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Stage IV- my fiancé, 22 yrs old

Dave786
Posts: 8
Joined: Nov 2012

Dear All,

My 22yr old fiancé has stage IV OC and will soon have surgery to remove the cancer in her abdomen area. Due to have in Dec this year (2012) or latest Jan 2013.

She is the love of my life and I want to be with her regardless of what happens.

Is there anyone who can relate to this or advice us on pre- surgery preparations or post surgery....the op is 8-10 hours long

Feel free to comment

Thanks

Dave :)

Alnik
Posts: 56
Joined: Feb 2012

I found out about my cancer (stage3) almost a year ago. I think i have been in a fog ever since, however my boyfriend and best friend have been with me every step of the way. I think for me the most important and helpful things were to always have one of them with me at ALL appoitments because i honestly do not remember a thing the docs said so they would come with,take notes,ask questions. In the beginning they give you so much information it is overwhelming. Just a personnal side note, I was so afraid of all the different things test,exams,blood work,etc. so at those appointments i asked if my boyfriend could be in the room with me and they allowed him to be by my side throughout everything, and even now a year later my BF and boyfriend are still by my side their support is priceless. If you do have questions you are at the right place to ask them,so please do so!!!!!!!!!!

jt25741
Posts: 22
Joined: Apr 2012

Generally the staging comes from Pathology reports post surgery. On what basis did the doctors give a stage IV diagnosis?

Kook
Posts: 9
Joined: Oct 2012

Did they say chat type? 21 year old CAN be a germ cell tumour

Kook
Posts: 9
Joined: Oct 2012

Did they say chat type? 21 year old CAN be a germ cell tumour

Kook
Posts: 9
Joined: Oct 2012

Did they say chat type? 21 year old CAN be a germ cell tumour

Kook
Posts: 9
Joined: Oct 2012

Did they say chat type? 21 year old CAN be a germ cell tumour

MJensen
Posts: 93
Joined: Oct 2012

Dear Dave,
This is heartbreaking news for someone so young and for the two of you with so much happiness to look forward to. I am curious how they already determined she is stage IV?  From my personal experience, I was diagnosed late and based on the CT scan it was expected Stage IV but it wasn't confirmed until I had my first surgery. After my diagnosis the  ONC /GYN went in laproscopically to get a better look.   He removed my ovary, Fallopian tubes and took some biopsies and then closed me up.   I had lymph nodes, peritoneum, tissue and ascities fluid all riddled with cancer.  The Surgeon felt it would be better to start me on chemo before going in for a second look and doing the final debulking surgery.  I actually had 3 rounds of chemo (once very 3 weeks) and then the surgeon went back in laproscopically to do the second surgery.  Going in laproscopically was less evasive so my recovery time was better.  The surgeon told my family it was like night and day.  The chemo had really attacked the cancer which made it much easier for him  to do his job.  He had a lot less to remove.  You may want to ask your Surgeon and Oncologist if this may be an option so your fiancé won't have to go thru such a lengthy surgery.  As far as what you can do before surgery, I would say it is extremely important for her to stay as healthy as possible with her diet and excercise.  A good support system and positive attitude is key as well.  I think it is awesome that you plan to be there and support your fiancé through this.  There is no doubt it will be a roller coaster of emotions while you are going through the diagnosis, surgery and treatment process.  Everyone on this board will be here to support you and your fiancé as you travel on your road to remission.  
I am 59 years old and was diagnosed in Aug 2010 and have been on various chemo treatments ever since.  My family, friends and coworkers are what keep me grounded and help me find the strength to forge ahead and stay strong.  There are several women diagnosed stage IV that have gone
through surgery and one intense round of chemo treatment and have since gone into full remission.  I sincerely hope this is how it will work out for your fiancé so you can get on with your wedding and life together!!!   
Please keep us posted. Everyone here is very supportive. Sending the both of you positive thoughts and energy! Michele

Dave786
Posts: 8
Joined: Nov 2012

Hi Michelle

Thanks for your kind words firstly - much appreciated.

Who said that life is going to be a smooth ride!! haha. It is definitely on pause at the moment. My fiancé was diagnosed in march of this year and since then has had 4 cycles of chemo, 2 with Avastin but unfortunately her second dose of Avastin caused bowel perforation and thus we stopped chemo altogether and surgery was considered a few months ago but she is thin and agile as it is and surgery would have taken a lot out of her and maybe would not have made it.

