Vulvar Cancer return in less than 3 months

Jenny1629 said:

Vulvar Cancer return in less than 3 months

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!

 

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

Hugs,

Fighting

Jenny1629 said:

Vulvar Cancer return in less than 3 months

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.

 

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 said:

Prayers for a clean scan for

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

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

Jenny1629 said:

Vulvar Cancer return in less than 3 months

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!

& 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!

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 said:

Vulvar Cancer return in less than 3 months

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.

 

Jenny,

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