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Vulvar Cancer return in less than 3 months

Jenny1629
Posts: 19
Joined: Nov 2013

I thought that I had an infection but my Onc. Gyn. believes that the cancer returned!  He did a biopsy and if it has returned, he explained that since I have already had radiation and chemo treatments, that my only other alternative is major surgery to remove the tumor but that is not a guarantee that it will cure me and that can be done only if the cancer hasn't metastised.  I'm FLOORED because I had a PET Scan 2 months ago and is was clear except for a nodule in my lung which after a CAT scan is clear!  I'm terrified and what if the cancer metastised is that a death sentence?

I'm 53 years old and other than this current issue, I feel great!  Has anyone else experienced this?

ccfighter
Posts: 399
Joined: Jan 2012

I'm sorry that you are dealing with this worry.  take a deep breath, and try to stay positive until you get your biopsy results.  Hopefully it is an infection.

if it does turn out to be a recurrence then surgery is a good option.  Getting a second and third opinion on treatment options is also a good idea.

be your own advocate.  And know that even if the cancer has metastasized it is not an automatic death sentence.  There are people who manage to beat it, so go into the ring with your gloves on and fight to win.  

Where is the recurrence?

i have cervical cancer so I can't be real specific on treatment details available to you But someone will be along soon with some more specific information.  

I hope everything turns out well for you.  Keep us posted.  Hugs.

Jenny1629
Posts: 19
Joined: Nov 2013

Thank you for your words of encouragement!  I have Vulvar Cancer and was initally diagnosed in 10/2013.  Everything seemed to be going great with no complications and now this cancer has come back in such a short time with a vengance!

I have contacted MD Anderson so hopefully they will have some additional options for me.

I'm walking around in shock and I hope that I can bounce back ready to fight!

katenraj's picture
katenraj
Posts: 13
Joined: Aug 2012

Hi Jenny

I am praying that all will be ok for you. MD Anderson sounds like a good option. So sorry it has come back so fast. But they can do great things these days. Just one step at a time. I am 2 years out post Stage 11 Vulvar ca. Still not able to have normal relations with my husband as I suffered a lot of burns from radiation. But praying it will be get better. Just take it one step at a time and you will get through this horrible ordeal. This is no easy road. Hugs to you. Kathleen

Jenny1629
Posts: 19
Joined: Nov 2013

Thank you for your prayers!  I guess that because I have so few choices left, I feel that this may be it!

I'm healthy but from the why my Gyn Onc talked, his prognosis just didn't seem encouraging.  He didn't come right out and say that this is grim, but he did explain that this won't be easy and that even with the surgery this may not cure the cancer.

My bigger fear is that what if it did met can I still be treated? 

Anyway, prayers are greatly appreciated because God is the great physician!

ioanna
Posts: 35
Joined: Apr 2014

Hello Jenny, I really do understand how you feel. I too had a recurrence very shortly after treatment was completed. But giving up is not an option.. Yes I am scared, and I know maybe the chemotherapy won't work. And I know I am fighting against statistics.

From ny point of view, everything can be treated even if this involves trials. Or at least, everything is worth trying! I wish you the very best :)

Jenny1629
Posts: 19
Joined: Nov 2013

Thank you so much for sharing your experience.  I am SHOCKED that it returned so quicky!  Yesterday I went to MD Anderson and I was told the same thing that my Onc/Gyn told me last week.  The cancer returned.  I can't have anymore radiation because I have had 32 treatments which ended in January of this year.  I was told that the only other option that I have is to have the surgery which will require me to wear a colostomy bag and that can only be done if the cancer hasn't met.  I'm not sure what that means but I have no intention of giving up and if there are trials, I'll do it!

I'm healthy and have a good support group!  I have spent the last 3 days crying, feeling low, asking WHY but there HAS to be a light at the end of this tunnel!

My PET/CAT scan is scheduled for next week and I'm feeling anxious about that and I have so many prayers going out for me but I pray for courage!

I look forward to your updates and I take those words with me.  It really helps!

Thanks again everyone for your encouraging words!

Keeping fingers crossed!

