17 year survivor here. How can I help?

[nolabean]

Hi, I think it's way past time I started giving back and helping others, but I don't know where to begin. I am a real technophobe, don't even know how I stumbled across this site :). I would like to do anything I can to help others in this situation. At the time of my experience, I was raising a 14 year old daughter alone and had to work during my entire 6 month round of chemo with no help from family....I just thank God Almighty for my friends. So, I know what it's like to be in the fight of your life. I am at work now and probably should not even be on this site, but, hey, some things are just more important than work! I will try to stay on this site as long as possible in the hope that I will receive some replies directing me on how I can go about helping others. When I was going through it, I would have given anything just to be able to talk to a survivor. Remember, you are NOT alone. God Bless

[MickeyVickiNumber1]

Another thing to consider - your symptoms read like classic symptoms of perimenopause.  I know; I started to develop them early (in my thirties.)  

However, do have a proper appointment to discuss your symptoms with your doctor, and  continue to ask that your doctors perform additional tests if your symptoms continue.  Better safe, than sorry, is the rule.

By the way, have they checked your hormone levels?   Including your thyroid hormone levels?  

[SimplyStar]

I am on the missing list right now because I am visiting my son out of state, when I saw your post about 17 years  I immediately emailed my daughter and told her,  I am in high hopes that my daughter is grated those years plus more.  Thanks for coming and sharing.  God Bless, Marty.

[nolabean]

Something I forgot to mention regarding staging. Due to the fact that the ovary had ruptured, spewing tissue all over the abdominal cavity, all of the docs on my case agreed that staging was an educated opinion. I don't know how staging could even be done at all with malignant tissue not confined, but spread throughout. I'm sorry, I know this doesn't help, but I am just telling you what I can.

[nolabean]

monserrat, Honey, I have only one thing to say to you, if you can raise 7 children alone, you certainly have the guts to face cancer or anything else you're faced with. I do not mean to make light of your situation and I certainly pray that your diagnosis is not cancer, but you've got the guts to take on anything, people like yourself REFUSE to be defeated by cancer. I am not a fan of the phrase "positive thinking" as I think it's way over used, but I do like the term "fight like hell", it has always served me well. I hope you have good docs and are given excellent care.
Lafin, I KNOW how scared you are, I cried a lot too, didn't make me feel any better. Getting pissed off and letting it out made me feel better. I also listened to relaxation tapes specifically designed for people battling cancer. I am just now learning to meditate, at first I thought it was a crock, but as time goes on, I find that it really is making a difference in me. Maybe you would like to give it a try, what the heck, it can't hurt. I have known others who have had success with biofeedback and visualization too. Anything that doesn't put you in danger is worth a shot!  I never did lose all my hair, but what I did lose, didn't all come back. Everyone else I've know lost it all and it came back better than before. I always was an odd one :)
When I was sick, I had so many people praying for me. Up until that time, I was not a very religious person. I still don't go to church, but I am spiritual and pray to God many times each day, I believe it helps. Good night to all, sweet dreams.

[Lafnatitall]

Wow...17 years!  Thank you for wanting to share with us and lend your support.  I'm a stage 3C, diagnosed in November...one chemo down.  I have lost my hair, before I could shave it myself...I wanted to show that I was STILL in CHARGE!!!  I get scared a lot, cry a lot, laugh alot, and continue to find the support is phenomenal here...thanks for joining the ranks!  

[monserrat7]

Hi Cara, I really admire your willingness and opennness when talking about your experience. I am also a single mother raising 7 children and the thought of OVCA scares me to death. Recently (as of 10 months), I've been experiencing symptoms that are very consisten twith a DX of OVCA, but of course I am not a doctor and have to wait for additional testing. At my annual exam, the doctor said that my uterus felt larger than usual and recommended an ultrasound and a mammogram. Apparently, my mammogram came back abnormal and I have to fo in for additional imaging including a breast ultrasound and another mammogram. Results of my vaginal ultrasound suggest some growths, but I'm no sure where. The nurse calle dto give me those results and she did not have much information. I'll be seeing the gynocologist immediately after my second mammogram to discuss results of all my testing. The following is a list of the symptoms I've been experiencing thus far: excessive bloating, significant loss of appetite, excessive and persistent gas, weight loss, heartburn, pain (sometimes sharp and quick) that lasts a few seconds around my pelvic area, heavy periods, and excessive pressure in the pelvic area during my period. I know that a lot of these symptoms can also be related to IBS,endometriosis, etc,, but I think I have more OVCA symptoms than for other conditions. Next time I see my doctor I'mm going to request a CA 125 lab test, is there anything else I should request? My sister in law who was an OB/GYN from Mexico died of OVCA within 6 months after being diagnosed. Her doctors did not listen and only prescribed Peptobismol for heartburn. It scares me to think that this too can happen to me. I need all the help I can get in trying to solve this puzzle. I have 7 children and don't know how any type of cancer diagnosis will impact my children and/or my ability to provide for them financially. Thanks. Hope you all have a restful and peaceful holiday. I will pray for all of us and hope for some prayers from you as well. God bless.

