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Vaginal cancer stage one squamoys cell carcinoma any survivors?

Brigitte33
Posts: 15
Joined: Nov 2015

Please help me by letting me know you survived longer than 3-6 years

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2841
Joined: Mar 2013

Brigette, please try to take a breath.  I am sorry you have found us, and I don't know if you are writitng for yourself or for someone you care about.  "Statistics" are just that - numbers crunched.  A dear, sweet woman who was on these boards alwasy said, "You are a statistic of one".  Everyone is different on health matters and how they handle treatment.  I am not sure if there will be anyone reply to this, vaginal cancer is rare, but they are out there.  

We may not be able to answer about vaginal cancer, but please ask about treatment or tell us how you are doing.  You are not alone. 

Brigitte33
Posts: 15
Joined: Nov 2015

Thank you for responding. I am asking for myself. I have been diagnosed with vaginal cancer. Treatment they recommended has severe side effects (cisplatin and radiation external and internal) i am wondering are there any newer sophisticated treatment protocols? I am alone and i feel scared and frighten of all the side effects and risk factors. I guess even a year is better than dying immediately...it would be good to know how tired people get..how the treatment feels like....the best case scenario and the worst. How come you are sorry that i have found you? 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2841
Joined: Mar 2013

Yes, it IS scary!!!  

What I meant when I wrote, "I am sorry that you have HAD to find us", is I wish you didn't find yourself in a place, being diagnosed with cancer, that you needed to seek out advice.  I wish they would just cure it and no one had to find themselves dealing with this diagnosis. but there are people out here to chat with because of this wonderfull world-wide-web.  I wouldn't wish cancer on my worst enemy. 

From what I have seen, read, and heard from everyone, the treatments you mention are the current protocol.  You can inquire if there are any new clinical trials going on, but there is an acceptance process and I don't think they start with people who haven't already undergone the traditional round of chemo/radiation.  You can ask but there usually is a waiting process to get in.  Getting new drugs (treatment) accepted takes years, and I have seen where they are even trying to tweak the current treatments to get the best results because of toxicity, etc... 

There are lots of women who have done the chemo/radiation (internal/external) so you aren't alone.  

I remember being terrified like you.  It still scares many of us daily.  

What are they suggestion is the first part of your treatment?  Chemo?  Radiation?  

Brigitte33
Posts: 15
Joined: Nov 2015

They are suggesting chemo at 9am once a week and radiation every day just for 15 min for 8 weeks. So chemo will be done before radiation ... they just talk about side effects and risk factors and they say its a rare cancer so there is noone in Australia that i can talk to. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2841
Joined: Mar 2013

Brigitte33, from everything I have read from the ladies on the gyn cancer boards, the side effects do vary greatly.  I would suggest visiting the Uterine or Ovarian board as well and read some of the threads there.  

Since you are starting with chemo, and I would recommend taking this a step at a time, let's start there.

The typical chemo is carboplatin and taxol.  I don't know a woman who hasn't lost there hair with this combo, but I guess there could be someone out there.  A lot of us had to combat constipation from chemo, but there is one lady who is reporting that she has the opposite.  I can say that Miralax is probably not going to go out of business!  heck, we all should have bought STOCK!  It also causes neuropathy for some in their fingers or feet and can bring on joint pain after treatment.  

Do you know what kind of chemo you are getting?  Are you getting a port or not?  How many rounds of chemo?  

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2841
Joined: Mar 2013

Brigitte, at least with the world wide web there is more information available at our fingertips.

http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-types/vaginal-cancer/index.html

I am not sure how familiar you are with US institutions, but MD Anderson in the U.S. is one of the cancer leaders.

The National Cancer Institute has this:

http://www.cancer.gov/types/vaginal/patient/vaginal-treatment-pdq

 

Brigitte33
Posts: 15
Joined: Nov 2015

Thank you for your message and fir sharing those resources. I have been reading about dr Rath approach but i dont feel confident to treat myself with just natural therapies. Although i wish i had that courage. Chemo and radiation seem so barbaric...i have a feeling they will be obsolete in a decade or two...so many side effects and the fact they both cause secondary cancers is just a bit sad. So life expectancy after chemo is decreased to 60. I feel a bit sad about it all.

sunflash's picture
sunflash
Posts: 197
Joined: Aug 2011

Hi Brigitte, 

I very rarely frequent this message board but I'm glad I did today! I'm an 8 year vaginal cancer survivor. I was diagnosed in 2007, and have had no problems at all (recurrences, side effects, etc. ) since my treatment, although I did come down with a completely unrelated cancer in 2011. I have had successful treatment with that one, also, and am completely cancer free today. 

For the vaginal cancer I was treated with cisplatin chemo and daily radiation followed by brachytherapy. The side effects were minimal and I have no long term side effects at all. Cisplatin is a chemo which is given to enhance the radiation and you won't lose your hair with this treatment. 

When I was treated for my UPSC in 2011, I was given carboplatin and taxol where I did lose my hair.

I just wanted to let you know that there are plenty of long term survivors with vaginal cancer, and you can definitely get through this!