 

Judemo
Posts: 99
Joined: Jun 2014

Hang in there please and read all posts over in Uterine CA discussion board as well!  You can beat this! You have all of our support/Gods support and keep reaching out to us! You are NOT alone!! keep us informed.  I'm new to all of this and am just starting out.  I think you should keep talking to us through this board!  I believe in miracles!

FightingSpirit
Posts: 34
Joined: Feb 2013

Hope your scans come back with minimal spread and you can get a treatment plan in place this week.

Hugs,

Fighting

Judemo
Posts: 99
Joined: Jun 2014

Thinking of you. Do NOT give up hope. How are you today?

Jenny1629
Posts: 19
Joined: Nov 2013

Thanks SO much for your support!  I'm still in shock over this!

Everything is moving so fast I have a PET Scan scheduled for this Friday and then I was told that if the cancer hasn't spread I will have surgery the 1st week of August.

I'm mad, sad, confused and scared!  This is going to be a major surgery and I will have to use a colostomy bag the rest of my life.  I am trying to be upbeat for my family but when I'm alone all I do is cry. 

I know that people are praying for me, and my family is so supportive but I guess that I need to finish up with my pity party so that I can fight this battle.

 

babe12
Posts: 64
Joined: Jul 2012

Jenny, I'm so sorry to hear of your recurrence and now a surgery. It sucks and you are allowed a pity party. Then get ready for your fight. I was stage 4A vaginal cancer, did the chemo & radiation, then a posterior pelvic exenteration, so now I have a permanent colostomy. I have to admit, I was totally freaked out when I was told I had to have one! This was right after I was dx & I was being hit with so much stuff at one time. It took me 3 days to agree to have it done. I realized I wanted to be around for my family so I went for it. It was done before I started my treatment & I held on to the idea that I might be able to have a reversal one day. Well that didn't happen & I'm ok with it. I can do anything I did before, except I don't care to wear a 2 pc swimsuit!! It's just a hurdle to jump. You can do it. 

Let your family help you through this. It sounds like you have such a wonderful support system, that makes such a difference!! Hang in there and please keep us posted on how you're doing. Or if you just need to vent. You can do this!!!!

Babe

Judemo
Posts: 99
Joined: Jun 2014

Jenny, my heart is breaking for you. I'm so sorry to hear. You lean on us any time! Bless your heart! Please hang in there. I wish I could say something to make you feel better.  Just know that we are here for you.

 

jude

ccfighter
Posts: 399
Joined: Jan 2012

Prayers for a clean scan for you.  One step at a time.  You can do this.  Hugs.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 576
Joined: Mar 2013

Jenny - I hope you are ok.  I know you were overwhelmed and pray for you.

Jenny1629
Posts: 19
Joined: Nov 2013

Thanks to everyone sending me positive words!  I have been very depressed the last several weeks and my surgery to remove the cancer as well as getting the colostomy bag is scheduled for tomorrow.

I am terrified and scared but this is my only option.  However, I'm not giving up and will get through this with God on my side!

We all have a story to tell and I appreciate everyone sharing theirs with me.

I'll keep you posted as to how the surgery goes.

Keeping fingers crossed!

Judemo
Posts: 99
Joined: Jun 2014

& prayers tomorrow. I'm sorry for all your going through. Just know I care and I know many others here care for you too.  Please keep us updated on your recovery when your up to it.  We care!

ccfighter
Posts: 399
Joined: Jan 2012

Prayers and positive energy!

 

kick butt and get better soon.  Hugs.

funbeadgirl
Posts: 164
Joined: Jan 2009

Dear jenny,

I have read your posts and certainly could sense your fear, frustration and shock and I also understand those feelings in regard to vulvar cancer. First off let me say that I hope you are doing okay after your surgery, take it one day at a time and try not to project the worst case scenario. I also hope you have a support system of friends and family that can assist you with things and please accept help when it is offered.

i was diagnosed with a rare vulvar cancer in 2008, an adenocarcinoma . I had surgery 17 days after my biopsy and it was found in one lymph node, so after recovery I had 33 radiation treatments. All seemed okay until 6 months later they found thyroid cancer during PET scan, so I had another surgery and nuclear medicine ablation...the following year my PET scan showed a suspicious lesion in my right femur. They watched it for about 8 months and eventually had to biopsy it with an open surgery... It was that darn vulvar cancer and it had metastasized to my bone, so 28 more radiation treatments followed by 6 chemo cycles. It was very hard but I got through it.

