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Vulvar Cancer Survivors

Nancytahoe's picture
Nancytahoe
Posts: 32
Joined: Feb 2005

I would really like to hear from any of you that have survived your vulvar cancer, and the treatments.
Please post an update on yourself on this web site, so others, including myself can followup on you. I have noticed, there are several people who posted their stories on the personal web pages, but no followup.

As a two year vulvar cancer survivor, I want to know how others are doing.

Please share your current status, so others can read, and learn.

Nancytahoe

DEBBIE617
Posts: 1
Joined: Apr 2004

I have been cancer free for nine years. I first had vulvar cancer in 1997 and had surgery in August of that year. I then had uterine cancer the following year and again had surgery in April 98. I now am a clean bill of health and I make sure if there is anything unusual on my body, I get checked out. I would love to hear from other survivors of vulvar or uterine cancer.

Nancytahoe's picture
Nancytahoe
Posts: 32
Joined: Feb 2005

I am so glad you posted the fact that you are a 9 year vulvar cancer survivor. I have been in touch with 6 other ladies with vulvar cancer. 3 of them made it, although they had a very rough time with damage from the radiation. One woman did die March 1st. The other 2 just contacted me this year. Terri or twillow on this site is the latest one to have contacted me. She would love to hear that you have survived 9 years. Rhonda, or cancernomore on this site, has had the most problems with her recovery.
You may have seen my postings. I refused radiation after my surgery. I took Protocel 50 a non-toxic alternative, and have been cancer free since Jan 6th 2004 which was the date of my surgery. I was too afraid of damage from radiation in that sensitive area. Did you have chemo and or radiation? I imagine back in 1997 there wasn't much known about vulvar cancer. Even on this site, there are less than 300 under vulvar cancer.

I really appreciate hearing from you. My other cancer buddies as I call them, have all been very supportive of each other. It's nice to hear a survivor story. Most of the "hits" I get off this web site, are newly diagnosed patients, that want info.

Thanks for your positive message.

Nancytahoe

kevann
Posts: 7
Joined: Nov 2007

don't know how to use this? anyone there?

marci mustoe
Posts: 6
Joined: Oct 2011

I'm going to research Protocel 50. I too am afraid of the side effects of radiation on this particular area. I don't know if you'll see this-so many years later= but wanted to try to connect. Even if I don't hear from you, it was very helpful to read what you had to say. Thanks!! Marci

marci mustoe
Posts: 6
Joined: Oct 2011

I'm not sure how to get in touch. I had surgery on October 10th--and yesterday the radiologist ( and my oncolgist) recommended radiation. I am leaning towards refusing this treatment and would like to hear more about the alternative you chose--Protocel 50. I don't know if you still follow this online-support--but would like to hear from anyone about alternative treatments, post surgery , to radiation. My cancer doesn't appear to have spread to the lymph nodes. The reason for the recommendation was based on a smaloler than desirable clear edge on one side of the tumor--only able to get 7mm. instead of 8 or better, as it was right next to the urethra. All other paramets were negative. Any input would be helpful. Thanks so much , Marci

nsquirrely
Posts: 50
Joined: May 2007

Hello
It is nice to see that there are others here that have been dxed and treated for vulvar cancer.
I was dxed last year in March and would enjoy being in contact with others who have had to deal with this type of cancer.

leeaquinn68
Posts: 2
Joined: Dec 2008

I dont know if u stll check this...I would love to hear some good news. I had surgery 5 weeks ago and im pretty scared and feel all alone. My family is very supportive but they dont understand. I have so many questions and dont know who to ask

nsquirrely
Posts: 50
Joined: May 2007

Hi lee I do check out the boards ar least every other day or so when I get a chance. I've tried several times to make contact with someone who has gone thru it. It would be nice to be able to talk with someone who understands this cancer.
If you want you can email me @ nsquirrely@aol.com
Hugs and prayers,
Happy Holidays
Shirley

funbeadgirl
Posts: 150
Joined: Jan 2009

Hi there,
I had surgery 3 weeks ago. Will have to go thru radiation, as it spread to 1 lymph node. I hope you are doing well. I guess for me, not knowing about this cancer and all that I found
out about since my diagnosis has made me mad. Mostly because women are not educated about the outside of their bodies. I am amazed at the blank stare I get from others when I tell them what I have, then when I have to go into the description, they always make a face. I feel for you and the loneliness it brings. Talking to someone else that has gone through this would be very valuable to me.
I am 55 yrs old, and otherwise a very healthy person. My first diag. came back clear, doc. removed rest of lump and decided to send it in again just because he did not like the looks of the tissue. I consider myself very fortunate. I have a very positive outlook and hope you do also.
Any support that I can give you I would be glad to give. Hang in there!

