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Vaginal Cancer -squamous cell carcinoma

lyn08
Posts: 1
Joined: Aug 2011

I am 23 years old and just found out I have stage 3 vaginal cancer. First of all i found out i was pregnant sept 2010 and had a healthy son may 2011. During my pregnancy I had a lot of vaginal bleeding, from the get go I went to the emergency room in case there was something wrong with my baby, but every time they just said "oh its okay" and sent me home. This happened until I had the baby. Well what the doctor thought it was, was a cervical hood, as he called it and said after I have the baby he would just cut it out in his office easy as that. Well after I gave birth (c section) and came back to him for my follow up, he seen that it was too big to just cut out in his office and scheduled me for outpatient surgery a few days later. During my surgery he found a 8cm mass that he snipped out and sewed up and sent it in for a biopsy. Biopsy results came back as cancer. They sent me to a specialist, and he said it was VERy rare for someone this young to have this, it is usually seen in women 60+. Well as he was giving me an exam he said he could still feel the tumor and some. I went in for a PET CT scan the next day and the results came back as the vaginal cancer spreading to a lymph node about 4cm big. Does anyone have this or had this or know anyone that has.. it would be very helpful and i would be very greatful for anykind of information.. thank you

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

I'm sorry to hear of your diagnosis. I am a CC survivor. I wish you luck through all your about to endure. Enjoy your new baby.
((HUGS))

sunflash's picture
sunflash
Posts: 158
Joined: Aug 2011

lyn,
I'm also sorry to hear about your diagnosis. I, too, had vaginal cancer 4 1/2 years ago. Your doctor is right when he told you it was very rare. I was 54 when it was discovered, (stage 2). You're very young to have this, but I'm finding out that cancer knows no boundaries. I just wanted to let you know that this can be treated very successfully. I received external radiation along with weekly cisplatin. I also received internal radiation (brachytherapy) I know it's scary, but there is now no trace of the cancer left. There was also no lasting side effects from either the chemo or radiation.
I'll add you to my prayers for a complete recovery.

Wendy Segler
Posts: 41
Joined: Sep 2011

Hi, how long have you been a survivor? Also is cc carcinoma, cancer? Please post how you are doing now, and can also email me at Wendysegler12@gmail.com many blessings!!! Wendy

7414
Posts: 3
Joined: Sep 2011

I was diagnosed with vaginal melanoma last October. I am 38 and was told the same things as you were. The information is extremely limited from what I found. I am lucky enough to live near the Mayo Clinic and was seen there which was encouraging. So far I have had surgery, chemo, and Interferon. I will be starting either radiation or another immunotherapy (Leukine) soon. My tumor was larger than yours and we did not get clean margins but so far my scans have been clean. I would love to be in touch if I could help at all-Kim

DeeRose
Posts: 4
Joined: Sep 2011

Sorry for double posting, Kim, cause I know I just replied to you on another board, but I'd love to get in touch with you... I'm 24 and have a vaginal melanoma(well, initially they told me it was melanoma, now they say oh it could be severely atypical, we won't know for sure til we cut it out completely). The dermatologist I saw did a shave biopsy instead of a punch (ugh, I had to push her to do anything and didn't know at the time that punches give more accurate results). I'm concerned though because I have many other problems... from not officially explained chest pains to GI probs to fatigue and such. I really want to go to Mayo Clinic because I feel like I need someone to take a thorough look at my complete picture before I can confidently go into surgery (I don't trust my heart and lungs at this point, and my primary care doc hasn't been thorough), but I'm HMO and it's now looking like I'd have to wait too long while fighting to get referrals to go to Mayo.

Anyway, I'm writing you to find out if you had any other symptoms (I did have a CT scan which returned a 7mm unidentifiable nodule on my spleen and 5 mm one at the bottom of my L lung and another mole on my back I have to have removed) or if, as a lucky Mayo patient, you have any of their magic to share. I'm currently scheduled for a wide local excision but the specialists I've seen can't agree on whether I should have a colonoscopy/upper endoscopy first or afterwards. My excision surgeon hasn't been clear on recovery.

