Vulva cancer

annett

Well finished Pet Scan looks good except for mass. Maybe a couple suspect suspect nodes which will get checked in surgery which will be Sept 9th 2015. Can't wait to get this mass out! Any comments on how the surgery heals in that area or advice. Thanks Annett

 

NoTimeForCancer

annett, vulvar cancer is

annett, vulvar cancer is probably one of the more rare gynecological cancers.  This thread can be a little quiet but hope someone can chime in and give some advice. 

Prayers for you dear!

annett

NoTimeForCancer said:

annett, vulvar cancer is

annett, vulvar cancer is probably one of the more rare gynecological cancers.  This thread can be a little quiet but hope someone can chime in and give some advice. 

Prayers for you dear!

NoTimeForCancer

Thank you for the reply. I appreciate it. I do keep checking back in here and there. Prayers to all

 

annett

Update

Have had all pre-surgery tests completed now. It has been confirmed I have stage 3 Vulvar squamous cell cancer. The Doc said she wants to remove all lymph nodes in groin area. Then I get rad and chemo concurrently. Then if mass does not shrink she will do surgery on it. So for now just hanging in until Sept 9th.

 

ccfighter

annett said:

Update

Have had all pre-surgery tests completed now. It has been confirmed I have stage 3 Vulvar squamous cell cancer. The Doc said she wants to remove all lymph nodes in groin area. Then I get rad and chemo concurrently. Then if mass does not shrink she will do surgery on it. So for now just hanging in until Sept 9th.

 

I'm sorry that you have found

I'm sorry that you have found yourself here in the cancer battle but glad you found us on CSN.  It sounds like you have a good plan in place and are moving forward toward your cure.  There are a few others here with vulvar cancer that post occasionally.  I have cervical cancer so don't have a whole lot of info on your specific type of cancer, but wanted to say that you will do great, and be through it before you know it.  Back to a clean bill of health.  Hugs and best wishes for a speedy recovery.

NoTimeForCancer

annett said:

Update

Have had all pre-surgery tests completed now. It has been confirmed I have stage 3 Vulvar squamous cell cancer. The Doc said she wants to remove all lymph nodes in groin area. Then I get rad and chemo concurrently. Then if mass does not shrink she will do surgery on it. So for now just hanging in until Sept 9th.

 

annett, with the removal of

annett, with the removal of lymph nodes it can lead to lymphedemia.  That's ok, it is better to know in advance as there are things you can do.  The lymph nodes, as you may know, remove fluid from your body and it is a pretty neat network throughout your body.  Most of the women with gynecologic cancer have some form of a compression garment, pantyhose, knee highs, etc....so check with your doctor if you can get your leg measured now so they will know what your leg was BEFORE surgery and can be ready to start treating if if fluid builds up.

I am not trying to scare you, just trying to help prepare you.  I remember thinking I had a blood clot since my leg was swollen, and after finding out it wasn't from an ultrasound, was determined to be lymphedemia.  The physical therapist who specialized in therapy for cancer patients, had to measure my leg and kind of guess when it started to look like the other one and I thought to myself, "Self - this had to be a know, possible side-effect.  Why wasn't I prepared???" 

Maybe you can see if your doctor can recommend one of these therapists.  I wish I had known in advance.

annett

NoTimeForCancer said:

annett, with the removal of

annett, with the removal of lymph nodes it can lead to lymphedemia.  That's ok, it is better to know in advance as there are things you can do.  The lymph nodes, as you may know, remove fluid from your body and it is a pretty neat network throughout your body.  Most of the women with gynecologic cancer have some form of a compression garment, pantyhose, knee highs, etc....so check with your doctor if you can get your leg measured now so they will know what your leg was BEFORE surgery and can be ready to start treating if if fluid builds up.

I am not trying to scare you, just trying to help prepare you.  I remember thinking I had a blood clot since my leg was swollen, and after finding out it wasn't from an ultrasound, was determined to be lymphedemia.  The physical therapist who specialized in therapy for cancer patients, had to measure my leg and kind of guess when it started to look like the other one and I thought to myself, "Self - this had to be a know, possible side-effect.  Why wasn't I prepared???" 

