29 years old with stage 3c of ovarian cancer
I need some place to talk. This has been a rough year. I have stage 3c ovarian cancer and I am 29 years old. Last July I was diagnosis and ended up having a full hysterectomy when my debulking surgery took place. I am on my 4th cycle of chemo Cysplatin via IP and Taxol via IV. I have 2 more cycles left. Some reason the process is getting harder to mentally take. I am getting scared of the cancer coming back also the fact that I can never have children now is finally hitting me. My Drs are all very optimistic about my treatment and feel I have been handling the process well. I have talked to them about how I feel but I figured I would come here to hear some advice on how to keep my chin up and fight the good fight, especially from some of the younger surviors. My local support group has been a help but the youngest person I have met is 49 years old.
Please tell me your advice or story to help out...
Thanks in advance
Janna
Comments
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Young
Yes, Janna, you ARE young. This is a great place to talk as you will see we are all different and we each have a story and each will have advice. AND we support each other through listening to each other, giving each other advice and praying for each other.
My story is on my profile and I do need to update it. I am almost 53 years old and you are the same age as my 3rd child (we have 4). I can only imagine...............
I am a firm believer in my Lord Jesus Christ and that He is in charge of my life no matter what. I just have to put my trust in Him and give thanks in everything. I am the type of person that sees the glass half full. The Bible says a "merry heart doeth good like a medicine". I choose to be merry and my hope is in Him.
Also, I have a wonderful prayer group in my church and home town. Our church has a Ladies Mini Retreat on January 30 & 31. I have been asked to give a workshop for one hour on the 31st. I am not a speaker, but I know that the Lord would have me share about my past year filled with challenges, heartbreak (we lost twin grandbabies in May), and hope. "It whispers........so listen. Regardless of circumstances you can have real joy."
I have no advice on treatments. I did not get to finish mine as my counts did not recuperate. I am now on a maintenance cycle with Hexalen (also taking it at an extended level - every other month instead of 14 days on 14 off). I am in remission at this time and I am so thankful. I pray that I never have a reoccurance. My onc/gyn is not so positive as she knows the statistics and she said my cancer is bad. (Does anyone have a good cancer??)
Janna, I pray you find others closer to your age that you can bond and share with. But I also pray that there are not too many that young!
I love you,
Libby0 -
Hugs ♥ Prayers
Dear Janna, I am so sorry to hear how young you are and how much has been put on your plate. In MN we have a young ovarian cancer support group and I am sure they would love to contact you, Check out www.mnovarian.org. Also on the boards here they have a young survivors group that is made up of people with different types of cancer. Maybe between this board and ys board you could find the support you need. Also don't be afraid of asking people in your local support group if they know of another young survivor you could connect with.
Now about feeling down mentally ~ it is pretty normal to get down mentally as the treatments build up in our bodies. Between the surgery and then chemo our body goes through a lot, mentally and physically. To be on your 4th IP is awesome, a lot of people don't make it through but a couple and stop. Shows how much determination and strength you have. :-)
Please come here often and share, you'll find this to be a great wealth of information, full of women with much compassion and love. God's peace be with you. Prayers N Hugs Bonnie0 -
Welcome Janna
I'm sorry you are so young and are dealing with this disease,it's not a fair disease either. I'm currently facing some very tough thoughts and decisons that I need to make and I just turned 50..I can only imagine. As Bonnie mentioned there are groups out there for younger girls. Go to Medhelp.org (or .net or.com) and post on the Ovarian cancer links I believe there are some girls your age on there for you as well. In the meantime don't hestitate to come on and vent or ask any questions you might have that is why we are here. Maybe you should ask for a referral to a physch eval..or maybe some ativan to keep you a bit calmer. We all feel that same fear as you..wondering if this last chemo will take care of all your problems and you never have to see that word again. This being my 4th recurrence I have accepted that I will be fighting this monster for the rest of my life and I would rather do that and live then have no more choices. Take care and welcome~~~Joanne0 -
WELCOME, JANNA
Sorry we must meet this way, but as you can see, it's a great place to come for support, hugs and meeting new friends. You've gotten so much wonderful advice already. I can only echo the words of all the other ladies.