Thanks! I know I threw a lot of medical details at you but I'm pretty desperate.

mountainhome
Posts: 5
Joined: Sep 2011

My heart goes to you, I'm 51 and just had radical hemi vulvectomy I was stage one squamos cell carcinoma it was a roller coaster ride since I found out in Aug. Surgery was 2 weeks ago I have a very loving husband large family friend suppoet group. My greatest comfort was in God circumstances were not in my control so I gave it all to the Lord. I am recovering I did not have lymph nodes removed I was right at 1mm but I am going to have scans every 3 months to warch my nodes for any growth. I have worked up to 1/2 mile walks very slowly twice a day which has been good for me. I pray for you and your family and wish you the best of everything

DeeRose
Posts: 4
Joined: Sep 2011

Do you mind if I ask you what made you decide to go for the radical vulvectomy? I suppose they knew going into it what you had... I ask because I don't fully trust my surgeon even though he's supposedly highly rated and he's recommended a wide local excision to remove/retest a possible melanoma on my labia. I want to be sure he's not going with the less invasive procedure simply because I'm young--I want to get it all!

ladyaicha13
Posts: 2
Joined: Oct 2011

first of all ,im sorry for all of us ,whatever having a cancer or dealing with someone have one,both suffering my name is aicha ,im 26 years old ,my mum was diagnose with 3 stage of cancer in her ovarian last juin 2010 ,went to surgey ,after a while for chemo,and stopped for 6 months,but he come back last march ,this time i was pregnant sorry i forget to tell tht my mum didnt know about her illness,because if she does she will refuse to get throught the chemo ,...ect but after he cames back i was wondering if i should told her or no,before my delievery i told her tht she need to come back to hospital for medication she totaly refuse without knowing she have an cancer,after 2 days i delievered unfortunatelly with my son who has a cardiac prob and died within a week ,tht makes me very weak ,i keep thinking that i cant go throught all of that ,now it has been 2 months ,i still recovery from the lost of my child ,i ve to think for my mum ,i cant face any death agin in the maintime,im unique child ,no brother,no sister ,i ve a big issue with my dad so im totaly alone ,only having my lovely husband so i need your idea ,mum now know thts she have cancer i told her the time i was depressed of losing my child,so i told her tht she need a surgery ,she refuse totaly ,telling me tht it waste of money and time,tht he will came back again and again and im now my fiancial very low after my delievred ,please help me what can i do for my mum ,i cant sleep ,im totally hopless

tammysalterego
Posts: 5
Joined: Apr 2012

Aicha, I am guessing that you are not good with the english as your message is hard to read but what I got is that your mom is refusing any surgery because she thinks it's a waste of time. Unfortunately, you have to respect her decision. I know that you want to keep your mom but it is a very painful and personal experience and she probably knows that she can't bear to go thru it. Just be there for your mom in whatever way she wants you to be. She has the right to chose her path and she just wants you there to love her.

Wendy Segler
Posts: 41
Joined: Sep 2011

Hi, I had Vulvar cancer and lymph nodes removed on both legs. If you have questions or want to just talk please email me at Wendysegler12@gmail.com. Will try to help ant way I can! Prayers going your way. Wendy

ppaseka's picture
ppaseka
Posts: 68
Joined: Oct 2011

Wendy,

What type of removal did they do?

Wendy Segler
Posts: 41
Joined: Sep 2011

Hi, please email me at Wendysegler12@gmail.com Not sure of the exact term for the lymph node, but the opened up both legs and removed all nodes. Nine years later still enlarged, yucky legs(used to be my best asset) Also had a radical vulvectomy. I am in Calif. Had mine done at Loma Linda. What state are you in? How long ago did you have yours done, and how are you doing. Please email me and we can talk more. Sending rainbows your way! Wendy

Wendy Segler
Posts: 41
Joined: Sep 2011

Hi, please email me at Wendysegler12@gmail.com Not sure of the exact term for the lymph node, but the opened up both legs and removed all nodes. Nine years later still enlarged, yucky legs(used to be my best asset) Also had a radical vulvectomy. I am in Calif. Had mine done at Loma Linda. What state are you in? How long ago did you have yours done, and how are you doing. Please email me and we can talk more. Sending rainbows your way! Wendy

Wendy Segler
Posts: 41
Joined: Sep 2011

Please email me at Wendysegler12@gmail.com to share experiences Wendy. Hope you are having a good week end!

