Stage 4 Vulvar Cancer
Her gynecologic oncologist explained that surgery wasn't an option given the extent of the cancer (I believe because it is in the lymph node and skin of her groin/hip). Her medical oncologist therefore recommended treatment with cisplatin and navalbine, which we used for about 2 months. During that time, my mom had good days and rocky days. Several weeks in, we had to pause chemotherapy for one week to address the tumor in her shoulder with radiation, and her shoulder is starting to feel better.
We have since gone back on chemotherapy and she feels amazing. However, we recently visited the medical oncologist who says that the tumors in her groin area are larger. She too is somewhat confused by the fact that my mother has felt really very good -- she still is sore on her side and in her vulva area, but, thank God, has had great energy and relatively low pain levels. It really is remarkable how much better she's been over the course of the pat week or two. However, her physician said that she couldn't disregard the increase in tumor size between weeks, so we have switched chemotherapy drugs to taxol and carboplatin.
Does anybody have experience with Stage 4 vulvar cancer they might be willing to share? Are there any specific physicians or hospitals that have specific or special experience treating this particular condition? We're remaining positive, having faith and hope, but would like to look for second (or third) opinions and aren't sure where to start for a rare cancer like vulvar cancer. Thank you for any help you may be able to provide!
Comments
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vulvar cancer
I am so sorry that your mom has had to experience vulvar cancer. I know first hand the ravages of this cancer, I was diagnosed 4 years ago and am still fighting it. I initially was stage 3, with 1 lymph node positive, so I had the vulvectomy and radiation. Last year I had a tumor in my femur which was a metasteses of the VC, so had surgery to remove it, with more radiation to leg and taxol/carboplatin chemo, 6 cycles, which I finished this past March. In October I had my follow up PET scan and another tumor had formed during the time I was going through chemo in my pubic bone. Also I might add that I had another leg surgery this past May to insert a rod in femur to stabilize it, as it fractured.
Right now I am awaiting to hear from Mayo clinic regarding a second opinion for treatment. All my doctors are stumped as to what to do, since it is a rare cancer and I am younger than most VC patients. I too feel pretty good, except for the leg issues now with recovering from surgery. They think leg has not healed as quickly because this tumor was growing entire time, so body was trying to deal with that.
My VC is an adenocarcinoma, a very rare form of VC, most are squamous cell. I have been told that there is nothing about it, no protocol, nothing for them to look at...very isolating. I have accepted the fact that I will have recurrences again and again, they are no longer trying to 'cure' me, just manage it. I am ok with that. Many people live full lives with diseases that are not curable.
I hope this gave you a little information. I agree a second or third opinion is proper.0 -
Vulvar Cancerfunbeadgirl said:vulvar cancer
I am so sorry that your mom has had to experience vulvar cancer. I know first hand the ravages of this cancer, I was diagnosed 4 years ago and am still fighting it. I initially was stage 3, with 1 lymph node positive, so I had the vulvectomy and radiation. Last year I had a tumor in my femur which was a metasteses of the VC, so had surgery to remove it, with more radiation to leg and taxol/carboplatin chemo, 6 cycles, which I finished this past March. In October I had my follow up PET scan and another tumor had formed during the time I was going through chemo in my pubic bone. Also I might add that I had another leg surgery this past May to insert a rod in femur to stabilize it, as it fractured.
Right now I am awaiting to hear from Mayo clinic regarding a second opinion for treatment. All my doctors are stumped as to what to do, since it is a rare cancer and I am younger than most VC patients. I too feel pretty good, except for the leg issues now with recovering from surgery. They think leg has not healed as quickly because this tumor was growing entire time, so body was trying to deal with that.
My VC is an adenocarcinoma, a very rare form of VC, most are squamous cell. I have been told that there is nothing about it, no protocol, nothing for them to look at...very isolating. I have accepted the fact that I will have recurrences again and again, they are no longer trying to 'cure' me, just manage it. I am ok with that. Many people live full lives with diseases that are not curable.
I hope this gave you a little information. I agree a second or third opinion is proper.
My thoughts and prayers go out to all fighting this cancer
I was diagnosed a year ago
I have had several surgeries with a vulvectomy last Feb
I was lucky in that the cancer had not spread to my lymph nodes.
Oncologist appointments have been OK so far
Funbeadgirl - you were one of the first to reach out to me this time last year.
I was frightened and desperately seeking info.
Thank you
I have prayed for you ever since
Keep us posted on how you are doing
All the best to you0 -
Thank youkohara1 said:Vulvar Cancer
My thoughts and prayers go out to all fighting this cancer
I was diagnosed a year ago
I have had several surgeries with a vulvectomy last Feb
I was lucky in that the cancer had not spread to my lymph nodes.
Oncologist appointments have been OK so far
Funbeadgirl - you were one of the first to reach out to me this time last year.
I was frightened and desperately seeking info.
Thank you
I have prayed for you ever since
Keep us posted on how you are doing
All the best to you
Thank you Kohara! I am very pleased to know that a few words I posted here gave you some comfort, we don't always know when we touch someone in a positive way. One of my hopes through all of this would be to give even just one person a ray of hope and understanding. VC is a very isolating diagnosis, it is so rare, and no one knows what it is when you tell them.
Many women are embarrassed to talk about it and I have been trying to remove that stigma by talking openly about my own experience, I would love to form a support group for women in my own area , but finding those with VC is very hard.
I am happy to hear that your VC had not spread to lymph nodes, and keeping up with your oncology appointments is for your benefit.
We must reach out to each other and be supportive through this, cancer changes your life forever, the key is to find a way to not let it control your life forever. I always tell people that I am healthy person that just happened to get cancer, cancer is not me, I am me.
Many blessings to all who come here to find comfort.0 -
I know what you are going
I know what you are going through. While not a woman or a survivor this was my experience as only son of four children of woman with vulvar cancer.
Let me give you a brief history of my mother’s case. In 2007 her gynecologist started treating her for what she thought was Lichen Sclerosus. This treatment continues even after one of the spots was biopsied and the pathologist recommended excision of the spot due to squamous cell carcinoma appearance. As I said the doctor did not follow recommendations. Fast forward to November of 2010, my mother had to go the emergency room for what she thought was a cyst rupturing. She was scheduled with a follow up to her gyno. The same doctor treated her again saying cysts are like wrinkles and we all get them. One week later she was still have bleeding and returned to her doctor. Fortunately her regular doctor was not in and she was seen by someone else who within ten minutes of exam told my mother she was setting up an appointment with an oncologist.