However now she is better, been looking at both private and pubic sector for treatment. she is being treated in Oxford, UK - and the surgery is due in early Jan. I just want the best for her, I even looked at taking her abroad for treatment.

It has been a rollar coaster ride and there is still a lot to go through - she's 22 and we both had plans for kids and now that dream has been dented as she is emotional enough having to have her ovaries removed for her surgery very soon - only a woman can understand that feeling I think

She is the love of my life and i believe in this life, true love only happens once. I want kids and do know there are several other methods out there but just scared of losing her and my parents later in life and being left alone........choosing the right partner in life is crucial

Decisions Decisions.....

MJensen
Posts: 93
Joined: Oct 2012

Hi Dave,
You are doing all the right things! Explore your options for sure. Avastin is starting to get some recognition in the treatment for ovarian cancer as it slows the production of new blood vessels. I am sorry to hear it caused a bowel perforation. Glad she did not need a bowel resection. How did the first rounds of chemo work for her? Hopefully it attacked her cancer cells and her surgery will go better than expected in Jan. Once she is past the surgery I am sure they will start treatment again and hopefully she can tolerate the chemo without the Avastin. The main goal is to get her through the surgery and treatments that follow. I have no idea if treatment in the US would be any different than in the UK but my guess is her DRs are all up to date with the best course of treatment she should be given. I do know that I have a wonderful Oncologist and I am my own advocate and ask a lot of questions. You and your fiancé should do the same. I trust my oncologist completely and feel he will do everything in his power to give me the best care that he can. The Cancer Center I am out have a team of DRs that discuss all my options and then I make my decisions with my Dr and husband. It is important that the two of you believe in and trust your Dr.
You are lucky to have found the love of your life and she you. Try to take it a day at a time and not think too far into the future. Cancer is an ugly beast and everyone responds differently to treatment. Your true love has a lot to look forward to so I am sure she will fight as hard as she can to beat this. Once she gets through her treatment and can get some quality of life back then you two will figure out the best alternative way to have children. Please take care of yourself as well as your fiancé. It is tough on the patient but also very tough on the caregiver as well.
Please keep us posted on her progress and let her know she too can ask questions, vent, cry, scream or do whatever she needs to get through this. She is entitled to express any and all of her feelings and raw emotions to us. We have all been there and feel for her! My heart goes out to both of you! Sending you all the positive thoughts, energy and healing power that I can, Stay strong! Sincerely, Michele

Dave786
Posts: 8
Joined: Nov 2012

Hi Michelle,

Thanks again for your warm words. My priority at the moment is keeping by her regardless through this difficult time and will assess things later on. The plan is to have the surgery in early Jan and hopefully we will remove the bulk of the cancer, I think reoccurrence is inevitable as I am sure many women here will agree but the aim is to take out as much as we can. As well as this, she has a lump on her neck which there was a recent biopsy done on - I think it is best to assume its cancerous and look to remove it - that will be a separate op though after she has fully recovered from the main one on her abdomen.

Just thinking to the future which is only natural -obviously my parents love her and her family dearly but at the same time they are cautious for me to get myself fully committed to someone who potentially may not have many years to live (assuming the worst) I am worried about say 20 yrs down the line, my parents and wife will be gone and I will be left alone.....that is my main concern. And an underlying truth which I have learnt from going through this with my fiancé is that life is only temporary - so make the most of it, and for me having kids is a big part of that......however I don't want to treat her like 'damaged goods' if that makes sense. I believe A REAL MAN would stick by her now....but at the same time isn't wrong to part ways later on. I mean when I used to go with her and visit her in the cancer hospital - it really is a different universe there, I mean one has to be mentally strong just to visit someone there......have to be strong and Hospitals in general are not alien to me as I am a type I diabetic myself and was diagnosed young, but thankfully I am in perfect health.