You are young, but that gives you an advantage - you are stronger than most people, and I believe that helps you to fight this disease. Your doctors sound optimistic, and I would hang on to that. They can be 'gloom and doom' sometimes, so any positive feedback from your health care professionals is a bonus. One of these days I will post my profile on this website. But in a nutshell, I've been through this twice - surgery, treatment, etc. I can definitely relate to the emotional highs and lows. But the bottom line, my faith in the Lord carries me through the bad times AND the good. I spent many, many sleepless nights speaking to God and releasing all my fears and anxieties. He gives us peace that 'passes all understanding'.
I could say more, but I don't want to ramble. Check out support groups in your area. If you're not currently working, take up a hobby (if you don't have one already). Something simple, that maybe you can take with you while you're waiting for appointments, etc. Even if it's just reading. Focus on the positive. Don't give the negative any more attention than it needs. Deal with what you need to, but don't allow it to steal precious time and life. And keep coming here. You will find lots of (((HUGS))) to get you through the rough times. We all care, and we've all been there.
Luv & Hugs & Prayers,
Monika0 -
hi janna
I am sorry to read about some else so young dealing with the diagnosis of having ovarian cancer. My sister was 24 when she was diagnosed with stage 2c and I am 32 was just diagnosed with stage 1a. Neither one of us have had to go through treatment but both had hysterectomies. I am still recovering from mine which was just last week on monday the 5th. I can say it is difficult pill to swallow when the dr says you have cancer but I knew that regardless of how bad it was I had to fight. I am greatful that I had caught mine so early but not everyone is as lucky as I am. I don't know how much help I could be in regards to everything but if you want to chat about it you can either email me on here or email at aam9976@yahoo.com... my yahoo im is aam9976 and I am willing to chat on there as well.0 -
Great support here
Lots of support and experience to share on this discussion site. I am sorry that you had to come here and the other ladies have said all I have to offer. Being Type A, I am taking a 10 mg. dose of Paxil (anti-depressant and anti anxiety) which helps me sleep at night and helps with the panic feelings. I have been in treatment since Mar. 2 and am Stage IV. I have to trust in my faith to keep me going and I do keep a journal that helps. (((Hugs))) Saundra0 -
janna
Hi Janna,
I am Shelena I had stage IIIc ovarian cancer at age 32. Not as young as you but close. I know how mentally exhausted you are. Hang in there Baby, trust me you are young and strong and you will make it. I have been free from it for 2 years now. The never having children thing is not true any child you raise is your child. I had a hysterectomy and my lymph nodes take out and that can be hard with the medipause thing but after feeling like I was going crazy for a while they got the estrogene right i feel great. If you ever need someone to talk to I am here for you and lots of others, you came to the right place.I did not have cemo so I do not know what you are going through there but I know all to well about being worried that it will come back. I think we all have that feeling everyday. All you can do is live for today and live it to the fullest. I truly believe that!! Shelena0 -
Janna
Welcome, so sorry to meet this way.Yes, you are very young to be stricken with this monster.You will definitely find this a place to share your ups and downs, ask questions and help others. These are amazing woman here full of encouragement, enthusiam, compassion and support.