Best wishes, Suzie

poopsie
Posts: 8
Joined: Feb 2009

my name is pam The 9th of January I had surgery on the vulva and anus area to remove pre-cancerous cells . The surgery went and the pain was so bad it seemed like whatever they put me on it didn't take the pain away . After only 6 days the hospital wanted me to go back to remove the stitches. I told them I couldn't walk or drive that far in this much pain. I come back the 26 of january, when I went back to see the dr. at this time he removed the one the wouldn't dissolve on there own. He told me then that the cancer spot at the anus was cancer and i was given 3 choices . 1. let it go and prey it don't kill me . 2. colostomy bag. 3. chemo. or radiation. but what I didn't know at that time was he removed my clitoris, I found out with a mirror and what a shock it was . I now feel like a freak and not only did they do the vulvectomy twice now I can't feel like a woman. I now have the doctor appt for them to make the spot for the radiation and it just had to fall on my birthday feb. 27th. I cant have chemo , my counts are too low and this isn't an option for me. I never went through this and it scares me so bad . will I be able to walk or just lay down all the time. I have nothing left down there and now I fell less attractive to my husband, what do you do? Life without feeling any excitement during sex? Is there anyone else feeling this alful ?

funbeadgirl
Posts: 150
Joined: Jan 2009

Dear Pam,
I am sorry about all the pain you are in, and having a hard time with recovery, my heart goes out to you. My vulvar cancer was stage 3, but in only 1 lymph node, so I will have to have radiation, which I will start soon. I was diagnosed 12/23/08, surgery 1/12/09, so it went pretty quick, but I did a lot of research on the internet to gather as much info as I could to make a decision. My surgery was not as radical as yours, and did not affect my anus, but I totally get where you are coming from relating to the sexual dysfunction issue.
If you are not comfortable with your doctor 100%, please consider another opinion for further treatment, you deserve to be heard with all your fears and needs.
You are not a freak, you are a women that has been put in a freakish nightmare situation.
Please hang in there sister, don't be afraid to question your doc and tell him what you need.
Best wishes for a brighter day! Suzie

poopsie
Posts: 8
Joined: Feb 2009

I never thought there were so many people out there that cares so much. My prayers are with you also and I hope we remain friends through all of this. I would love to call you a friend. I am comfortable with my doctor 100% and trust them so this is one less worry for me and thanks to your note I feel alot better ,thanks again Pam

nsquirrely
Posts: 50
Joined: May 2007

Poopsie
I am truly sadden to hear that yet another person is going thru this devastating cancer. I was dx with vulva squamous skin cell carcinoma stage three with spread to two lymph nodes. I had a partial vulvectomy and removal of a total of 15 lypmh nodes in the groin area. After the surgery, I had 8 weeks of radiation. At that point, they did a catscan and the results were clear. I had three different doctors involved in my treatment. My gyn, a gyn oncologist and a radiation oncologist. I'm now two years out from my dx and due for a visit to my oncologist in March.
I can tell from your posting that this has been a very trumatic experience for you. I am so sorry you are going thru this. I don't know if you are type of person who wants to know everything they can tell you but I was and still tend to want to know everything there is to know. The difficult part is knowing what to ask. It not a very talked about type of cancer and even the doctors don't seem to want to go into details about it. The best advice I can give you is to ask questions and insist on details about everything thing they intend to do. Even the smallest detail left unsaid can be devastating later on for you. One example would be they never told you about the removal of your clitoris prior to the surgery.
Radiation treatments were a positive experience for me. I had an excellent doctor and team working with me for it. I hope that you have a good experience and that it is successful for you.
Please, feel free to contact me. I will do my best to support you thru your treatment.
Hugs and prayers
Shirley