Michelle I have been very honest with you.....I have nothing to hide

let me know your thoughts

MJensen
Posts: 93
Joined: Oct 2012

Hi Dave,
I am not sure how old you are but I assume you are young as well. I have kids in their 20's as well. If my son was going through what you are I can only imagine what I would say him. I think I would ask him to listen to his heart!!! I know it is tough to not think about the future. I think you are there for her because you want to be and you committed to her when you asked her to marry you. I don't think you are sticking by her to prove you are a "real man". Not knowing you I am making this assumption because you said she is the love of your life. If you are having second thoughts about your future with her I would say dig deep, listen to your heart and maybe seek some professional guidance. I am sure these are normal feelings/reactions to what you are going through. I know that it was important to me that I knew that my husband and kids were "all in" with me and they are. The first thing out of my husbands mouth was "we will get through this together" and it really helped me to forge ahead bravely.
I know you are looking 20 years out and worried your fiancé and parents may not be with you but the reality is we never know what the future will hold for them or for you so it is very hard to predict your future.
I know when I was diagnosed I asked my DR for my odds of a long term remission for me at stage IV. He said the statistics were 20% for a long term remission at my stage. Obviously someone has to be in that group of 20%. I hope your fiancé will be in this 20%.
I hope you both stand strong against this horrible disease! Please let us know how she is doing and if the chemo she has already been given has been working for her. Positive thoughts and energy always! Michele

Dave786
Posts: 8
Joined: Nov 2012

Hi Michelle

Thanks for your kind words firstly - much appreciated.

Who said that life is going to be a smooth ride!! haha. It is definitely on pause at the moment. My fiancé was diagnosed in march of this year and since then has had 4 cycles of chemo, 2 with Avastin but unfortunately her second dose of Avastin caused bowel perforation and thus we stopped chemo altogether and surgery was considered a few months ago but she is thin and agile as it is and surgery would have taken a lot out of her and maybe would not have made it.

However now she is better, been looking at both private and pubic sector for treatment. she is being treated in Oxford, UK - and the surgery is due in early Jan. I just want the best for her, I even looked at taking her abroad for treatment.

It has been a rollar coaster ride and there is still a lot to go through - she's 22 and we both had plans for kids and now that dream has been dented as she is emotional enough having to have her ovaries removed for her surgery very soon - only a woman can understand that feeling I think

She is the love of my life and i believe in this life, true love only happens once. I want kids and do know there are several other methods out there but just scared of losing her and my parents later in life and being left alone........choosing the right partner in life is crucial

Decisions Decisions.....

Dave786
Posts: 8
Joined: Nov 2012

Hi Michelle

Thanks for your kind words firstly - much appreciated.

Who said that life is going to be a smooth ride!! haha. It is definitely on pause at the moment. My fiancé was diagnosed in march of this year and since then has had 4 cycles of chemo, 2 with Avastin but unfortunately her second dose of Avastin caused bowel perforation and thus we stopped chemo altogether and surgery was considered a few months ago but she is thin and agile as it is and surgery would have taken a lot out of her and maybe would not have made it.

However now she is better, been looking at both private and pubic sector for treatment. she is being treated in Oxford, UK - and the surgery is due in early Jan. I just want the best for her, I even looked at taking her abroad for treatment.

It has been a rollar coaster ride and there is still a lot to go through - she's 22 and we both had plans for kids and now that dream has been dented as she is emotional enough having to have her ovaries removed for her surgery very soon - only a woman can understand that feeling I think

She is the love of my life and i believe in this life, true love only happens once. I want kids and do know there are several other methods out there but just scared of losing her and my parents later in life and being left alone........choosing the right partner in life is crucial

Decisions Decisions.....

mopar
Posts: 1950
Joined: May 2003

So sorry to hear that she must deal with this at such a young age. I hope that you are encouraged by the responses here. I would like to also offer hope, encouragement, and prayers. You are wonderful to be so supportive, and that will be instrumental in your fiance's recovery and outlook.

The best she can do for herself right now is to be hopeful. Staging really can't be done until the surgery. And continue to do the things you both love to do. There will be time to deal with everything else, one day at a time. Tell her not to anticipate anything - there are so many variables.

Sending hugs and prayers to you both. Please keep us informed.

Monika

Dave786
Posts: 8
Joined: Nov 2012

HI Monika

Thanks for your support and kindness

There is a big journey ahead of us and it won't be easy - just have to stay positive and stick by her at the moment. I just want her to have a long and healthy life and would like to be part of it - just scared of losing her in future.....