Hugs and Prayers
Terry0 -
Hi Janna.....Glad you found
Hi Janna.....Glad you found this place....isn't it great? Sorry you are dealing with this, it really sucks. But, I'm glad you're going to support groups. You know, it doesn't matter how old we are, especially when dealing with something as completely overwhelming as this. No one understands better, than another cancer survivor or someone in treatment. I got a lot of support from 2 co-workers who had recently been through breast cancer treatment. One girl close to your age, and another in her 50's. I am 44, so was right in the middle, but we all felt similar feelings. I had chosen not to have children, but now, at times, I regret that. But I cannot change what was. What I get most upset about is the fact that Cancer doesn't give us a choice, we get it, and then we have to deal with it, then we have to deal with it even when its 'OUT' of us, and then we have to deal with thinking about it. Talk to anyone and everyone who will listen. You will be surprised who steps up to the plate and listens. If you click on my picture/name, you can read my story. The only blessings I see are that we all caught this beast when we did and are doing something about it. We all just need to let our voices be heard, through friends, family, co workers.....let everyone know, so they too can be informed and proactive if need be. Janna, try and do the things you like...it's hard when you're tired and you hurt. For me, I tried to put my makeup on every day, and have fun with the bald thing....I wore buffs (you know, like in the survivor show)....I got pretty colored ones etc...for me it wasn't so 'cancer' looking. I bought shoes, clothes, and just tried to laugh.....not easy when you feel like crap but sometimes it helped. Were you able to harvest any eggs??? some people have done that, I didn't (they were too old and I didn't think of it until too late)....anyway, these are just some random thoughts. Do hang in there, 'cos thats what we do:-) Huge TEAL hugs to you. Julie xoxoox0 -
Sorry you have to be here
talking about ovarian cancer at 29. I was 43 when diagnosed and was blown away when I got the diagnosis. I only had pain for 1 day - apparently the tumors had gotten so large they were cutting off the blood supply which in turn caused pain.
You have received awesome advice and please know you can come here any time and vent or ask questions and somebody will be there for you. I was diagnosed in July 2007 and am currently in remission. I too had IV/IP chemo, but was only able to get through 2 of the IP treatments as my abdominal port was constantly infected - it was horrible. Nancy 707 is the only person I've heard that made it through so many of the IV/IP chemo's - but as you probably heard having this type of chemo is supposed to give you 16 months more survival time.
I finally started counseling this past October when I could no longer ignore the fact that I was horribly depressed. I had been on Ativan for over a year but only took it really to help calm my mind before appointments are at night if I couldn't sleep. I am now on an anti-depressant the name that has now escaped my mind (memory problems suck!) and it has been like night and day. Something to look in to. I did NOT want to take any more drugs - but I'm so glad I tried.
You hang in there. Sending good thoughts your way.
Kris0 -
CA125 rising already :Okris43 said:Sorry you have to be here
talking about ovarian cancer at 29. I was 43 when diagnosed and was blown away when I got the diagnosis. I only had pain for 1 day - apparently the tumors had gotten so large they were cutting off the blood supply which in turn caused pain.
You have received awesome advice and please know you can come here any time and vent or ask questions and somebody will be there for you. I was diagnosed in July 2007 and am currently in remission. I too had IV/IP chemo, but was only able to get through 2 of the IP treatments as my abdominal port was constantly infected - it was horrible. Nancy 707 is the only person I've heard that made it through so many of the IV/IP chemo's - but as you probably heard having this type of chemo is supposed to give you 16 months more survival time.
I finally started counseling this past October when I could no longer ignore the fact that I was horribly depressed. I had been on Ativan for over a year but only took it really to help calm my mind before appointments are at night if I couldn't sleep. I am now on an anti-depressant the name that has now escaped my mind (memory problems suck!) and it has been like night and day. Something to look in to. I did NOT want to take any more drugs - but I'm so glad I tried.
You hang in there. Sending good thoughts your way.
Kris
Hi everyone,
I'm newish here, just joined a few weeks ago, but have been in hospital since.I'm back now for some advise please...
I'm ovca 3c dx June 08, had major debulking surgery, and finished 6 rounds chemo IV/.IP end of October. My ca 125 went from 200-12 and has been 12 for the last three checks. I had my IP port removed a few weeks ago after quite severe abdominal pain. The pain however continued and got worse to the point of admitting to hospital, only to find out I had a small bowel obstruction. Thinking this was probably due to adhesions they treated me conservatively to see if it would settle without surgery, which it has.(and of course my dr's are all away on holidays still!!) I am still on a sloppy diet till I can see the surgeon next week to see what the next step is as far as if the obstruction is likely to happen again when i eat normally?