i have not had a clear scan yet...metastes every single time. i have had three surgeries on same leg for issues with bone, two cryoablation  in pubic bone for metastes and now I am going through chemo again. I've been to mayo clinic for second opinion and another teaching hospital also...I hear the same thing...there is no known protocol to treat your cancer. I have even had genetic testing done, hoping I could get into a clinical trial but I did not qualify because of the thyroid cancer.

i have experienced the highs of being hopeful that whatever I was going through would be the 'cure' and I've had the lows that come with having an orphan disease and feeling my days are numbered. I'm here to let you know that really no one has any guarantees BUT we can live with the uncertainty of having cancer in our lives. Just because it seems like there is no 'cure', doesn't mean that we can't survive or even co exsist with the disease. There are many people who live with incurable diseases, like diabetes and it can be managed. That is what I am trying to do now...co exsist with cancer...it doesn't control me, it has it's place and I go on with my life. In fact my doc said I could live for years with things the way they are now. I know the metastes will progress and start causing problems but it hasn't happened yet.

i am Stage 4 now and I have many bone metastes, one in my spine at C2, that is the scary one but my docs are doing their best and I'm content with that. I'm not dying today, probably not tomorrow and I don't see it on the schedule in near future, so I get my chemo, rest, take care of myself and then enjoy my life, my grandkids, my friends, etc.

Cancer has changed my life dramatically but it has also allowed me to see things in a different way, and I've been on the receiving end of such love and care from my support system of friends and family. I've learned to be more grateful for little things, for everything really. I believe it is about perspective, yes, I am enduring a terrible illness but I'm not dodging bullets or having to beg for food. I have it pretty good, in fact most people looking at me would not even realize  how truly sick I am. I keep going as much as I can when I have the energy.

So...if I could give you one word of encouragement, I guess it would be to not go past where your at right now. In other words don't worry about something that might not happen. Be a proactive patient and ask many questions and do research and ask more questions. Don't be afraid to say that you are having a bad day or that you need to talk with someone about how you feel. Cancer centers and oncologists have great resources for patients, but you must ask for them, I find they do not readily offer that type of help.

coming here is good because there will be someone who can identify with your circumstances. I always kept a journal and wrote in it everyday. And since my leg surgeries I have a Caring Bridge blog for my friends to catch up with all that is going on, it has been very helpful to me in so many ways.

i am a spiritual person and I believe in the power of prayer, I've seen the effects of it in my own situation, so I will say a prayer for you. Please know that you are being thought of by the ladies on this site, we all care for what each person is going through and we try to encourage with our own stories, so you can come to believe that you will get through this and be okay.

you can do this sister...one day at a time, one hour at a time if you have to but you can be that strong woman so when the next lady comes through here with tears in her eyes and fear in her heart, you will give her comfort from your own experience. you will be on my mind and I hope to come here soon to see you post that you are managing the best you can. I tell everyone to be strong and stand firm in the face of cancer, you can do it!

best wishes, sue

Jenny1629
Posts: 19
Joined: Nov 2013

Sue,

Thank you for sharing your story.  I am still recovering from the surgery the Dr. removed pretty much everything including my ovaries and appendix.  He said that they were fried from the radiation and I now wear a colostomy bag.  I'm still surprised that the cancer grew as fast as it did and damaged so much. I didn't have these problems when I was first diagnosed!

Of course there is not guarantee that it won't return but like you said, I cannot dwell on the what if but more on the positive.

I went to my 1st follow-up and was told that I'm healing nicely.  Hopefully that will continue.

I feel that I have been mutilated but my husband said that he still finds me attractive no matter what!  The important thing is that I'm still here which I need to focus on.

This board has really uplifted my spirits and I cannot thank everyone enough for their encouragement and stories!

Sue you are an inspiration and I pray for your healing and everyone who experiences this awful disease.  You seem to have such a positive attitude and I pray that I too will be in the place you are soon.

 

ccfighter
Posts: 399
Joined: Jan 2012

Jenny,

 

I am glad that your surgery went smoothly and you are recovering well.  Lots of warm healing energy sent your way.  Hugs.

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