In November of 2010 my mother was diagnosed with vulvar cancer which was not staged. She began 30 rounds of high concentrated radiation on the site of the first lesion. Which created intense pain when she did anything given the location of the radiation. Once the treatments were completed and she was reexamined the dr. recommended taxol/carboplatin chemo. She did three rounds of this (once a month). Once these rounds were completed the doctor in our area told her there was nothing else he could do surgery was out of the question because the tissue damage from radiation. So we were at a loss of where to go from there.
In July of 2011 we sought a second opinion at a very well respected hospital in Nashville Tn (4 hour drive from our hometown). During moms evaluation the doctor told mom they could only manage her symptoms and they would not be able to cure her. My mother is the type who doesn’t want to hear bad news or anything negative which is why she wanted a second opinion. The kind caring manner in which this doctor handled things made the news a little easier to accept. They started her on chemo which was to be administered to in Nashville every 2 weeks. We were able to do this for a while until mom was unable to make the drive. Her levels after every trip down there bottomed out and she was unable to get the chemo treatment. We were able to have the hospital in Nashville right the orders and manage her care in conjunction with a local oncologist who is wonderful.
My mom was not a candidate for surgery because of extent of tissue that was affected by the cancer. In my opinion could have been a candidate had the pathologist recommendation been followed in 2007. The oncologist here worked with here and tried everything he could. This cancer is very destructive to the tissue affected and the tumors appear on the outside of the body making the mobility at least for my mom nearly impossible.
On April 12, 2012 my mom passed away between 545 and 600 am while one of my sisters left her side to shower and I slept on the couch.
Let me say if you are a close family and have siblings now is the time to pull together I and pray that your mothers will not be like my moms, but if it gets rough everyone each of you should be willing to things for her you never thought you would have to do. Don’t let the nurses do everything if it gets to that point, you know your mom the parent child relationship allows for more trust. We designated each one of us duties as far as medical, financial, spiritual, and travel. We made sure everything was taken care of before it was needed. Let me say one wrong signature and health care, insurance, and benefits can fall apart. Be prepared and organized (keep a binder). Ask questions even when it is not the easy ones. Search for clinical trials, treatment programs (generally in larger cities), Boston, Atlanta, NYC, and the Cancer hospital in AZ are good places to start. Research every drug they want to give your mom. Talk to your mom about alternative treatments if traditional ones are not working. Keep in mind my sisters and I did this for almost 2 years and we have families and children to care for as well.
Lastly never give up hope and be willing to accept the decisions your mother makes and defend those as if they were your own.
To the women who have responded. I commend your bravery and honesty and it gives me joy to know that women are surviving this.0 -
I know what you are going
I know what you are going through. While not a woman or a survivor this was my experience as only son of four children of woman with vulvar cancer.
Let me give you a brief history of my mother’s case. In 2007 her gynecologist started treating her for what she thought was Lichen Sclerosus. This treatment continues even after one of the spots was biopsied and the pathologist recommended excision of the spot due to squamous cell carcinoma appearance. As I said the doctor did not follow recommendations. Fast forward to November of 2010, my mother had to go the emergency room for what she thought was a cyst rupturing. She was scheduled with a follow up to her gyno. The same doctor treated her again saying cysts are like wrinkles and we all get them. One week later she was still have bleeding and returned to her doctor. Fortunately her regular doctor was not in and she was seen by someone else who within ten minutes of exam told my mother she was setting up an appointment with an oncologist.
In November of 2010 my mother was diagnosed with vulvar cancer which was not staged. She began 30 rounds of high concentrated radiation on the site of the first lesion. Which created intense pain when she did anything given the location of the radiation. Once the treatments were completed and she was reexamined the dr. recommended taxol/carboplatin chemo. She did three rounds of this (once a month). Once these rounds were completed the doctor in our area told her there was nothing else he could do surgery was out of the question because the tissue damage from radiation. So we were at a loss of where to go from there.
In July of 2011 we sought a second opinion at a very well respected hospital in Nashville Tn (4 hour drive from our hometown). During moms evaluation the doctor told mom they could only manage her symptoms and they would not be able to cure her. My mother is the type who doesn’t want to hear bad news or anything negative which is why she wanted a second opinion. The kind caring manner in which this doctor handled things made the news a little easier to accept. They started her on chemo which was to be administered to in Nashville every 2 weeks. We were able to do this for a while until mom was unable to make the drive. Her levels after every trip down there bottomed out and she was unable to get the chemo treatment. We were able to have the hospital in Nashville right the orders and manage her care in conjunction with a local oncologist who is wonderful.
My mom was not a candidate for surgery because of extent of tissue that was affected by the cancer. In my opinion could have been a candidate had the pathologist recommendation been followed in 2007. The oncologist here worked with here and tried everything he could. This cancer is very destructive to the tissue affected and the tumors appear on the outside of the body making the mobility at least for my mom nearly impossible.
On April 12, 2012 my mom passed away between 545 and 600 am while one of my sisters left her side to shower and I slept on the couch.
Let me say if you are a close family and have siblings now is the time to pull together I and pray that your mothers will not be like my moms, but if it gets rough everyone each of you should be willing to things for her you never thought you would have to do. Don’t let the nurses do everything if it gets to that point, you know your mom the parent child relationship allows for more trust. We designated each one of us duties as far as medical, financial, spiritual, and travel. We made sure everything was taken care of before it was needed. Let me say one wrong signature and health care, insurance, and benefits can fall apart. Be prepared and organized (keep a binder). Ask questions even when it is not the easy ones. Search for clinical trials, treatment programs (generally in larger cities), Boston, Atlanta, NYC, and the Cancer hospital in AZ are good places to start. Research every drug they want to give your mom. Talk to your mom about alternative treatments if traditional ones are not working. Keep in mind my sisters and I did this for almost 2 years and we have families and children to care for as well.
Lastly never give up hope and be willing to accept the decisions your mother makes and defend those as if they were your own.
To the women who have responded. I commend your bravery and honesty and it gives me joy to know that women are surviving this.0 -
I know what you are going
I know what you are going through. While not a woman or a survivor this was my experience as only son of four children of woman with vulvar cancer.