poopsie
Posts: 8
Joined: Feb 2009

There are so many people out there that cares so much. My prayers are with you also . I would love to call you a friend. this has been a very trumatic experience and I wish no one else would ever have to go though this but we all know it isn't that way in life.I wrote everything down i wanted to ask the doctors . As far as the removal of your clitoris it would have been nice if they would have told be prior to the surgery. I guess in my state of mind it was best to wait, who really knows. I hope the Radiation treatments are a positive experience for me as well. I wish you success with your recovery. Once again thank you for contacting me. A Friend always Pam

funbeadgirl
Posts: 150
Joined: Jan 2009

Just an update on my treatment. I meet with rad/onco yesterday and had my consult and set up for radiation. I will begin my treatments on Feb. 25th, and will have to have 28 in total. I really hit it off well with the doctor, so I am felling confident that I will receive good care. I am a little concerned about the type of clothing I will be able to wear once the burns start, any suggestions?
Hope you all are doing great and look forward to Spring, as I am!
Best wishes to all. Sue

WOMAN I AM
Posts: 2
Joined: Apr 2009

HI, I RECENTLY 04/02/09 HAD A PARTIAL vulectomy and well u know how it goes got any pointers on bathing and when does the swelling go down.they sent my noyds out will find out next week if spread didn't see any thing on the CT scan.but i am still scared i looked with the mirror also and was shocked i haven't let my mate see yet i don't think he will like not feelin very sexy .I have cousin whom had a total hys and she says sex issex yea right clitoris is pale pink not bright like it use to be numbness in thighs i know it takes time.

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

Hi,

it is possible to establish again an intimate sexual relationship with your husband, but you will probably need to seek the help of a qualified sexual therapist, who are often very sensitive and practical in terms of achieving what you want.

AussieMaddie

Wendy Segler
Posts: 41
Joined: Sep 2011

Hi, what is the latest on your cancer? Hope you are well! Please respond if I can help as a nine year survivor. Wendy

Wendy Segler
Posts: 41
Joined: Sep 2011

Hi, what is the latest on your cancer? Hope you are well! Please respond if I can help as a nine year survivor. Wendy

marci mustoe
Posts: 6
Joined: Oct 2011

Hello Wendy,

You are one of the most recent contributors. I don't remember if you wrote about your treatment. I'm glad you're a nine year survivor!! I am a a 3 week ( almost ) survivor, post surgery. My big dilemma now is whether to pursue any other forms of treatment. My oncologist and the radiologuist, both recommend radiation. I had stage 1-B cancer with no evidense of metastasis. The only reason they rec. radiation is that they only got a 7mm edge on one side of the tumor as it was right next to the urethra. Otherwise, they wouldn't rec. it. I'm not wanting to do radiation in this area--but wish I had more info. It's an uncharted territory for the most part I'm glad to have found this web site--otherwise I don't know if anyone out there knows what this is about! Write if you have time. Marci

Wendy Segler
Posts: 41
Joined: Sep 2011

Hi Marci, so sorry I had not gotten back to you sooner. Would like to help you in any way possible! Please email me at Wendysegler12@gmail.com So it has been about a month since your surgery how are you feeling? Are you having in home nursing care? I had infections when released from hospital at Loma Linda in Calif. What state are you in? I did not have to have radiation, so I can't tell you first hand, but have read and talked first hand with others who have, and because that's such a tender area they had horrendous burns and pain. When you read others stories, some mention using, I believe Prototol 70. I need to check that for accuracy, so email me for sure! I totally know the feeling of wanting and needing to talk with someone, (anyone) who has been through it. I kept begging the doctors to connect me with someone who had gone through the same thing and they never did, and the Cancer Society only had one lady for phone connection, and it had been 20 years earlier, and she had forgotten a lot. It would have helped me tremendously if I had a site like this to reach out to. Even just the fact that every woman I even mentioned Vulva Cancer too,they didn't even know what a vulva was, much less want to talk about it. My heart bleeds for you knowing what you must be going through!!! So email me soon! Wendy

