson in Houston was the hospital that saw lots of patients with penile cancer.  We met with the oncologist Dr. Pegliaro and the surgeon Dr. Pettaway.  They rediagnosed the cancer as urethral.  This was important in choosing the correct chemo.  MD Anderson has developed chemo regimes for both penile and urethral in the past couple of years. 

    My husband's nodes have shrunk from 4 cm to 1 cm or normal...still some cancer in urethra.  He has one more of 6 chemos to complete next week.  Then back to MD Anderson for presurgical evaluation.  Because the cancer has "melted away" he is no a candidate for surgery....before this the side effects...swelling...etc would have been bad.  MD does have minimally invasive surgery to remove nodes...hope he is now a candidate for that.

    Swelling in the legs is lymphedema...when nodes are removed...drainage is compromised.  There are lymphedema certified specialist who can do lymph drainage and then fit him for compression socks to keep the swelling down.

    Good luck all.  Cancer is the devil.  Penile cancer is just so unfair.  There are only about 1500 cases a year in the US.

  • suedrink
    suedrink Member Posts: 4 Member
    #11
    MD Anderson in Houston best place to go for Penile Cancer

    I erased the duplicate posting.  sorry!

  • Elderwise
    Elderwise Member Posts: 2 Member
    #12
    diaphanous said:

    seminal lymph node dissection

    I hope this finds you in better health and in remission. My son had a bi-lateral groin dissection which I'm pretty sure is the same as the seminal lymph node dissection that you refer to. He finally had to have the partial penectomy but seems to be doing O'kay for now. He is back at work after only a short period of time off for the operation. I'm just worried that he hasn't taken enough time to actually deal with the adjustment. How are you doing? I've had a couple of crackpots send me e-mails which I'm kind of sick about and have blocked those senders from my mailbox. I would love to hear from you and to know how they are treating you.

    Sorry for the long delay in

    Sorry for the long delay in responding.  Following the partial pendectomy, I elected to have the seminal lymph node dissection recommended by my surgeon as I felt I would live in a state of constant anxiety if I didn't.  The surgery was April 12th and am pleased to report that the lymph tissue was found to be free of cancer cells.  However I am dealing with some post-surgery complications including a recent life-threatening systemic infection from the lymph drains and trying to prevent long-term lymphadema.  I am 74 so although I am still getting used to the partial penectomy, it must be especially hard for someone younger.  I hope you son is doing OK.  Sometimes getting back to a "normal" routine makes the adjustment easier.

  • freddy beach
    freddy beach Member Posts: 18
    #13
    How the internet saved me.....I hope.

    I got diagnosed 2 weeks ago, get operation july 8, 2013. I pushed for the biopsy, found out I was a positive in various risk factors. I have 8 year old daughter, I need her and she needs me. I don't need a penis as much. I hope it mostly stays on me but I want the cancer out of me. Got 90% survival chance as of now, if it hits lymph system got 90% chance of dying. I am scared.

  • freddy beach
    freddy beach Member Posts: 18
    #14
    Elderwise said:

    Sorry for the long delay in

    Sorry for the long delay in responding.  Following the partial pendectomy, I elected to have the seminal lymph node dissection recommended by my surgeon as I felt I would live in a state of constant anxiety if I didn't.  The surgery was April 12th and am pleased to report that the lymph tissue was found to be free of cancer cells.  However I am dealing with some post-surgery complications including a recent life-threatening systemic infection from the lymph drains and trying to prevent long-term lymphadema.  I am 74 so although I am still getting used to the partial penectomy, it must be especially hard for someone younger.  I hope you son is doing OK.  Sometimes getting back to a "normal" routine makes the adjustment easier.

    Can we talk

    I am 50, i got penile cancer, get operation july 8, a partial. I am scared.

     

  • reynaldo_2011
    reynaldo_2011 Member Posts: 7
    #15
    Elderwise said:

    Thanks so much for sharing

    Thanks so much for sharing your experience.  It is hard to find other penile cancer survivors to talk to.  I was diagnosed with penile cancer (Squamous Cell Carcinoma) in January of this year and had my glans removed just last month.   Although the tissue surrounding the tumor looked clean, the tumor was deep enough (T1b, stage 2) that my surgeon is worried that some cancer cells may have migrated and is recommending removing all the lymph nodes in my groin as a preventative measure.  However I am worried about chronic lymphadema affecting the quality of my life so am exploring other options.  A recent PET scan showed no signs of cancer clusters but I am told that individual cells could still be there.   I am curious to see if your follow-up scans have continued to confirm the wisdom of your "Wait and See" decision.

    squamous cell carcinoma -penile cancer

    My scans have been clean, I am on a once-per-year CT scan schedule.  I am glad for my "Wait and See" decision, but I was cautious, I will say.  Good Luck, Elderwise.

  • reynaldo_2011
    reynaldo_2011 Member Posts: 7
    #16
    freddy beach said:

    How the internet saved me.....I hope.

    I got diagnosed 2 weeks ago, get operation july 8, 2013. I pushed for the biopsy, found out I was a positive in various risk factors. I have 8 year old daughter, I need her and she needs me. I don't need a penis as much. I hope it mostly stays on me but I want the cancer out of me. Got 90% survival chance as of now, if it hits lymph system got 90% chance of dying. I am scared.

    Freddy, how did things go?

    I saw your posts, please feel free to write to us here on this site.

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