Dave786
Posts: 8
Joined: Nov 2012

HI Monika

Thanks for your support and kindness

There is a big journey ahead of us and it won't be easy - just have to stay positive and stick by her at the moment. I just want her to have a long and healthy life and would like to be part of it - just scared of losing her in future.....

lovesanimals's picture
lovesanimals
Posts: 1234
Joined: Sep 2011

All of the emotions you and your fiance are feeling are normal and expected. Please know that I am praying that the surgery and chemo kick her cancer's butt and that you and she live a long and happy life together. Please keep us posted on her progress.

Hugs,

Kelly

Dave786
Posts: 8
Joined: Nov 2012

Hi Kelly,

Thank you for all your prayers and kind words - hopefully the surgery will go fine in early jan 2013. A long way to go yet but just have to stay positive and remain supportive.....

Thanks xx

bigdavey
Posts: 1
Joined: Dec 2012

hi dave
my girlfriend is going through the same treatments as yours
it all began 2 years ago when she had stomach aches she went to the docs who did a wee sample and said she had the onset of the menopause she was 49 6 months later she still didn't feel right so went to another doc who did bloods and was confirmed xmas eve 2010 stage 3c ovarian cancer devastated we both thought it was the end of the world we married 2 months later thinking this is the end
jeanette started her chemo in the february she had 3 sessions of carbo/taxol then underwent her debulking op then continued with her chemo her initial ca 125 was 10000 thats right 10000 after her first chemo it went to 13000 when she had finished her session it was down to 11 so we thought hey cracked it obviously she had all the side effects and i mean all neuopathy,bone aches,fatigue,chemo brain,listlessness, vision bluring,you get the picture anyway we bought gifts for the staff and nurses stupid now but we really thought that we had beaten it
6 months later it was back this time the prof thought gemcitabane was the way to go so she had 3 sessions of this then her veins closed up so they put a pod in her stomach for the iv 2 more sessions and she was dying in front of me her pain was to much i rushed her back to mount vernon were they couldn't understand what had gone wrong she managed to crawl out of bed and her pod exploded through the skin poison running down her leg swiftly transfered her to surgery they removed the mess and managed to perforate her bowel in the process 7 weeks of hospital treatment at one point i received a phone call to tell me to get there quick she didn't have long well the doctors and nurses never gave up her temperature was hitting 40.5 she had more wires in her then i'd ever seen she couldn't eat or drink she in fact looked like a concentration camp survior slowly she turned the corner july 2012 she came home frail and weak she put her weight back on and we went on holiday for a week october this year she felt things were not right so we went back to the hospital and sure enough it's back this time in her pelvis and lymph nodes were now on taxol on its own for 18 weeks every week her hair is on its way out again she is fatigued all the time but we'll see it through together
the reason i post this to you is just to say if you love someone you commit and never give in even in the darkest of times i know it's a fight we probably wont win but were together and lifes not forever but love is
take care my friend and let me know how things are

debbie steadham
Posts: 30
Joined: Aug 2012

bigdavey,im not normally one to say anything about anyones post and i know we can say anything or vent or whatever,I read this post you wrote and was thinking how blessed we are to have our husbands ore boyfriends by our side.Then i came to the end of your post and i felt so bad for your wife when you closed with its a fight we probably wont win.If my husband feels that way he never voices it to me and i am so grateful he doesnt,I do not want to be around negative people.I had the thought while reading this ,What if she sees this post, probably a fight yall wont win.Please keep a positive outlook for youself as well as for her.Again im not trying to be hateful ,God is still working miracles.Hope all is well with your wife.Debbie

debbie steadham
Posts: 30
Joined: Aug 2012

bigdavey,im not normally one to say anything about anyones post and i know we can say anything or vent or whatever,I read this post you wrote and was thinking how blessed we are to have our husbands ore boyfriends by our side.Then i came to the end of your post and i felt so bad for your wife when you closed with its a fight we probably wont win.If my husband feels that way he never voices it to me and i am so grateful he doesnt,I do not want to be around negative people.I had the thought while reading this ,What if she sees this post, probably a fight yall wont win.Please keep a positive outlook for youself as well as for her.Again im not trying to be hateful ,God is still working miracles.Hope all is well with your wife.Debbie

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