Husband of someone with Stage III Bartholins Cancer Squamous Cell Carcinoma

ppaseka
ppaseka Member Posts: 70
edited October 2011 in Gynecological Cancers (other than ovarian and uterine) #1
Can anybody give my wife any input as to what we are about to endure with surgery to remove the cancer from her pelvic region. Our surgery is Nov, 8 and we are having a lot of anxiety. They are going to do a radical vulvectomy and remove her lymph nodes in both sides of her groin. Also what are the recovery times etc. We meet with the surgeons on Monday to discuss what they will be removing and what they will be rocnstructing. She is 43 years old and in great health.

Any input would be greatly appreciated.

Comments

  • funbeadgirl
    funbeadgirl Member Posts: 181 Member
    #2
    a few thoughts...
    Sorry to hear what you and your wife will be going through.My cancer was a little different, so what I am about to suggest may not apply, but it is worth a mention to doctor. I had vulvar adenocarcinoma and was planned to have lymph node dissection also, but was against it because of side effects. I asked my surgeon about doing a Sentinel Node Biopsy. Not all surgeons are experienced with this, thankfully mine was, so I only had 5 nodes removed from the side where cancer originated and only 1 was positive. Every patient is different and cancer is different in each patient, but it is worth asking about. Your wife should do well in any case, she is young, I was 55 and did well with the surgery and 28 radiation treatments. I too had a partial radical vulvectomy,I was up and down stairs next day doing laundry, although very slow, but if she does what docs say, she will recover. These vulvar diseases are very rare, and no one wants to talk about them, so hang in there, you are not alone. More women and men need to be educated about this ever growing cancer.I wish you both the best, for a quick recovery and a long life together.
  • ppaseka
    ppaseka Member Posts: 70
    #3
    funbeadgirl said:

    a few thoughts...
    Sorry to hear what you and your wife will be going through.My cancer was a little different, so what I am about to suggest may not apply, but it is worth a mention to doctor. I had vulvar adenocarcinoma and was planned to have lymph node dissection also, but was against it because of side effects. I asked my surgeon about doing a Sentinel Node Biopsy. Not all surgeons are experienced with this, thankfully mine was, so I only had 5 nodes removed from the side where cancer originated and only 1 was positive. Every patient is different and cancer is different in each patient, but it is worth asking about. Your wife should do well in any case, she is young, I was 55 and did well with the surgery and 28 radiation treatments. I too had a partial radical vulvectomy,I was up and down stairs next day doing laundry, although very slow, but if she does what docs say, she will recover. These vulvar diseases are very rare, and no one wants to talk about them, so hang in there, you are not alone. More women and men need to be educated about this ever growing cancer.I wish you both the best, for a quick recovery and a long life together.

    Thank you so much for your
    Thank you so much for your comments. We are going to IU Simon Cancer Center in Indianapolis, IN We were only diagnosed on Oct. 12 with metasized squamous cell carcinoma, which was discovered during a biopsy of a lymph node in her groin, without a primary site. By the grace of God and the casual mention of this diagnoses to a friend, we ended up in IU. We were not going to even have the results of her colonoscopy back until Nov. 14, had we stayed with our local health network. We were streamlined into IU Gynecology Oncology department with out a referal because of this friends connection to IU Medical and Simon Cancer Center. We are months ahead in this battle and my wife is a very strong and strong willed person.
  • funbeadgirl
    funbeadgirl Member Posts: 181 Member
    #4
    ppaseka said:

    Thank you so much for your
    Thank you so much for your comments. We are going to IU Simon Cancer Center in Indianapolis, IN We were only diagnosed on Oct. 12 with metasized squamous cell carcinoma, which was discovered during a biopsy of a lymph node in her groin, without a primary site. By the grace of God and the casual mention of this diagnoses to a friend, we ended up in IU. We were not going to even have the results of her colonoscopy back until Nov. 14, had we stayed with our local health network. We were streamlined into IU Gynecology Oncology department with out a referal because of this friends connection to IU Medical and Simon Cancer Center. We are months ahead in this battle and my wife is a very strong and strong willed person.

    Strength and strong willed is good
    I am so happy to hear that you were moved along with this, so many times women are made to wait and then treatment becomes more involved. I am sorry that is has metastazised, hopefully they will find primary site and be able to deal with all of it at same time. The sooner the better.
    My vulvar adenocarcinoma was a primary site, although they looked other places first, since it was very rare. Just 2 months ago I had a surgery to remove a 'lesion' in my right femur, well it turned out to be a metastases of the original vulvar cancer in 2009, so not good news.None of my docs had ever seen an adeno VC go to the bone, actually I did find a doc that had seen a squamous vc go to the bone, but that is a different cell type and didn't help me at all. I just finished 18 radiation treatments and start chemo in 2 weeks. I too am a very strong willed person, and basically a healthy person other than cancer, I know I will get through this and I have complete trust in my docs, they are a wonderful team and I know they are very concerned about helping me.
    Sometimes it is 'easier' ( I mean this very loosely) being the patient because all the attention is on you...but how are YOU doing with what is happening to your wife? It has been very hard on my husband, but in a silent way, it is on his mind all the time. Of course, he wants to fix it and can't but is my rock through this all. I know it bothers him more than he tells me.Motivational speaker and disabled athlete Roger Crawford said..."Being challenged in life is inevitable, being deflated by it is optional", it sounds like your wife has a very positive attitude and very determined to deal with what she has before her, both of you hang in there and take each doctor appointment, every test, scan, etc., one at a time. Find time to laugh, even give yourself a day to not say the word 'cancer'. That may be hard to do right now, since you are in the beginning of a series of all these things, and your life will be dictated by the appointments...but remember cancer does not define your wife, it just happens to be something that happened to her, it is not who she is.I will be thinking of both of you, I hope tests will reveal primary site easily and that treatment will be started so you can get on with your life.I live just above you in Wisconsin, all my docs are from Milwaukee area, although I live 30 miles outside of city.
  • ppaseka
    ppaseka Member Posts: 70
    #5
    funbeadgirl said:

    Strength and strong willed is good
    I am so happy to hear that you were moved along with this, so many times women are made to wait and then treatment becomes more involved. I am sorry that is has metastazised, hopefully they will find primary site and be able to deal with all of it at same time. The sooner the better.
    My vulvar adenocarcinoma was a primary site, although they looked other places first, since it was very rare. Just 2 months ago I had a surgery to remove a 'lesion' in my right femur, well it turned out to be a metastases of the original vulvar cancer in 2009, so not good news.None of my docs had ever seen an adeno VC go to the bone, actually I did find a doc that had seen a squamous vc go to the bone, but that is a different cell type and didn't help me at all. I just finished 18 radiation treatments and start chemo in 2 weeks. I too am a very strong willed person, and basically a healthy person other than cancer, I know I will get through this and I have complete trust in my docs, they are a wonderful team and I know they are very concerned about helping me.
    Sometimes it is 'easier' ( I mean this very loosely) being the patient because all the attention is on you...but how are YOU doing with what is happening to your wife? It has been very hard on my husband, but in a silent way, it is on his mind all the time. Of course, he wants to fix it and can't but is my rock through this all. I know it bothers him more than he tells me.Motivational speaker and disabled athlete Roger Crawford said..."Being challenged in life is inevitable, being deflated by it is optional", it sounds like your wife has a very positive attitude and very determined to deal with what she has before her, both of you hang in there and take each doctor appointment, every test, scan, etc., one at a time. Find time to laugh, even give yourself a day to not say the word 'cancer'. That may be hard to do right now, since you are in the beginning of a series of all these things, and your life will be dictated by the appointments...but remember cancer does not define your wife, it just happens to be something that happened to her, it is not who she is.I will be thinking of both of you, I hope tests will reveal primary site easily and that treatment will be started so you can get on with your life.I live just above you in Wisconsin, all my docs are from Milwaukee area, although I live 30 miles outside of city.

    Thank you
    The primary site is the Bartholins Glands. No symptoms, no nothing. Discovered the swollen lympth node. It took two months from date of first exam to diagnoses.
  • ppaseka
    ppaseka Member Posts: 70
    #6
    ppaseka said:

    Thank you
    The primary site is the Bartholins Glands. No symptoms, no nothing. Discovered the swollen lympth node. It took two months from date of first exam to diagnoses.

    Follow up
    My wife just finished her treatments on Wednesday. All in all she says it wasn't as bad as she had anticipated. Her first post treatment scan will be towed the end of June. It is hard to believe that it has been six already since she was diagnosed.
  • ppaseka
    ppaseka Member Posts: 70
    #7
    ppaseka said:

    Follow up
    My wife just finished her treatments on Wednesday. All in all she says it wasn't as bad as she had anticipated. Her first post treatment scan will be towed the end of June. It is hard to believe that it has been six already since she was diagnosed.

    Six Months
    It has been six months today since my widest surgery. It is amazing how fast time goes by. It seems a lifetime ago, but feels like yesterday. She has been through surgery, 28 radiation treatments, 9 chemo treatments with cisplatin and three oral treatments with Xeloda. She has battled cellulitis twice (currently) and lymphadema in her legs and belly. With the exception of five hours in surgery and the 25 minutes each day during radiation, she has never been alone. I have been by her side through it all. She is the strongest, most amazing person I have ever known.
  • ppaseka
    ppaseka Member Posts: 70
    #8
    ppaseka said:

    Follow up
    My wife just finished her treatments on Wednesday. All in all she says it wasn't as bad as she had anticipated. Her first post treatment scan will be towed the end of June. It is hard to believe that it has been six already since she was diagnosed.

    Six Months
    It has been six months today since my widest surgery. It is amazing how fast time goes by. It seems a lifetime ago, but feels like yesterday. She has been through surgery, 28 radiation treatments, 9 chemo treatments with cisplatin and three oral treatments with Xeloda. She has battled cellulitis twice (currently) and lymphadema in her legs and belly. With the exception of five hours in surgery and the 25 minutes each day during radiation, she has never been alone. I have been by her side through it all. She is the strongest, most amazing person I have ever known.

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