Maybe you can see if your doctor can recommend one of these therapists.  I wish I had known in advance.

thanks"Notimeforcancer" for the reply

Thanks for the heads up. My gyn onc did mention lymphedemia. However, asking and measuring ahead just in case is a great suggestion. I made a note so I can call and discuss it with them. If you or anyone else has more info I will gladly take it all down. Smiles you have a great day! Annett 

annett

ccfighter said:

I'm sorry that you have found

I'm sorry that you have found yourself here in the cancer battle but glad you found us on CSN.  It sounds like you have a good plan in place and are moving forward toward your cure.  There are a few others here with vulvar cancer that post occasionally.  I have cervical cancer so don't have a whole lot of info on your specific type of cancer, but wanted to say that you will do great, and be through it before you know it.  Back to a clean bill of health.  Hugs and best wishes for a speedy recovery.

CCfighter Thank you

CCfighter, Thank you for taking the time to comment. It means a lot and I too am glad I found this site.

Lovingly, Annett

funbeadgirl

annett said:

thanks"Notimeforcancer" for the reply

Thanks for the heads up. My gyn onc did mention lymphedemia. However, asking and measuring ahead just in case is a great suggestion. I made a note so I can call and discuss it with them. If you or anyone else has more info I will gladly take it all down. Smiles you have a great day! Annett 

Sentinel node biopsy?

Hi Annette, I'm sorry you have to go through this, I have vulvar adenocarcinoma, it is different than your type but I did have a partial radical vulvectomy back in 2009. I would highly suggest that you ask your surgeon about Sentinel Node Biopsy and do some reading about it on American Cancer Society website. I did not want all my lymph nodes removed and requested my surgeon to do the SNB, your doc will be able to explain to you if this is a viable option for you. It might be best to contact doc now before surgery, in case he needs to set up differently for the surgery. Cancer is different in each person, so don't be concerned if he recommends something different than what another person has had, but it doesn't hurt to ask. I wish you the very best and hope you get through this successfully! Be strong!

annett

funbeadgirl said:

Sentinel node biopsy?

Hi Annette, I'm sorry you have to go through this, I have vulvar adenocarcinoma, it is different than your type but I did have a partial radical vulvectomy back in 2009. I would highly suggest that you ask your surgeon about Sentinel Node Biopsy and do some reading about it on American Cancer Society website. I did not want all my lymph nodes removed and requested my surgeon to do the SNB, your doc will be able to explain to you if this is a viable option for you. It might be best to contact doc now before surgery, in case he needs to set up differently for the surgery. Cancer is different in each person, so don't be concerned if he recommends something different than what another person has had, but it doesn't hurt to ask. I wish you the very best and hope you get through this successfully! Be strong!

Thanks funbeadgirl for the

Thanks funbeadgirl for the heads up I am making a list of questions to call and ask before my surgery. I will add this one. I believe it was addressed in the beginning but I can't remember how it turned out. Best to inquire again.

Thank you kindly, Annett

annett

stage 111 vulvar

Well I have been told officially I have stage 111 Vulvar Cancer and am 8 days away from surgery. Not looking forward to it much. They going after lymph nodes first and try to shrink mass/lump then a second surgery if needed. Sheesh just killing time here I guess.  Love and prayers to all, Annett

 

Judemo

annett said:

stage 111 vulvar

Well I have been told officially I have stage 111 Vulvar Cancer and am 8 days away from surgery. Not looking forward to it much. They going after lymph nodes first and try to shrink mass/lump then a second surgery if needed. Sheesh just killing time here I guess.  Love and prayers to all, Annett

 