Wendy Segler
Posts: 41
Joined: Sep 2011

Hi, I had Vulvar squamous cell carcinoma, and lymph nodes removed from both legs, please email me or respond here. Wendysegler12@gmail.com if I can be of help,I certainly would be glad to. Interested in how you are doing now. Wendy

juliamary
Posts: 11
Joined: Nov 2011

Hi,
My name is Julia and i am from the U.K, I HAD A cancer lump removed from the vagina, had chemo and alot of radiotherapy to my pelvis and groin as it had spread to mthe lymph nodes, just wondered if you had that 5 months on i am still very tender in that whole area and have many days when still very tired, do not know how long to expect these side effects to last. Had a clear scan result in July, but have to have a pet scan soon and am gettting really anxious all over again. Would love to hear from anybody that has had bad side effects.

doneil
Posts: 3
Joined: Jan 2012

That is young for the diagnosis and sorry you have to go through this! I am 43 and have stage 3 vaginal cancer the treatment to date has been 7 bracytherapy, which was done in a hospital admission over 4 days and then this was followed by 5 chemotherapys once a week and 27 radiations, I have done the bracytherapy (barbaric and truamatic far worse than I imagined it to be) and I have had 3 Chemo with 2 more to go the chemo has not been much of a problem so far, but the radiation still has 11 to go and I am badly burned in one groin the skin has opened up, the vagina is swollen and burned but the worst part is the anus is burned and feels like I am pooping glass, and with all the treatments I am pooping more than one should?

I would be intersted to know where you are at and what treatments occurred for you!

Donna

BrokenJ's picture
BrokenJ
Posts: 17
Joined: Jan 2012

Hi doneil,
I too have stage 3 vaginal cancer. Its sooo hard to find any information on this. I start my chemo/radiation treatments next Monday and I'm trying to gauge how long I have before it really hits and how hard its going to hit.

They are going to assess my tumor in 5 weeks to see if I will need bracytherapy at that time. It doesn't sound fun at all.

Sue12
Posts: 4
Joined: Oct 2011

Hi Donna,
I have bartholin gland cancer (a rare type of vulvar cancer). I have already had a vulvectomy and still not completely healed after 3 months. They want me to have brachytherapy soon but i am unsure. What was your experience? What was traumatic about it? I am thinking i may not be able to cope with more complications (i have colostomy bag because my bowel was damaged during the op). Thanks for your time! Sue

Bittersweetly's picture
Bittersweetly
Posts: 14
Joined: Apr 2012

I have (or had, not sure at this point) advanced stage (IVb) vaginal adenocarcinoma, and I had a very positive experience of brachytherapy with Dr. Subir Nag in Santa Clara, California.
I experienced NO side effects from the brachy, it was done with spinal/local sedation, whereas the external beam radiation side effects were hell!
And, less than 2 months since my last brachy, my tumor, which was fairly large and invading my bladder, is gone.
I'm sorry I won't be able to get back online until around May 1 - I hope to reply in more depth then...
Good luck to you!
B

Sue12
Posts: 4
Joined: Oct 2011

Thank you for your message. I too had virtually no side-effects from the brachy in the end - what a relief that was. Unfortunately a new lymph node popped up in my groin so the cancer was obviously still active. They decided to start a full 6 weeks of radiotherapy plus cisplatin (chemo). I have finished the cisplatin now but still have another 3 weeks of radio. As you said, the side-effects are hell! I am really struggling to get out of bed. I am so tired all the time, I hope it will get better. Diarrhoea is terrible too, esp i have a colostomy. They also said there is a risk of lymphoedema which is the worst, itterrifies me! How are you now? I hope the radio effects passed. Best wishes, Sue

MYarn
Posts: 2
Joined: May 2013

Ask about doing hyperbaric chamber for healing wounds from radiation.

A friend is a mess with vaginal radiation burns and hoping this will work.

Have another friend that says this helped to heal her.

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