WOMAN I AM
Posts: 2
Joined: Apr 2009

hi, new round here but we are one in the same,how have you been doing i am 2 weeks post surgery so you know i have tons of questions,bathing,panties how to handle your period

funbeadgirl
Posts: 150
Joined: Jan 2009

Hope you are doing well after your surgery. I had surgery in January, and just finished 5 1/2 weeks of radiation. As far as clothing goes, I found that no underwear is probably best,although I have wore mens cotton knit boxers ( the loose kind)under a skirt, which is also very comfortable. I actually like having the freedom of not wearing underwear now, but I do miss wearing jeans, but soon I will be back in those also.I also wear loose cotton knit pants, maybe a size or two larger than you would normally wear.. I also just wore a night gown while around the house, this also helped with the hot flashes I get since the radiation fried my ovaries. I don't expect to get a period anymore, at least that is what doctor told me. I shower everyday,careful not to use very hot water, and using a gentle cleanser like Dove, something without fragrance, and then patting dry very carefully. I still am healing from the radiation burns, so I am not sure how I will feel after everything is healed, you know the anatomy is different now, and I think sitting will be something to get used to with having only 1/2 a vulva. I guess bike riding is gone forever.
I actually had my period the first day I started radiation, and I had to use a tampon, not very comfortable. I don't know what I will do if I do get a period, I am not comfortable with underwear yet, since that area still has burns that are healing. If I can give you any more insight let me know.

margaretwood
Posts: 6
Joined: Sep 2011

hi, i was diognosed nov. of 2008. three rounds of chemo then radical vulvectomy and more chemo. im doing really good, i think. i just keep on truckin.

Wendy Segler
Posts: 41
Joined: Sep 2011

Hi Margaret, Am so sorry you had to go through so much. I also had a vulvectomy nine years ago. I had lymph nodes removed on both legs. They still act up periodically this much later, very puzzling! I want you to feel free to talk to me,or ask questions. I just discovered this site. It would have been a Godsend if I would have had something like this back then, I had nothing. Unless someone has been through it they can't understand,and there seems to be so little research on this particular type. Hope you will respond and maybe we can help each other! Wendy

marci mustoe
Posts: 6
Joined: Oct 2011

Hi Margaret, Do you have any thoughts about this? What was Chemo like for you? thanks for any info. Marci.

Merilee
Posts: 1
Joined: Apr 2009

HI everyone. My cancer is a little different than most of you. I had cancer of the Bartholin's gland. They surgically removed most of it but i still had to go through chemo and radiation. I finished treatment in November of 2007. The doc tells me that the cancer is gone but i am still having a lot of pain and discomfort from the radiation burns of the vulva and vagina. My oncologist is suggesting killing the nerves to that area and my radiation oncologist is telling me that after the two year mark we can do a skin graft or skin flap. Have any of you had to go through any of this? does anyone have suggestions for other ways to get this area to heal? It got better for a little whils and then last May we did needle biopsies to see if the cancer was gone and things have been getting worse from there. I went through 40 hyperbaric oxygen treatments just after Christmas - that was no help at all. Just a huge waste of my time and money. I am getting desperate for some relief. I have turned into a loritab junkie (well not really) but it is to the point now that even they don't help that much and they are tearing up mu stomach. I'm tempted to let the doc go ahead and kill the nerves but I am afraid that I would get an infection or some other problem adn no know it until it was really bad adn I am afraid that it might interfere with the graft if we go ahead with that in a few months. I am very interested to see if anyof you have had similar problems.
Merilee

Arlene and Bill
Posts: 1
Joined: Mar 2011

My wife recently had "radiation to kill" and Brachy Therapy for Vulvar Cancer, Stage 4, Squamous Cell. She had cancer on her bladder, anterior vaginal wall, urethra and some lymph nodes. Recently her PET Scan did not show any cancer however there has been a lot of damage to those areas that will require major surgery in May. Approximately a month after completing the Brachy Therapy she bounced back, had some control of her bladder and was getting around fairly well. However, she developed serious pain in the vulvar area which was determined to be caused from radiation burning. She has begun Hyperbariatric treatments which will take a while for some results. She still has a lot of pain and takes 2 MG of Hydromorphon every three hours and augments it with Arthritic Strength Tylenol 650 MG several times a day. She has difficulty standing and sitting and spends most of her day lying down. I have two questions. Is there a better pain killer for her? Is there anything she can do nutrition-wise, supplements, etc. to help cure her radiation damage. Thank you Bill and Arlene