What a shocker

Annett, I'm really sorry about what your going through.  That just plain sucks.  I don't have vulva ca but deal with endo-cervical adenocarcinoma.  I actually have not been on here for some time due to a new job and family matters but I did happen to read the thread you started.  Please lean on us girls here ok?  We are here for you.  It's all such a whirlwind isn't it?  You find out the news and then bang! Your life changes and now your focused on your DX!!!  I do recall thinking the worst when I was first DXd! I was so nervous and anxious! But I gathered as much information as I could and learned so much from the wonderful gals here on CSN!!  They literally put me at ease after explaining to me that I probably was NOT going to die anytime soon! LOL, but instead, told me to relax, take a deep breath, make a list of questions to bring to the docs.   They began explaining to me about my type of cancer and they shared their stories with me and I began to feel better.  Knowledge really is power.  I asked a gazillion questions on this website.  I received a gazillion answers and that is how I learned about my type of cancer.  I was then able to ask the right questions at my appointments.  I did not like my first gyn onc DR and have had to change gyn oncs, but you ask as many questions as you need to and take someone with you to all of your DR appts.  My husband came with me to all of my appointments.  It helps to have someone remember what has been told to you.  My first DR just didn't want to talk to me or explain anything to me.  I highly recommend 2nd and 3rd opinions, as well as all the other women on here (they are the ones who encouraged me to get a 2nd and 3rd opinion and I am so greateful for their encouragement!).  You are going to get through this!!  Another great website for vulva ca is Mcmillan cancer support website.  You might get more ressponses from the ladies there about what you are going through as there are many more people with vulva ca actively on that website daily who share your exact DX.  They can walk you through step by step what to expect ok?  So go check out that website.  I was initially told I had endometrial cancer that spread to the cervix and also VIN III and VAINIII. I didn't end up having the VIN/VAIN (was wrongly DXd).  My original gyn/onc never apologized for that!  They never acknowledged their mistake!  They put me through a lot of turmoil for nothing.  Anyway, we will be thinking about you and keep us informed on your progress ok?  Here is the link to Macmillan

www.macmillan.org.uk/

NoTimeForCancer

annett said:

stage 111 vulvar

Well I have been told officially I have stage 111 Vulvar Cancer and am 8 days away from surgery. Not looking forward to it much. They going after lymph nodes first and try to shrink mass/lump then a second surgery if needed. Sheesh just killing time here I guess.  Love and prayers to all, Annett

 

Annett, I am so sorry. All of

Annett, I am so sorry. All of it is overwhelming.  Take a breath and tell us how you are doing. 

annett

Surgery Update

First thank you gals for your support and prayers! I had a Bilateral sentinal inguinal lymph node dissection and a  full inguinofemoral lymph node dissection. I also had Exam by radiology under anestesia checking the Radical Vulvectomy part out. This was to determine how best to shrink that lump/mass trying to prevent surgery on labia (vulvectomy). I had a women gyn onc surgeon, her assistant was a women gyn onc surgeon as well. I actually had a team of most all women. I must say I believe they are very wonderful ladies. Very competent and capable. I am doing great after the procedure and only spent one night at hospital. I have about 30 staples (15 each side) and still have 2 drain tubes. I will get further results from pathologists. Dr. says she is very optomistic about my cure.They have set up all appts for follow ups and chemo. I see radiologist on 17 to determine that end of things. I begin chemo on the 21st and am scheduled for 6x once a week for 6 weeks.  I will also get staples out the 21st. I don't know about the fricking drain tubes tho lol. I will try to update as I continue this journey. I have wonderful family and physicians. Praise the lord I am doing great and having no pain from surgery! Prayers,Hugs and Blessing to all. Annett  

NoTimeForCancer

annett said:

Surgery Update

First thank you gals for your support and prayers! I had a Bilateral sentinal inguinal lymph node dissection and a  full inguinofemoral lymph node dissection. I also had Exam by radiology under anestesia checking the Radical Vulvectomy part out. This was to determine how best to shrink that lump/mass trying to prevent surgery on labia (vulvectomy). I had a women gyn onc surgeon, her assistant was a women gyn onc surgeon as well. I actually had a team of most all women. I must say I believe they are very wonderful ladies. Very competent and capable. I am doing great after the procedure and only spent one night at hospital. I have about 30 staples (15 each side) and still have 2 drain tubes. I will get further results from pathologists. Dr. says she is very optomistic about my cure.They have set up all appts for follow ups and chemo. I see radiologist on 17 to determine that end of things. I begin chemo on the 21st and am scheduled for 6x once a week for 6 weeks.  I will also get staples out the 21st. I don't know about the fricking drain tubes tho lol. I will try to update as I continue this journey. I have wonderful family and physicians. Praise the lord I am doing great and having no pain from surgery! Prayers,Hugs and Blessing to all. Annett  

Annett. you really do "sound"

Annett. you really do "sound" good!  And it sounds like you have a good team on your side!

Ask us anything and keep kickin' it!

ccfighter

annett said:

Surgery Update

First thank you gals for your support and prayers! I had a Bilateral sentinal inguinal lymph node dissection and a  full inguinofemoral lymph node dissection. I also had Exam by radiology under anestesia checking the Radical Vulvectomy part out. This was to determine how best to shrink that lump/mass trying to prevent surgery on labia (vulvectomy). I had a women gyn onc surgeon, her assistant was a women gyn onc surgeon as well. I actually had a team of most all women. I must say I believe they are very wonderful ladies. Very competent and capable. I am doing great after the procedure and only spent one night at hospital. I have about 30 staples (15 each side) and still have 2 drain tubes. I will get further results from pathologists. Dr. says she is very optomistic about my cure.They have set up all appts for follow ups and chemo. I see radiologist on 17 to determine that end of things. I begin chemo on the 21st and am scheduled for 6x once a week for 6 weeks.  I will also get staples out the 21st. I don't know about the fricking drain tubes tho lol. I will try to update as I continue this journey. I have wonderful family and physicians. Praise the lord I am doing great and having no pain from surgery! Prayers,Hugs and Blessing to all. Annett  

Annett,
im so glad your

Annett,

im so glad your surgery went smoothly and you have a good plan in place for curative treatment.  This all sounds great.  Keep recovering and building back your strength.  You are going to do great.  Hugs.

annett

NoTimeForCancer said:

Annett. you really do "sound"

Annett. you really do "sound" good!  And it sounds like you have a good team on your side!

Ask us anything and keep kickin' it!

Hello thanks for the reply

Hello thanks for the reply and I am kicking like crazy! Prayers and hugs to all, Annett

 

annett

ccfighter said:

Annett,
im so glad your

Annett,

im so glad your surgery went smoothly and you have a good plan in place for curative treatment.  This all sounds great.  Keep recovering and building back your strength.  You are going to do great.  Hugs.

Thank you as well CC and hugs

Thank you as well CC and hugs back at you! Annett

annett

Update post op

 I am 4 days post op and doing great! Doing well. Trying to rest get ready for the next round. Hope you all are well and Hugs. Judemo I signed up at the MacMillan site. I like it it is great. Thank you Annett

annett

Update

It seems I will not be getting chemoradiotherapy for a couple of weeks. I need more healing and iinfection is in left tube. Got antibiotic for that. Staples are good come out 21st. I only had 1 positive node on right side same side as lump. Left side was clear. Won't have rad on left. Just on right and tumor. Sounds like chemo once a week and rad 5 days a week for 6 weeks when it starts. Doctors are optimistic that they can cure me. Hope everyone is good. Prayers , annett

annett

3 weeks post op

Hello all, I have still got tubes in from the node surgery. Hoping to get them removed in a couple of days. I am very anxious to proceed to the treatmnent part of this journey even tho it may be a rough road. I want to start ridding myself of this cancer. Patience is not on my side. I hope to start the first week of october as stated before. I am a couple of weeks behind due to that infection at node site which took a bit to get rid of. I am feeling pretty good all in all. I do have inner thigh numbness and soreness which is common in extensive groin node surgery, I have been told. Just venting and waiting. Hugs to all, Annett