Let me give you a brief history of my mother’s case. In 2007 her gynecologist started treating her for what she thought was Lichen Sclerosus. This treatment continues even after one of the spots was biopsied and the pathologist recommended excision of the spot due to squamous cell carcinoma appearance. As I said the doctor did not follow recommendations. Fast forward to November of 2010, my mother had to go the emergency room for what she thought was a cyst rupturing. She was scheduled with a follow up to her gyno. The same doctor treated her again saying cysts are like wrinkles and we all get them. One week later she was still have bleeding and returned to her doctor. Fortunately her regular doctor was not in and she was seen by someone else who within ten minutes of exam told my mother she was setting up an appointment with an oncologist.
In November of 2010 my mother was diagnosed with vulvar cancer which was not staged. She began 30 rounds of high concentrated radiation on the site of the first lesion. Which created intense pain when she did anything given the location of the radiation. Once the treatments were completed and she was reexamined the dr. recommended taxol/carboplatin chemo. She did three rounds of this (once a month). Once these rounds were completed the doctor in our area told her there was nothing else he could do surgery was out of the question because the tissue damage from radiation. So we were at a loss of where to go from there.
In July of 2011 we sought a second opinion at a very well respected hospital in Nashville Tn (4 hour drive from our hometown). During moms evaluation the doctor told mom they could only manage her symptoms and they would not be able to cure her. My mother is the type who doesn’t want to hear bad news or anything negative which is why she wanted a second opinion. The kind caring manner in which this doctor handled things made the news a little easier to accept. They started her on chemo which was to be administered to in Nashville every 2 weeks. We were able to do this for a while until mom was unable to make the drive. Her levels after every trip down there bottomed out and she was unable to get the chemo treatment. We were able to have the hospital in Nashville right the orders and manage her care in conjunction with a local oncologist who is wonderful.
My mom was not a candidate for surgery because of extent of tissue that was affected by the cancer. In my opinion could have been a candidate had the pathologist recommendation been followed in 2007. The oncologist here worked with here and tried everything he could. This cancer is very destructive to the tissue affected and the tumors appear on the outside of the body making the mobility at least for my mom nearly impossible.
On April 12, 2012 my mom passed away between 545 and 600 am while one of my sisters left her side to shower and I slept on the couch.
Let me say if you are a close family and have siblings now is the time to pull together I and pray that your mothers will not be like my moms, but if it gets rough everyone each of you should be willing to things for her you never thought you would have to do. Don’t let the nurses do everything if it gets to that point, you know your mom the parent child relationship allows for more trust. We designated each one of us duties as far as medical, financial, spiritual, and travel. We made sure everything was taken care of before it was needed. Let me say one wrong signature and health care, insurance, and benefits can fall apart. Be prepared and organized (keep a binder). Ask questions even when it is not the easy ones. Search for clinical trials, treatment programs (generally in larger cities), Boston, Atlanta, NYC, and the Cancer hospital in AZ are good places to start. Research every drug they want to give your mom. Talk to your mom about alternative treatments if traditional ones are not working. Keep in mind my sisters and I did this for almost 2 years and we have families and children to care for as well.
Lastly never give up hope and be willing to accept the decisions your mother makes and defend those as if they were your own.
To the women who have responded. I commend your bravery and honesty and it gives me joy to know that women are surviving this.0 -
I know what you are going
I know what you are going through. While not a woman or a survivor this was my experience as only son of four children of woman with vulvar cancer.
Let me give you a brief history of my mother’s case. In 2007 her gynecologist started treating her for what she thought was Lichen Sclerosus. This treatment continues even after one of the spots was biopsied and the pathologist recommended excision of the spot due to squamous cell carcinoma appearance. As I said the doctor did not follow recommendations. Fast forward to November of 2010, my mother had to go the emergency room for what she thought was a cyst rupturing. She was scheduled with a follow up to her gyno. The same doctor treated her again saying cysts are like wrinkles and we all get them. One week later she was still have bleeding and returned to her doctor. Fortunately her regular doctor was not in and she was seen by someone else who within ten minutes of exam told my mother she was setting up an appointment with an oncologist.
In November of 2010 my mother was diagnosed with vulvar cancer which was not staged. She began 30 rounds of high concentrated radiation on the site of the first lesion. Which created intense pain when she did anything given the location of the radiation. Once the treatments were completed and she was reexamined the dr. recommended taxol/carboplatin chemo. She did three rounds of this (once a month). Once these rounds were completed the doctor in our area told her there was nothing else he could do surgery was out of the question because the tissue damage from radiation. So we were at a loss of where to go from there.
In July of 2011 we sought a second opinion at a very well respected hospital in Nashville Tn (4 hour drive from our hometown). During moms evaluation the doctor told mom they could only manage her symptoms and they would not be able to cure her. My mother is the type who doesn’t want to hear bad news or anything negative which is why she wanted a second opinion. The kind caring manner in which this doctor handled things made the news a little easier to accept. They started her on chemo which was to be administered to in Nashville every 2 weeks. We were able to do this for a while until mom was unable to make the drive. Her levels after every trip down there bottomed out and she was unable to get the chemo treatment. We were able to have the hospital in Nashville right the orders and manage her care in conjunction with a local oncologist who is wonderful.
My mom was not a candidate for surgery because of extent of tissue that was affected by the cancer. In my opinion could have been a candidate had the pathologist recommendation been followed in 2007. The oncologist here worked with here and tried everything he could. This cancer is very destructive to the tissue affected and the tumors appear on the outside of the body making the mobility at least for my mom nearly impossible.
On April 12, 2012 my mom passed away between 545 and 600 am while one of my sisters left her side to shower and I slept on the couch.
Let me say if you are a close family and have siblings now is the time to pull together I and pray that your mothers will not be like my moms, but if it gets rough everyone each of you should be willing to things for her you never thought you would have to do. Don’t let the nurses do everything if it gets to that point, you know your mom the parent child relationship allows for more trust. We designated each one of us duties as far as medical, financial, spiritual, and travel. We made sure everything was taken care of before it was needed. Let me say one wrong signature and health care, insurance, and benefits can fall apart. Be prepared and organized (keep a binder). Ask questions even when it is not the easy ones. Search for clinical trials, treatment programs (generally in larger cities), Boston, Atlanta, NYC, and the Cancer hospital in AZ are good places to start. Research every drug they want to give your mom. Talk to your mom about alternative treatments if traditional ones are not working. Keep in mind my sisters and I did this for almost 2 years and we have families and children to care for as well.