I've now just found out my ca125 has jumped from 12-74 in the two weeks I have been in hospital :O
The relieveing oncologist says the cancer has probably already come back, what we thought may have been adhesions is probably cancer...How can this be??? I've only just finished all this chemo (esp IP chemo that is supposed to give me extra 12-18mths)I'm shattered!!! This can't be happening so soon.
Please... has anyone else had any experience similar or know of anyone's progress especially after the IP chemo treatment. Still trying to get my head around it all..
Thanks for any thoughts
Take Care.......luv Carolyn0 -
CA-125softD said:CA125 rising already :O
Hi everyone,
I'm newish here, just joined a few weeks ago, but have been in hospital since.I'm back now for some advise please...
I'm ovca 3c dx June 08, had major debulking surgery, and finished 6 rounds chemo IV/.IP end of October. My ca 125 went from 200-12 and has been 12 for the last three checks. I had my IP port removed a few weeks ago after quite severe abdominal pain. The pain however continued and got worse to the point of admitting to hospital, only to find out I had a small bowel obstruction. Thinking this was probably due to adhesions they treated me conservatively to see if it would settle without surgery, which it has.(and of course my dr's are all away on holidays still!!) I am still on a sloppy diet till I can see the surgeon next week to see what the next step is as far as if the obstruction is likely to happen again when i eat normally?
I've now just found out my ca125 has jumped from 12-74 in the two weeks I have been in hospital :O
The relieveing oncologist says the cancer has probably already come back, what we thought may have been adhesions is probably cancer...How can this be??? I've only just finished all this chemo (esp IP chemo that is supposed to give me extra 12-18mths)I'm shattered!!! This can't be happening so soon.
Please... has anyone else had any experience similar or know of anyone's progress especially after the IP chemo treatment. Still trying to get my head around it all..
Thanks for any thoughts
Take Care.......luv Carolyn
I'm not sure if this helps, but I'm a 3 year survivor, diagnosed at stage 4. I wasn't a candidate for surgery or IP chemo, just regular IV chemo, and I have never had a CA-125 reading below 180 (I started out at 1300). My onc told me the CA-125 level is not a perfect indication. It IS affected by other things. They use it mainly to look for trends - so if it gets still higher in your next test, then it may indicate a problem.
I sense that you are scared, and fear is not unreasonable. We're cancer patients, we're supposed to be a little scared, but you are still putting one foot in front of the other and I salute you for that. Hopefully other "teal warriors" will have more useful information.
I'm sending hugs, good wishes and prayers (if you don't mind).
Edwina0 -
Deep BreathssoftD said:CA125 rising already :O
Hi everyone,
I'm newish here, just joined a few weeks ago, but have been in hospital since.I'm back now for some advise please...
I'm ovca 3c dx June 08, had major debulking surgery, and finished 6 rounds chemo IV/.IP end of October. My ca 125 went from 200-12 and has been 12 for the last three checks. I had my IP port removed a few weeks ago after quite severe abdominal pain. The pain however continued and got worse to the point of admitting to hospital, only to find out I had a small bowel obstruction. Thinking this was probably due to adhesions they treated me conservatively to see if it would settle without surgery, which it has.(and of course my dr's are all away on holidays still!!) I am still on a sloppy diet till I can see the surgeon next week to see what the next step is as far as if the obstruction is likely to happen again when i eat normally?
I've now just found out my ca125 has jumped from 12-74 in the two weeks I have been in hospital :O
The relieveing oncologist says the cancer has probably already come back, what we thought may have been adhesions is probably cancer...How can this be??? I've only just finished all this chemo (esp IP chemo that is supposed to give me extra 12-18mths)I'm shattered!!! This can't be happening so soon.
Please... has anyone else had any experience similar or know of anyone's progress especially after the IP chemo treatment. Still trying to get my head around it all..