Sending hugs! 

2changes's picture
2changes
Posts: 24
Joined: Sep 2014

Hi I'm so happy to hear about a survivor I was diagnosed last summer still fighting Ive been getting so discouraged reading hour post has given me new hope thank you sunflash

sunflash's picture
sunflash
Posts: 197
Joined: Aug 2011

You're very welcome, 2changes!

I know how scary this is, and the lack of information on vaginal cancer doesn't help any. My doctor told me that vaginal cancer is the same as cervical cancer, but just in a different location. The treatment is the same. 

There is plenty reason to hope, and make sure you continue going to your follow up appointments. I still see my dr every 6 months, and if it hadn't been for that reason the uterine cancer would never have been found..........there were no symptoms at all. 

Best wishes for a speedy return to health for you!!

Hugs!

 

Brigitte33
Posts: 15
Joined: Nov 2015

Hi Sunflash 

Thank you for responding. Ill print out your message and keep it with me to remind me that is possible to survive this!

Hugs

2changes's picture
2changes
Posts: 24
Joined: Sep 2014

Thank you

sunflash's picture
sunflash
Posts: 197
Joined: Aug 2011

Hi 2changes, 

I'm just wondering how you're doing on your treatment? 

I hope all is ok!

Please let us know!

Hugs!!!

Brigitte33
Posts: 15
Joined: Nov 2015

Dear Sunflash

Thank you for your reply. I will be treated with cisplatin once a week for five weeks and radiation every day for five weeks plus internal radiation. They are saying i wont loose my hair but all he other possible side effects are just so scary. My cancer hasnt spread MRI and PET scan are all clear  showing just local vaginal cancer. They say chemo is just given to enhance the effect of radiation. However chemo increases the chance of secondary cancers...i guess i dont really have a choice but i just keep wondering how come there is no better approach than chemo. How come gene therapy is not being used for aginal cancer? Chemo & radiation seem so barbaric and obsolete ...Have been reading about dr Rath approach but my oncologist doesnt take it serious. I feel anxious what to expect during chemo & radiation? How does it feel? Were you able to go to toilet normally? Sleep?

Thank you so very much for responding and sharing with me your experience.

Brigitte33
Posts: 15
Joined: Nov 2015

Its great that you've survived without major side effects! 

Thank you for responding and sharing your experience

mmcia
Posts: 11
Joined: Feb 2013

Three years ago surgeon removed what was thought to be a cyst in peices, which means little bits of cancer were left floating in the area, plus I had lymph node involvement. I had two rounds of fluorouracil via PIC line and two rounds of mitomycin. I went neutropenic and had to be hospitalized for four days. I also has 31 sessions of radiation, with 3rd degree burns after session 25. its a good thing that I am not an emotional person, it was easier to go through this with a certain degree of detachment. Three years later i still get muceous in my lungs from the chemo and have diarrhea from the damage from the radiation. The tissue in the area is so thin that I bleed very easily. But i have gotten used to the new normal. I got myself a dog and we walk 2 to 3 miles a day in the rivervalley. I have good quality of life and no sign of recurring cancer. Hope this helps. Your state of mind will make a great difference in how you experience this, try to find peace in whatever form it comes to you.

sunflash's picture
sunflash
Posts: 197
Joined: Aug 2011

Hi Brigitte, 

I know that chemo and radiation are scary and seem harsh, but you need to be careful about nonscientifically proven cancer "cures."

I had never heard of Dr. Rath, and a quick search brought up this:

http://www.quackwatch.org/11Ind/rath.html

Just copy and paste this into your browser and you can read what a group of doctors think about Dr. Rath's methods. 

All I know is that chemo and radiation do work.......I'm an example of it working twice on me. 

Make sure you have an expert and highly qualified radiation oncologist who knows how to target radiation on your tumor to avoid damaging healthy tissue. I've been told that if I ever go to another doctor I would have to inform him/her that I've been treated for cancer since I have no lasting side effects at all. 

You will experience temporary side effects from the external radiation (blistering of skin, diarrhea,)  but those side effects generally go away in time. 

And yes, I went to the bathroom with no problem other than wiping after a bm, but that didn't last very long. I used baby wipes instead of toilet paper and that helped sooooo much! 

Sleeping was not a problem at all. My appetite did change after chemo (lost my appetite for most foods because most food had a sickingly sweet taste) but it came back within a few days. I ate soup and cheese toast which I craved for some reason. 

BTW, my pet scan showed localized cancer also with no spread. That's great news that yours hasn't spread either!

Good luck with your treatment..........you can do this!! 

Sending big hugs and prayers from me to you!!

Brigitte33
Posts: 15
Joined: Nov 2015

Thank you so much for your caring and detailed message!

As you i had no symptoms. My PAP showed 3A group which required a follow uo after 3 months. Ultrasound showed all is good. Gynecologist requested i come back for check up after 3months. 3 months after again ultradound was ok PAP smear showed some atypical cells. Then my gynecologist requested exlorative byopsy.