Lastly never give up hope and be willing to accept the decisions your mother makes and defend those as if they were your own.
To the women who have responded. I commend your bravery and honesty and it gives me joy to know that women are surviving this.0 -
I'm so sorryjdmcnutt said:I know what you are going
I know what you are going through. While not a woman or a survivor this was my experience as only son of four children of woman with vulvar cancer.
Let me give you a brief history of my mother’s case. In 2007 her gynecologist started treating her for what she thought was Lichen Sclerosus. This treatment continues even after one of the spots was biopsied and the pathologist recommended excision of the spot due to squamous cell carcinoma appearance. As I said the doctor did not follow recommendations. Fast forward to November of 2010, my mother had to go the emergency room for what she thought was a cyst rupturing. She was scheduled with a follow up to her gyno. The same doctor treated her again saying cysts are like wrinkles and we all get them. One week later she was still have bleeding and returned to her doctor. Fortunately her regular doctor was not in and she was seen by someone else who within ten minutes of exam told my mother she was setting up an appointment with an oncologist.
In November of 2010 my mother was diagnosed with vulvar cancer which was not staged. She began 30 rounds of high concentrated radiation on the site of the first lesion. Which created intense pain when she did anything given the location of the radiation. Once the treatments were completed and she was reexamined the dr. recommended taxol/carboplatin chemo. She did three rounds of this (once a month). Once these rounds were completed the doctor in our area told her there was nothing else he could do surgery was out of the question because the tissue damage from radiation. So we were at a loss of where to go from there.
In July of 2011 we sought a second opinion at a very well respected hospital in Nashville Tn (4 hour drive from our hometown). During moms evaluation the doctor told mom they could only manage her symptoms and they would not be able to cure her. My mother is the type who doesn’t want to hear bad news or anything negative which is why she wanted a second opinion. The kind caring manner in which this doctor handled things made the news a little easier to accept. They started her on chemo which was to be administered to in Nashville every 2 weeks. We were able to do this for a while until mom was unable to make the drive. Her levels after every trip down there bottomed out and she was unable to get the chemo treatment. We were able to have the hospital in Nashville right the orders and manage her care in conjunction with a local oncologist who is wonderful.
My mom was not a candidate for surgery because of extent of tissue that was affected by the cancer. In my opinion could have been a candidate had the pathologist recommendation been followed in 2007. The oncologist here worked with here and tried everything he could. This cancer is very destructive to the tissue affected and the tumors appear on the outside of the body making the mobility at least for my mom nearly impossible.
On April 12, 2012 my mom passed away between 545 and 600 am while one of my sisters left her side to shower and I slept on the couch.
Let me say if you are a close family and have siblings now is the time to pull together I and pray that your mothers will not be like my moms, but if it gets rough everyone each of you should be willing to things for her you never thought you would have to do. Don’t let the nurses do everything if it gets to that point, you know your mom the parent child relationship allows for more trust. We designated each one of us duties as far as medical, financial, spiritual, and travel. We made sure everything was taken care of before it was needed. Let me say one wrong signature and health care, insurance, and benefits can fall apart. Be prepared and organized (keep a binder). Ask questions even when it is not the easy ones. Search for clinical trials, treatment programs (generally in larger cities), Boston, Atlanta, NYC, and the Cancer hospital in AZ are good places to start. Research every drug they want to give your mom. Talk to your mom about alternative treatments if traditional ones are not working. Keep in mind my sisters and I did this for almost 2 years and we have families and children to care for as well.
Lastly never give up hope and be willing to accept the decisions your mother makes and defend those as if they were your own.
To the women who have responded. I commend your bravery and honesty and it gives me joy to know that women are surviving this.
Please accept my deepest condolences in the loss of your dear mother, truly this disease has taken too many people from all of us. You are correct in how you describe the need for the family to pull together and really be involved, we are our own best advocates.
I am at a loss even in my own situation with vulvar cancer, I've had a second metastes in last year, so I am again considered a stage 4 and location of new tumor is in a very hard to reach place via surgery, it is in my pubic bone. Pelvic resection would be very risky to attempt and the outcome for me might not be all that good. Le't face it at this point they are no longer trying to cure me, just manage it. I am barely able to get around now since my last surgery in May to insert rod in femur to stabilize leg after a fracture, to add another surgery on top of that would slow down healing even more. I now have to think about quality of life rather than curing it. Obviously this new tumor was growing during the entire I was under going chemotherapy this year...not very encouraging.
Docs at Mayo think surgery is possible, but some of my docs here in Wisconsin are against it, honestly being 300 miles away from home after a surgery like that is very scary to me.
I wish I could communicate with someone that has had pelvic resection of the pubic bone.
I would implore all women to get a better understanding of their bodies, if something seems amiss, don't let a doctor put you off, go to another doctor for attention.
It just makes me sick to my stomach that your mother was put off by a doctor saying that a rupturing cyst is like a wrinkle! Really? My vulvar cancer started with a cyst that eventually ruptured also, and my doc sent me to her personal gyn right away! He did a biopsy and sent me to a gyn oncologist in 2 days, and I was still a stage 3 but I still feel I am doing good, despite my current challenges. I admit that my VC was an adenocarcinoma, very different from squamous cell, but all the same, cancer is cancer and each person should be given attention to their particular needs.
Be strong all of you that visit here and gain strength from the fact that others have been here before you and you may be able to give those that come after you a word of hope and encouragement. Blessings to all.0 -
So very sorry for your lossjdmcnutt said:I know what you are going
I know what you are going through. While not a woman or a survivor this was my experience as only son of four children of woman with vulvar cancer.
Let me give you a brief history of my mother’s case. In 2007 her gynecologist started treating her for what she thought was Lichen Sclerosus. This treatment continues even after one of the spots was biopsied and the pathologist recommended excision of the spot due to squamous cell carcinoma appearance. As I said the doctor did not follow recommendations. Fast forward to November of 2010, my mother had to go the emergency room for what she thought was a cyst rupturing. She was scheduled with a follow up to her gyno. The same doctor treated her again saying cysts are like wrinkles and we all get them. One week later she was still have bleeding and returned to her doctor. Fortunately her regular doctor was not in and she was seen by someone else who within ten minutes of exam told my mother she was setting up an appointment with an oncologist.