Wendy Segler
Posts: 41
Joined: Sep 2011

Hi, so sorry about your cancer! I also had stage 4 nine years ago. Can you familiarize me with brachy therapy please? Also, did she have lymph nodes done? How did her surgery in May come out?Nutrition wise, I would recommend as close to a Mediterranian Diet as possible. I wish you both all the best and will be praying adamantly for you both. Hope to hear from you. Wendy

marci mustoe
Posts: 6
Joined: Oct 2011

I am trying to determine whether to go with the rec. of radiation. I have Stage 1-B--so I've had surgery, but all indications are that it hasn't spread anywhere elase. the reason they want to do radiation is that one side of the tumor was so close to the urethra that they only could get a 7mm. clear margin. they want 8 or better. All other perameters for radiation were negative. I am very fearful of this type of radiation. What do you think? It is so wonderful to find other people to communicate with about this situation. I feel very alone. Thanks, Marci p.s. So sorry to hear what you've had to go through!

marci mustoe
Posts: 6
Joined: Oct 2011

I am trying to determine whether to go with the rec. of radiation. I have Stage 1-B--so I've had surgery, but all indications are that it hasn't spread anywhere elase. the reason they want to do radiation is that one side of the tumor was so close to the urethra that they only could get a 7mm. clear margin. they want 8 or better. All other perameters for radiation were negative. I am very fearful of this type of radiation. What do you think? It is so wonderful to find other people to communicate with about this situation. I feel very alone. Thanks, Marci p.s. So sorry to hear what you've had to go through!

xlopez
Posts: 2
Joined: Feb 2012

My grandmother is 86 yrs and going through the same side effects as your wife.. my grandma got radiation for vulvar cancer ....how is your wife doing now? Did you finally find something that really help her cope with the pain?...I want to help my grandma and will really appreciate any information you can provide me with regarding remedies!! She now uses Domeboro baths, pain killers,and some creams, with no success in alleviating her. Is so sad to see her in pain. Hope your wife is doing good by now!! thank you very much

margaretwood
Posts: 6
Joined: Sep 2011

i never had radiation but had chemo and surgery. my croich always feels numb and down my inner thighs. its very uncomfortable but i figure its better than being dead. i try to focus on the positive. hope you get better.

persion
Posts: 2
Joined: Sep 2009

Hi Nancy, I just came back from the gyn, and she said I had a lesion which was HPV related and was high grade to moderate grade dysplasia. So, Monday they will remove the rest of the lesion. I have been very frightened as I have had breast ca.before and even though she said this was not ca, it scares me extremely bad and brings terrible memories and thoughts I wanted to never relive.The dysplasia is from high to moderate but before I looked at the lab, the dr, said it fell in the mediam but the labs said high to med.Why would the dr. say that?
I do not even know how HPV came about. It is all so embarrasing and scarry. I had a pap test at a UTC center and it has been 2 weeks and I went by there and they said their fax and machines was down...UGH. The womens center needs those results. I do not even know what they are. I had previously a colpscopy and something like a ultra sound but it went inside the vagina into the pelvic area. I hope u write back.

Wendy Segler
Posts: 41
Joined: Sep 2011

Hi Persion, Please post on your site as to how you are doing now. Us new ones would really like to know. Thanks. Wendy Segler

Wendy Segler
Posts: 41
Joined: Sep 2011

Hi Persion, Please post on your site as to how you are doing now. Us new ones would really like to know. Thanks. Wendy Segler

mplankmplank
Posts: 2
Joined: Sep 2009

Hi: I have not been diagnosed with cancer yet. I have had 4 different bx's and one surgical partial vulvectomy. They have all come back pre cancer. I am grateful for that. I got my last test results today and although they showed no cancer the doctor wanted me to join this web page for support. I have been dealing with the HPV since 2/08. I am only 39 and I am nervous that this will be a life long battle. It is embarrasing for me to talk to even family members about all this. The responses I have recieved from the few I told have been crued and hurtful. I know my case is different then the other ones here but I still hope that I can talk to some one about my feelings.