 

Even during biopsy everything was fine until the very end... As she was finishing she was pulling the area near fornix (back wall of vigana) and then she noticed a califlour like mass 1,5cm....then she took some tissue from there...It turned out to be squamouc cell carcinoma. They did MRI PEt of abdomen and pelvis and all was clear no trace of cancer anywhere. They alsi did colonoscopy and that was all clear...so really it was just local to vigana and squamous cell respond very well to radiation but they said that i am strong so they recommend chemo to top up the radiation. I am not happy about it but had no time to research the altrnative approach .

 

 

Nobody in my family had cancer. Around the same time my mum was diagnosed with vascular dementia and for me that was heartbreaking. I love my mum without hesitation. Sorry for bubbling on. The point is : Your experience, your words give me so much hope and strenght! I had a first Monday of chemo and radiation today. So far so good. Radiation lasted only 4min. it was a breeze...however anticipating the pain is whats exhausting ...they all state that that the effects are cumulative and potentially life threathening if I develop a fever. Ill just focus on your experience as reading your posts instantly uplifts me and puts me in a really light and positive/easy frame of mind. Your posts and experience of cancer lights me up. Thank you so much Sunflash.

Hugs!!! With warmth. Sorry for the typos..writing on my mobile...

 ps. There are new treatments with cancer specific viruses but they are not available here in Australia. That approach really appeals to me as they create viruses specifically to kill your type of cancer cells! Wouldnt that be AWESOME?!!

 

sunflash's picture
sunflash
Posts: 197
Joined: Aug 2011

Hi Brigette,

Hi Brigitte,

I'm with you on the "nobody in my family had cancer." Guess we're the lucky ones, eh? Lol!

Don't worry about the cumulative side effects.......this treatment is saving your life! 

I'm glad you're getting the chemo because that really does give a boost to the radiation treatment. Might as well go for the cure!

And I'm also happy that you've had your first chemo treatment. If you're like me, it's not as bad as anticipated. I think my imagination went into overdrive before my first treatment. After that it was fairly routine. 

You're right about the new research being done targeting cancer cells with molecular therapy, but unfortunately cancer doesn't wait for research to be completed........doctors have to use what they have available right now.

My doctor told me that there's really a lot known about vaginal cancer (cell type) and they know exactly what to do for it.

 

Hang in there, my friend! This will be over before you know it!

    

Brigitte33
Posts: 15
Joined: Nov 2015

Dear Sunflash 

i am with you on chemo not being as bad as anticipated. Treatment was fine but nosia and vomitting kept me awake for two nights after.The next morning i went to hospital because i had a fever 39,8. They did all the blood tests and concluded it was a virus so my body has to take care of it. I continued with radiotherapy and feel much better today. Remembering your words "you can do this" helped heaps. (As well as antinosia tablets and painkillers). I can not but wondering how come the viral theraphy hasn't been used to treat squamous cells carcinoma? That concept of targeted therapies destroying the cancer cells only ..just makes sense to me. This concept to cure something by destroying the healthy cells and causing mutations in healthy cells just doesnt resonate with me. Your experience is uplifting and helping me go through all of this!!!

katenraj's picture
katenraj
Posts: 18
Joined: Aug 2012

Hi Brigitte

 

I had Vulvar/vaginal cancer almost 4 years ago(Stage 11 Squamous cell carcinoma) and underwent chemo and radiation. Brutal but now I am cancer free. I wont tell you it is all a bed of roses...the ratiation left scarred burned skin down there and I have ulcerations but getting better each and every month. AND so happy to be here with my husband, boys and puppies. We feel the survival rate is very good for me at the 5 year mark and I am taking one day at a time. Do not despair. I know this is very easy to do. Email me at katenraj@cox.net if I can be of any help. Hang in there and this is your walk, and you will handle it your way, and everyone is different.

God Bless

Kathleen in Phoenix

sunflash's picture
sunflash
Posts: 197
Joined: Aug 2011

Hi Brigitte and 2changes, 

Merry Christmas to both of you, and hoping you had a wonderful time with your families.

Hoping your treatment is going well and side effects are minimal!

Please let us know how things are going with you.

Hugs to both!!

 

 

Brigitte33
Posts: 15
Joined: Nov 2015

Had my last brachi yesterday. It was so painful but i am recovering slowly...feel sooo tired. It is still painful downthere...hope it gets better soon.I am able to walk & lay down but sitting is a bit uncomfortable. Thank you both for your support. There is noone in Australia who had this same type of cancer so your support Sunflash meant a lot to me. Thank you from the bottom of my heart.

Hugs & xxx

Brigitte33
Posts: 15
Joined: Nov 2015

Today i went for my six week checkup. They found a limp which wasnt there after radiotherapy and chemo. It appeared sometime after brachitheapy ...They will ivestigate ..is it a cancer scar, a ner cancer an ulcer...

They 've given me a large dose of radiation so it is no longer an option...So, it just my bad luck. Thank you everyone gor your kindness and support. 

Tatjana

babe12's picture
babe12
Posts: 103
Joined: Jul 2012

I am a stage 4a vaginal cancer survivor for 4 years now. I just had my yearly pet scan & all clear!!

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