In November of 2010 my mother was diagnosed with vulvar cancer which was not staged. She began 30 rounds of high concentrated radiation on the site of the first lesion. Which created intense pain when she did anything given the location of the radiation. Once the treatments were completed and she was reexamined the dr. recommended taxol/carboplatin chemo. She did three rounds of this (once a month). Once these rounds were completed the doctor in our area told her there was nothing else he could do surgery was out of the question because the tissue damage from radiation. So we were at a loss of where to go from there.
In July of 2011 we sought a second opinion at a very well respected hospital in Nashville Tn (4 hour drive from our hometown). During moms evaluation the doctor told mom they could only manage her symptoms and they would not be able to cure her. My mother is the type who doesn’t want to hear bad news or anything negative which is why she wanted a second opinion. The kind caring manner in which this doctor handled things made the news a little easier to accept. They started her on chemo which was to be administered to in Nashville every 2 weeks. We were able to do this for a while until mom was unable to make the drive. Her levels after every trip down there bottomed out and she was unable to get the chemo treatment. We were able to have the hospital in Nashville right the orders and manage her care in conjunction with a local oncologist who is wonderful.
My mom was not a candidate for surgery because of extent of tissue that was affected by the cancer. In my opinion could have been a candidate had the pathologist recommendation been followed in 2007. The oncologist here worked with here and tried everything he could. This cancer is very destructive to the tissue affected and the tumors appear on the outside of the body making the mobility at least for my mom nearly impossible.
On April 12, 2012 my mom passed away between 545 and 600 am while one of my sisters left her side to shower and I slept on the couch.
Let me say if you are a close family and have siblings now is the time to pull together I and pray that your mothers will not be like my moms, but if it gets rough everyone each of you should be willing to things for her you never thought you would have to do. Don’t let the nurses do everything if it gets to that point, you know your mom the parent child relationship allows for more trust. We designated each one of us duties as far as medical, financial, spiritual, and travel. We made sure everything was taken care of before it was needed. Let me say one wrong signature and health care, insurance, and benefits can fall apart. Be prepared and organized (keep a binder). Ask questions even when it is not the easy ones. Search for clinical trials, treatment programs (generally in larger cities), Boston, Atlanta, NYC, and the Cancer hospital in AZ are good places to start. Research every drug they want to give your mom. Talk to your mom about alternative treatments if traditional ones are not working. Keep in mind my sisters and I did this for almost 2 years and we have families and children to care for as well.
Lastly never give up hope and be willing to accept the decisions your mother makes and defend those as if they were your own.
To the women who have responded. I commend your bravery and honesty and it gives me joy to know that women are surviving this.
Your mother was blessed to have you and your sisters there for her during her ordeal.
No greater gift than to share the difficult times and to share the precious final days together.
May God bless you and your sisters0 -
my heart aches for all with this disease
My 82 year old mother died from vulvar cancer 4 years ago. She was first being treated for a yeast infection because of her itching and burning. When medication did not help she was then given medication for a urinary track infection. Soon that did not help either. When the gynecologist was unable to perform a visual exam and internal exam because of the severe pain my mother was in, she was directed to a specialist who then performed a biopsy under general anesthesia. Biopsy confirmed it was cancer, she then opted for the radiation and chemo route. Surgery was not an option as it has already invaded the lymph nodes in her groin. She had 30 days of radiation and 6 treatments of chemo. After 7 months they siad her cancer was gone, and she had the vulva of a "newborn baby" quoted from the doctor. Sadly within a year and a half, her symptons had reappeared and a 2nd biopsy was perfomred to once again confirm the return of the cancer. The doctors said that once it returns it is not curable and her options were either pain management or she could try 6 more treatments of chemo, but a much stronger chemical which would make her very sick and lose her hair. She opted for pain management. They gave her 12-18 months. Sadly she made it only 6 weeks. The cancer had spread vastly and she went down hill rapidly. She fought a hard courageous battle, but succombed to this dreadful disease. She was a true heroine, fought so hard yet barely once complained. Thank God when it waaas her time to go she went quickly. My heart aches to those women who suffer from this dreadful disease. Your strength lies within your family and loved ones. Women..do not be afraid to ask your gynecologist to examine you closely when you have your annual exam..it could save your life!
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I am so sorry for your lossmontanawoman said:my heart aches for all with this disease
My 82 year old mother died from vulvar cancer 4 years ago. She was first being treated for a yeast infection because of her itching and burning. When medication did not help she was then given medication for a urinary track infection. Soon that did not help either. When the gynecologist was unable to perform a visual exam and internal exam because of the severe pain my mother was in, she was directed to a specialist who then performed a biopsy under general anesthesia. Biopsy confirmed it was cancer, she then opted for the radiation and chemo route. Surgery was not an option as it has already invaded the lymph nodes in her groin. She had 30 days of radiation and 6 treatments of chemo. After 7 months they siad her cancer was gone, and she had the vulva of a "newborn baby" quoted from the doctor. Sadly within a year and a half, her symptons had reappeared and a 2nd biopsy was perfomred to once again confirm the return of the cancer. The doctors said that once it returns it is not curable and her options were either pain management or she could try 6 more treatments of chemo, but a much stronger chemical which would make her very sick and lose her hair. She opted for pain management. They gave her 12-18 months. Sadly she made it only 6 weeks. The cancer had spread vastly and she went down hill rapidly. She fought a hard courageous battle, but succombed to this dreadful disease. She was a true heroine, fought so hard yet barely once complained. Thank God when it waaas her time to go she went quickly. My heart aches to those women who suffer from this dreadful disease. Your strength lies within your family and loved ones. Women..do not be afraid to ask your gynecologist to examine you closely when you have your annual exam..it could save your life!
Please accept my condolences on the loss of your dear mother, I am sure she would be pleased that you saw her as a couregeous woman fighting a very hard battle. Yes, vulvar cancer, which is very rare, and there are several cell types also, is a hard cancer to understand and to explain to others. Women do not realize that from a young age, they need to do a self exam of the vulva every month, just as they do for their breasts, it is the same type of tissue that the breast is made up of and subject to lumps and bumps also.