Thanks for any thoughts
Take Care.......luv Carolyn
Carolyn -
First of all I don't think the interim physician should have told you anything. There is another woman on the site that had a rising CA 125 until her IP Port came out - she had an infection. ANYTHING can make the number rise - so try to remain calm at this point until your oncologist returns and you can ask questions. They may do a CT scan to be sure - but if your problems calmed down, then it probably was adhesions. I had IP chemo as well but only made it thru 2 of the 6 total treatments because of problems with the port. I have been in remission or NED since Dec of 2007. I keep that thought of those extra months that IP chemo is supposed to help provide always in my mind -
I'd find out when the doctor is to return and get an appointment ASAP, go in with your list of questions and see what the game plan is. Hopefully it is nothing.
My best to you.
Kris0 -
29
It is so scary to me how young people are getting this horrible disease, I don't understand it. I was 46 when I was dx with 3c ovarian, but I have a 22 year old daughter I worry about.
I think the doctors really need to listen to us and then get together and figure this out.Hope you find answers and some comfort here.
God bless and hugs!0 -
Deep breaths...? recurrencekris43 said:Deep Breaths
Carolyn -
First of all I don't think the interim physician should have told you anything. There is another woman on the site that had a rising CA 125 until her IP Port came out - she had an infection. ANYTHING can make the number rise - so try to remain calm at this point until your oncologist returns and you can ask questions. They may do a CT scan to be sure - but if your problems calmed down, then it probably was adhesions. I had IP chemo as well but only made it thru 2 of the 6 total treatments because of problems with the port. I have been in remission or NED since Dec of 2007. I keep that thought of those extra months that IP chemo is supposed to help provide always in my mind -
I'd find out when the doctor is to return and get an appointment ASAP, go in with your list of questions and see what the game plan is. Hopefully it is nothing.
My best to you.
Kris
Hi Kris and Edwina,
thankyou so much for your replys, it's always nice to hear other peoples stories and experiences and words of encouragement when times get tough. I have managed to get oncologist appt tomorrow and surgeon on Friday to see whats next?? I'm feeling rather nervous but also keen to move forward with whatever I have to do...just really disappointed that it's not even 3 months since I finished chemo.
I'll let you know what happens and thanks for all your support and good wishes
Take care...luv Carolyn x0 -
Follow up
Thank you everyone for the kind words... It has been a tough month. I ended up going blind for a short time and have been in the hospital most of the time. I am getting my eye sight back and still waiting to take my last chemo. The blindness was caused my hemoraging at the back of my eyes due to low plateletes.
Thanks for everything!
Janna0 -
Blindnesssqueax said:Follow up
Thank you everyone for the kind words... It has been a tough month. I ended up going blind for a short time and have been in the hospital most of the time. I am getting my eye sight back and still waiting to take my last chemo. The blindness was caused my hemoraging at the back of my eyes due to low plateletes.
Thanks for everything!
Janna
Dear Janna,
my goodness how scared you must have been losing sight! It's bad enough with the cancer treatment, but to have complications like that is horrific. I am so sorry you have had to go through all this, and I hope your sight returns to normal very soon.
All the best to you, stay strong and take care...luv Carolyn x0 -
We're Here
Janna,
I'm glad you've joined the board for support. This is not an easy diagnosis for any woman, and it must be especially hard on someone who is of child-bearing age. My story is on my "About Me" page. Although I was diagnosed at an earlier stage, I had great anxiety for a while after I started reading more about the disease. I've gotten by that, either through maturity or the realization that it's pretty much out of my hands as long as I'm trying to live a healthy life.
Any woman or girl who has ovaries can get ovarian cancer. I've read about pediatric cases, which must be very devastating.
I recently spoke to a woman about her IP treatments. They were a real trial for her, and you sound as though they're getting you down. She finished hers some time ago, and is upbeat and vivacious! I hope you'll do as well.
When I was feeling anxious or bad while having treatment, I would tell myself "In xx (so many days), I'll be beyond this", and I practiced deep yoga breathing to calm myself.
Think positive thoughts and do something nice for yourself! You'll get through it before you know it!
Sue0
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