CB113
Posts: 1
Joined: Sep 2009

hi mplankmplankadd,
I'm in a somewhat similar situation. I'm 26 years old, and was told I had pre-cancer cells and VIN II after having a biopsy done by my gyn, though he told me he was certain I do not have HPV. I had the first of 2 partial vulvectomies 6 days ago by a gyn oncologist. The pathology report also came back with just pre-cancer for me, but some of the lumps have started to swell and bleed, and I am starting to worry. I can't sit down, and find it extremely hard to go to the bathroom. I'm normally an active person, and am finding this immobility and constant pain hard to take.

Does anyone know how long the average recovery is? Any suggestions for pain relief? I feel like I've tried everything!

Cris

mplankmplank
Posts: 2
Joined: Sep 2009

Hi Cris: It took me about 5 days before I could sit and walk normal after the partial vulvectomy. But it took another 2 weeks before using the bathroom didn't make things worse. I had to be very, very careful and keep the area clean and dry. I was told by my Gyn Oncologist to not use any soap, just water for cleaning. My problem was that by the time that area healed it was time for another bx. I am grateful that I have a great medical team here in Utah. I also have VIN11. The dr. wants me to just keep seeing every 2 months and have any suspious tissue removed.
I hope you feel better soon!
Melissa

margaretwood
Posts: 6
Joined: Sep 2011

i think you are blessed, pre cancer can be kept under control. you should be fine. about the partial vulvectomy, i had a radical. everything is gone pretty much, but im alive. so dont worry about what anyone else says. keep a positive attitude.

Wendy Segler
Posts: 41
Joined: Sep 2011

Hi Margaret, please also email me Wendysegler12@gmail.com as to what is the latest with your journey. Blessings Wendy

Wendy Segler
Posts: 41
Joined: Sep 2011

Hi, what type of pre cancer did you have? I have had lichen sclerosis, and actinic keritosis recently being treated for it is supposedly caused by sun damage, but I certainly didn't sun myself in the vulva area, and have not been out in the sun for at least thirty years. Please email me Wendysegler12@gmail.com and let me know how you are doing now. Wendy

margaretwood
Posts: 6
Joined: Sep 2011

the chemo was a walk in the park
the only bad thing was the loss of my hair. i never got sick and actually gained weight. i had taxol/carboplatin, the best
i just hit the 4 year mark. i fopund a few leisons and they were biopsied, hoping they come back benign
worst case they get removed.

margaretwood
Posts: 6
Joined: Sep 2011

the chemo was a walk in the park
the only bad thing was the loss of my hair. i never got sick and actually gained weight. i had taxol/carboplatin, the best
i just hit the 4 year mark. i fopund a few leisons and they were biopsied, hoping they come back benign
worst case they get removed.

margaretwood
Posts: 6
Joined: Sep 2011

the chemo was a walk in the park
the only bad thing was the loss of my hair. i never got sick and actually gained weight. i had taxol/carboplatin, the best
i just hit the 4 year mark. i fopund a few leisons and they were biopsied, hoping they come back benign
worst case they get removed.

xlopez
Posts: 2
Joined: Feb 2012

My grandmother is 86 years old and in 2010 went trough a series of chemotherapy and radiation to treat her Vulvar Cancer. I don't know the specifics of her cancer, because my aunt and her husband are the ones in charge of her, and never give to many details out. My grandmother was not aware that she had cancer, I really have no idea what they told her, they thought it was better in order to keep her optimistic. So she went through hell with both therapies, radiation in the area, left the skin sensitive so even urination is hell for her and chemo left her so confused that she didn't even recognize family members on a Christmas party. So a year has passed by after both treatments where completed with success, but her skin in the area is really affected by the radiation, too sensitive, and she constantly complains of pain and burning sensation, sometimes so strong that it wakes her from sleep. Its so heart breaking to see her complaining, and asking God to take her already. I was wondering if anyone here went through something similar and if there is any remedies you can suggest. She takes baths in warm water with Domeboro, and uses a few cream but with NO success, also they give her pills so she can sleep (advil pm). She is so old an it breaks my heart to see her suffering constantly with pain. She refuses to stay with out underwear even though alone in her room, which I think it would do her good, being without stuff in the area!! PLEASE HELP ME HELP MY GRANDMOTHER, I adore that woman!!

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