Since I last posted, I had a procedure called cryoablation to my most recent tumor, since it was not operable and chemo did nothing a year ago, and then in March I had another PET scan and lo and behold I finally received good news! No new tumors and the tumor that was just ablated was gone! My first clear scan since 2008! I am so happy. I will have another scan in Sept./Oct. but for now I consider myself cancer free even though I know that being a stage 4 I will more than likely have to deal with recurrences in the future but maybe they will be further and further apart. Now I have to focus on my leg issues, I have a non union fracture in the femur, and another new fracture since last Nov., so I may have to have a bone grafting surgery. I do not look forward to that, but I am only 60 and I have a lot of living left to do and montanawoman...reading the story of your mom and seeing how hard she fought, I know I can do it too! She sounds like she was a strong determined woman that lived gracefully to the end, that is a gift that you have from her and thank you for sharing her story with us. As you know this type of cancer can be very isolating, no one knows about it or talks about it and we all have to change that.
Please every woman here...learn for these stories and promote monthly vulva exams to all the ladies in your life!
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Vulva Cancer Mucinous Adenocarcinoma with Unknown Primaryfunbeadgirl said:vulvar cancer
I am so sorry that your mom has had to experience vulvar cancer. I know first hand the ravages of this cancer, I was diagnosed 4 years ago and am still fighting it. I initially was stage 3, with 1 lymph node positive, so I had the vulvectomy and radiation. Last year I had a tumor in my femur which was a metasteses of the VC, so had surgery to remove it, with more radiation to leg and taxol/carboplatin chemo, 6 cycles, which I finished this past March. In October I had my follow up PET scan and another tumor had formed during the time I was going through chemo in my pubic bone. Also I might add that I had another leg surgery this past May to insert a rod in femur to stabilize it, as it fractured.
Right now I am awaiting to hear from Mayo clinic regarding a second opinion for treatment. All my doctors are stumped as to what to do, since it is a rare cancer and I am younger than most VC patients. I too feel pretty good, except for the leg issues now with recovering from surgery. They think leg has not healed as quickly because this tumor was growing entire time, so body was trying to deal with that.
My VC is an adenocarcinoma, a very rare form of VC, most are squamous cell. I have been told that there is nothing about it, no protocol, nothing for them to look at...very isolating. I have accepted the fact that I will have recurrences again and again, they are no longer trying to 'cure' me, just manage it. I am ok with that. Many people live full lives with diseases that are not curable.
I hope this gave you a little information. I agree a second or third opinion is proper.Eight weeks ago I also was treated for Vulva Cancer Mucinous Adenocarcinoma with Unknown Primary resulting partial left Hemivulvectomy and Lymph node dissection of the groin and thigh. This is a very bad nightmare. Can I please get out of this dream? In the 2011 there was a very small cyst in the Labia Majora the size of a pea. I found it because I had severe itching and started a self-examine to figure out why. I had severe perennial skin breakage and itching for the last 15 years. For 18 months my doctors kept a close watch until it started growing out of control. The general consciences from my GYN and Primary Care doctors were it must be removed. My journey began in December 2012. I so hope you respond. I am so desperate to know if you are doing well. I am scared of the finding Vulva Cancer Mucinous Adenocarcinoma with Unknown Primary. I am now fighting Lymphedema of the l left hip, groin, upper thigh, and leg. None of my pre surgery clothing fit and it hurts to wear any under panties. Any suggestion?
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Dreams or nightmare?Andeoup said:Vulva Cancer Mucinous Adenocarcinoma with Unknown Primary
Eight weeks ago I also was treated for Vulva Cancer Mucinous Adenocarcinoma with Unknown Primary resulting partial left Hemivulvectomy and Lymph node dissection of the groin and thigh. This is a very bad nightmare. Can I please get out of this dream? In the 2011 there was a very small cyst in the Labia Majora the size of a pea. I found it because I had severe itching and started a self-examine to figure out why. I had severe perennial skin breakage and itching for the last 15 years. For 18 months my doctors kept a close watch until it started growing out of control. The general consciences from my GYN and Primary Care doctors were it must be removed. My journey began in December 2012. I so hope you respond. I am so desperate to know if you are doing well. I am scared of the finding Vulva Cancer Mucinous Adenocarcinoma with Unknown Primary. I am now fighting Lymphedema of the l left hip, groin, upper thigh, and leg. None of my pre surgery clothing fit and it hurts to wear any under panties. Any suggestion?
Andeoup, I am so sorry for what you are going through, I totally understand where you are coming from. My diagnosis was the same, I have never met another person with vulvar adenocarcinoma. I however believe that my docs think my VC was the primary site, they put me through quite a few tests and exams to find other primary but none were ever found.
I don't know how old you are but I am 60 now, I was 55 when it started for me and I also had thryoid cancer 6 months after my original VC diagnosis. I have also had 2 metastes of the VC one in my femur and this last one in left pubic bone, but I must tell you that I am doing fine. My last PET scan in March was clear, first clear one in 4 years! So I consider myself cancer free for the moment.
I also have issues with lymph edema in my left lower leg but even that is manageable since I learned how to do my own massage and I have the stockings to wear when it gets bad. I keep a close eye on it. As far as clothing goes, I wore yoga pants two sizes larger and no underwear. I had to do that during radiation to the pelvic area because skin was sensitive and I eventually had open burns. I also wore a lot of skirts. I Also get exercise and keep as active as I can since my femur has a non union fracture, but I will deal with that in a few weeks with ortho onco.
I know it is very scary to have a disease that no one understands or even knows what it is, but you can educate other women about this. We all need to know that a monthly self exam of the vulva is imperative for ALL women, no matter what their age is or if they have problems or not. Did you know the tissue of the vulva is the same as breast tissue?
My VC started with a small cyst also on the inner labia, but I only remember once having a little itching but other than that, no problems. My Primary doc sent me to her gyno immediately and he did a biopsy same day, so I feel fortunate.
DId you have any positive lymph nodes, will you have radiation? With my first metastes I had radiation for the second time and also 6 cycles of chemo, it was hard, but I got through it. My heart really goes out to you, because I truly know what you are going through. If you have any questions, I will answer them, if you want to communicate on private message that is fine too.
You are not alone, you CAN get through this and I am here for you. Be Strong!
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Mucinous Adenocarcinoma. Nightmare for certain.funbeadgirl said:Dreams or nightmare?
Andeoup, I am so sorry for what you are going through, I totally understand where you are coming from. My diagnosis was the same, I have never met another person with vulvar adenocarcinoma. I however believe that my docs think my VC was the primary site, they put me through quite a few tests and exams to find other primary but none were ever found.
I don't know how old you are but I am 60 now, I was 55 when it started for me and I also had thryoid cancer 6 months after my original VC diagnosis. I have also had 2 metastes of the VC one in my femur and this last one in left pubic bone, but I must tell you that I am doing fine. My last PET scan in March was clear, first clear one in 4 years! So I consider myself cancer free for the moment.
I also have issues with lymph edema in my left lower leg but even that is manageable since I learned how to do my own massage and I have the stockings to wear when it gets bad. I keep a close eye on it. As far as clothing goes, I wore yoga pants two sizes larger and no underwear. I had to do that during radiation to the pelvic area because skin was sensitive and I eventually had open burns. I also wore a lot of skirts. I Also get exercise and keep as active as I can since my femur has a non union fracture, but I will deal with that in a few weeks with ortho onco.
I know it is very scary to have a disease that no one understands or even knows what it is, but you can educate other women about this. We all need to know that a monthly self exam of the vulva is imperative for ALL women, no matter what their age is or if they have problems or not. Did you know the tissue of the vulva is the same as breast tissue?
My VC started with a small cyst also on the inner labia, but I only remember once having a little itching but other than that, no problems. My Primary doc sent me to her gyno immediately and he did a biopsy same day, so I feel fortunate.
DId you have any positive lymph nodes, will you have radiation? With my first metastes I had radiation for the second time and also 6 cycles of chemo, it was hard, but I got through it. My heart really goes out to you, because I truly know what you are going through. If you have any questions, I will answer them, if you want to communicate on private message that is fine too.
You are not alone, you CAN get through this and I am here for you. Be Strong!
@FunBeadGirl, It is a blessing to hear from you. You have given me hope even though you have an ongoing battle. I believe we must post our stories so that others can have a source of hope and knowledge. Are your ongoing and past cancers the same type? How terrible for you. I am so sorry. I ask for information from The National Cancer Institute and been reading the Medical Journals they suggested. It is thought that women after menopause, 55 years or older may have a gene mutation in P53 that causes this type of cancer. Did you know that? I am 55 years old.
My heart bleeds for all women regardless of the place or type of cancer. We must get the word out to all women to self-examine their Vulva and other vital parts. I found mine and pointed it out and sought medical care every few months for 18 months from my GYN and Primary care doctors. It was inside and no one notice but me because of the itching and burning and swelling of the cyst up and down.
One bit of advice ladies please names your Cancer types. That is how I found “FunBeadGirl.” The type of cancer in my search engine: Vulva cancer and Mucinous Adenocarcinoma. You are the very first person ever that I located with my type of Vulva cancer.
My Oncologist sought the advice of others medical professional. I have several medical doctors and none had heard of this type of cancer it is so rare. My oncologist told me that he has no idea where this Metastasis Mucinous Adenocarcinoma came from. So now have “AUP” Adenocarcinoma unknown primary. That is not good. So why the surgery: He was advised that is would be found in the layers of my vulva. My Oncologist said he took out the most likely area that the cancer would spread and found no further cancer in this area. My GYN actually removed the cyst from the Labia and found Metastasis Mucinous Adenocarcinoma in Dec. 2012. My doctor said I am just a rare jewel! Yeah right….
It would appear that I may be eligible for Social Security Disability under the new compassion allowance. It means I do not have a great life expectancy since they cannot find the primary cancer. I have worked for 34 years in an office, retired and returned to work. Now I am not working, because I cannot sit stand or wear clothes for long periods of time.
Today my primary care doctor said that this primary cancer will normally show its ugly face several months after the metastasis cancer appears. It is very scary for me. The marker in the metastasis showed every vital organ. PT Treat for the Lymphedema will begin soon.
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Rare jewels indeed!Andeoup said:Mucinous Adenocarcinoma. Nightmare for certain.
@FunBeadGirl, It is a blessing to hear from you. You have given me hope even though you have an ongoing battle. I believe we must post our stories so that others can have a source of hope and knowledge. Are your ongoing and past cancers the same type? How terrible for you. I am so sorry. I ask for information from The National Cancer Institute and been reading the Medical Journals they suggested. It is thought that women after menopause, 55 years or older may have a gene mutation in P53 that causes this type of cancer. Did you know that? I am 55 years old.
My heart bleeds for all women regardless of the place or type of cancer. We must get the word out to all women to self-examine their Vulva and other vital parts. I found mine and pointed it out and sought medical care every few months for 18 months from my GYN and Primary care doctors. It was inside and no one notice but me because of the itching and burning and swelling of the cyst up and down.
One bit of advice ladies please names your Cancer types. That is how I found “FunBeadGirl.” The type of cancer in my search engine: Vulva cancer and Mucinous Adenocarcinoma. You are the very first person ever that I located with my type of Vulva cancer.
My Oncologist sought the advice of others medical professional. I have several medical doctors and none had heard of this type of cancer it is so rare. My oncologist told me that he has no idea where this Metastasis Mucinous Adenocarcinoma came from. So now have “AUP” Adenocarcinoma unknown primary. That is not good. So why the surgery: He was advised that is would be found in the layers of my vulva. My Oncologist said he took out the most likely area that the cancer would spread and found no further cancer in this area. My GYN actually removed the cyst from the Labia and found Metastasis Mucinous Adenocarcinoma in Dec. 2012. My doctor said I am just a rare jewel! Yeah right….
It would appear that I may be eligible for Social Security Disability under the new compassion allowance. It means I do not have a great life expectancy since they cannot find the primary cancer. I have worked for 34 years in an office, retired and returned to work. Now I am not working, because I cannot sit stand or wear clothes for long periods of time.
Today my primary care doctor said that this primary cancer will normally show its ugly face several months after the metastasis cancer appears. It is very scary for me. The marker in the metastasis showed every vital organ. PT Treat for the Lymphedema will begin soon.
My first diagnosis was stage 3 vulvar adenocarcinoma, by accident the thyroid cancer was found on my follow up PET scan 6 months later, it was not related to the VC. My first bone metastes was vulvar adenocarciinoma as was my second metastes, both related to the VC.
I don't know anything aboyt the P53 mutation, maybe something I should ask about, however I had not started menopause yet. Do you know if your VC is estrogen based? I am sorry it took you 18 months to get something done, seems like a long time. Yes adenocarcinoma is very rare, most VC is squamous cell type and that is rare also but becoming more common. I was 55 at my first diagnosis, but I am now 60, but a very young 60! This past February I applied for SS disability because I have not been able to do the work I did before. I have had a totalof 8 surgeries, 2 of them on my right femur, one in Aug 2011, then I had radiation and chemo. My leg was hurting a lot, so doc decided to go back in and put a rod in my leg(to replace the plate they originally put in) and my leg was actually fractured, that was in May 2012, it never showed up on the x ray. It is still fractured, and has a new fracture and not healed, they think the healing process was hampered by the radiation to the femur and the chemo. My immune system and body is so beat up from everything.
Anyway, SS approved my disability within 2 weeks, and they back paid me for one year. I am a very organized person and have documented everything from day one, so I had a lot of info. I also had just got a second opinion from Mayo clinic in January so I had all my medical records that I could send to SS too. I am now considered stage 4, incurable..but that does not mean that I am terminal!!! A lot of people live with incurable diseases, like diabetes but it is manageable. That is what docs will do for me, they will treat each recurrence, hopefully they will be able to keep them far apart.
Did they check you out for other primary sites? If they couldn't find any why do they say you have metastatic VC automatically? That was original thought with me, but nothing else ever showed up and from what I understand a cancer is defined by cell type and original site. That is why the tumor in my femur bone was not considered bone cancer it was vulvar cancer, because the cells were identified as vulvar cancer from original pathology.
From my own research, I found that this VC in particular is more common in women in later years, 70-80 who are well past menopause. I know the statistics don't look good, but please don't hang your hat on those numbers. We are all indivuduals and our personal health plays a big part in how the cancer acts in the body. I know that with 2 metastes so close together, it is not good for me, but I truly believe that I will beat those statistics, I will be a trailblazer! My gyn onco is a teacher of oncology and in the beginning he always had medical students with him and I was okay with that because I want the new generation of doctors to be more aware of this cancer, so they can identify it sooner and help women.
Yes, we both are rare jewels! My radiation oncologist said I should buy a lottery ticket! haha. Where are you located?
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some experience with stage 4 vulvar cancer
Dear mdk2121... i posted last week about my mothers experience with her stage 4 vulvar cancer. despite having radiation and chemo, she did mange to have a few good months after her treatments. sadly the cancer did return ~2 years later and took her life. the docs said that when this type of cancer returns, there is no cure. she was stage 4 when they diagnosed her the first time. i wish your mother the best and hope that she has/is been doing better. my heart goes out to you and yours.
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Rare jewel you are FunBeadGirlfunbeadgirl said:Rare jewels indeed!
My first diagnosis was stage 3 vulvar adenocarcinoma, by accident the thyroid cancer was found on my follow up PET scan 6 months later, it was not related to the VC. My first bone metastes was vulvar adenocarciinoma as was my second metastes, both related to the VC.
I don't know anything aboyt the P53 mutation, maybe something I should ask about, however I had not started menopause yet. Do you know if your VC is estrogen based? I am sorry it took you 18 months to get something done, seems like a long time. Yes adenocarcinoma is very rare, most VC is squamous cell type and that is rare also but becoming more common. I was 55 at my first diagnosis, but I am now 60, but a very young 60! This past February I applied for SS disability because I have not been able to do the work I did before. I have had a totalof 8 surgeries, 2 of them on my right femur, one in Aug 2011, then I had radiation and chemo. My leg was hurting a lot, so doc decided to go back in and put a rod in my leg(to replace the plate they originally put in) and my leg was actually fractured, that was in May 2012, it never showed up on the x ray. It is still fractured, and has a new fracture and not healed, they think the healing process was hampered by the radiation to the femur and the chemo. My immune system and body is so beat up from everything.
Anyway, SS approved my disability within 2 weeks, and they back paid me for one year. I am a very organized person and have documented everything from day one, so I had a lot of info. I also had just got a second opinion from Mayo clinic in January so I had all my medical records that I could send to SS too. I am now considered stage 4, incurable..but that does not mean that I am terminal!!! A lot of people live with incurable diseases, like diabetes but it is manageable. That is what docs will do for me, they will treat each recurrence, hopefully they will be able to keep them far apart.
Did they check you out for other primary sites? If they couldn't find any why do they say you have metastatic VC automatically? That was original thought with me, but nothing else ever showed up and from what I understand a cancer is defined by cell type and original site. That is why the tumor in my femur bone was not considered bone cancer it was vulvar cancer, because the cells were identified as vulvar cancer from original pathology.
From my own research, I found that this VC in particular is more common in women in later years, 70-80 who are well past menopause. I know the statistics don't look good, but please don't hang your hat on those numbers. We are all indivuduals and our personal health plays a big part in how the cancer acts in the body. I know that with 2 metastes so close together, it is not good for me, but I truly believe that I will beat those statistics, I will be a trailblazer! My gyn onco is a teacher of oncology and in the beginning he always had medical students with him and I was okay with that because I want the new generation of doctors to be more aware of this cancer, so they can identify it sooner and help women.
Yes, we both are rare jewels! My radiation oncologist said I should buy a lottery ticket! haha. Where are you located?
You inspire. That is a wonderful. I am from a long line of cancer survivors in my family. So I will continue to fight. In my case the mucinous adenocarcinoma metastasis from some other vital organ according to the pathology report. It showed markers for all vital organs and showed no evidence of being from the vulva. Since this a rare cancer and not much is known it could in a very well be primary but there is no finding that can prove this. All cancer tests available were performed for cancer. The results showed no cancer. The hope was that the primary source would be in the layers of the skin of the vulva. That was not the case. After much discussion among professionals they were unable to stage the cancer. At best the guess the cancer is stage is 1B, which is very good. I am located off the East Cost of VA, near Williamsburg. I applied on my SSD after my second surgery in Feb. 2013. I am waiting for a decision. Norfolk VA has the poorest scores in the US in processing SSD, the average time 8 months. I have several medical issues, all very normal for my age. Medical age and issues say I am 60 not my chronological age is 55. I am not certain about young or old. But I have much party in my soul and heart. I pray that helps. I completed Menopause by age of 50 due to many female issues and a hysterectomy at age 40.
Has anyone tried the Women's Cycling Underwear with Silica Cushion of High Breathability for comfort in the Vulva? Is there a product for women to cushion our poor missing parts? Mine hurt so bad to have anything touch it.
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