Monserrat

[nolabean]

You are awesome!
One thing we all have to remember is, there ARE survivors at all stages, be it 1 or 4! Some who were Dx as 1 don't make it and some 4's DO!  I do not know that staging, in and of itself, is a complete indicator of how we end up. It may be a guide as to the treament protocols we are given, but, no matter WHAT the stage, we all have hope!
It has been my experience that people who survive this hideous disease do so for a complex variety of reasons. The one constant I have personally seen is people who are willing to just go along like sheep and have no fight in them have the worst outcome. I went totally BONKERS! I screamed like a banshie (sp?), would pull my car over on the highway, punch the steering wheel and curse like a sailor. I threw things. When I felt like it, I hit the walls, or any other inanimate object that happend to be around. I never kept my opinion of anything to myself, I must have been a ***** on wheels. I found the funniest movies or comedy shows to watch. If the spirit moved me, I ran around my apartment naked and would have done so outside in the moonlight if I could have found a private place, I didn't want to get arrested :). I got very physical, running, throwing and breaking things. This may sound nuts to some of you, but I believe this helped me to release all the negative **** inside of me. Other survivors I have known have taken somewhat of a similar approach. If other people don't understand (some of my firends didn't) so what, this is YOUR life, not theirs, they'll just have to get over it. GO FOR IT! There is a new movie coming out soon with Jack Nicholson and Morgan Freeman called "The Bucket List". It addresses things I have just mentioned, you might want to go see it.

[nolabean]

Jan, I have been seeing a PhD for PTSD from 9/11 and Katrina, I was directly affected by both of these tradgedies. Of course, we have discussed the OVCA. Less that a year ago my shrink developed cancer. Recently she told me how surprising it was to realize how one views cancer if they have never had it themselves and how you view it when you are diagnosed. I think most highly of my shrink and certainly take NO joy in the fact that she had cancer, but there is a certain sense of comfort in knowing that now, she too fully understands. What is unbearably painful for me is knowing that there are still, even after more than 17 years, so very many women going through this. That there have been little, if any advances in early detection or treatment options. These are the things I find so painful to consider. Cara a/k/a nolabean

[kismetfarm]

wow you go girl!

I think we do often get stuck in the statistics here and forget that at all stages of OVCA there are some people who will never have a recurrence.  And that is really important to know when it all looks bleak (often not helped by the likes of the first oncologist I had who kindly told me OVCA would kill me, no ifs it was just a matter of when)

I do believe that antinausea meds have improved since you had your chemo though - sounds like it was pretty rough for you.  

For some more positivity I have just had the 7 year anniversary of my diagnosis, yes I've had recurrence and it isn't responding very much to anything, but it is a long way from killing me yet.

[nolabean]

I responded a short time ago, but it didn't post. I certainly was not talking about you! I was responding to a message I received from someone here. I should have know better that to just burst in here and expect to be accepted at face value, that was very naieve of me. It should have occured to me that this forum, like many others, has it's share of vile and sick individuals who come here for reasons known only to them. I apologize for coming on so strongly.
I was surprised to find a report of my first surgery so quickly. I was admitted to the ER after my ovary ruptured, I won't go into all those details, but get down to what conclusions are written here, I am typing directly from the report. St. Luke's Hospital July 13,1990. Final Diagnosis. Right ovary and fallopian tube cyst andemocarcinoma predominantly endometroid and focally, moderately differentiated. Serocystis of fallopian tube and ovary. Appendix-lymphoid hyperplasia. Appendigeal serositis. Free-floating peritoneal mass was adenocarcinoma consisting the primary ovary. primary tumor in the ovary. Hysterectomy specimen showed serocytis. Corpus luteum cyst of the ovary and evidence of malignancy in the other. Significant abnormalities. The tumor in the right ovary was well to moderately differentiatied cyst adenocarcinoma showing both endometroid and mucinous features. Operation: diagnostic laparoscopy,laparaotomy, right salpingo-oophorectomy, frozen section, total abdominal hysterectomy, left salpingo-oophorectomy and appendectomy. Diagnoses: Papillary mucinou and endometroid carcinoma of the right ovary, ruptured. The patient had stage 1C ovarian carcinoma. I typed this exactly as it appears.

[PF_PVD]

Please tell me you are not talking about me!  I reread my message and can't find a "whack job" in there, but if you can, please point it out to me.  I don't need this kind of stress on top of stage iv cancer, and if you are talking about me I will leave the list to you.

[Jan214]

You do not have to prove your identity anymore than the rest of us do.  Yes, there have been some whack jobs on here, but we run them off pretty quickly.  Some of us know each other's real emails and home addresses and we have to be very careful about the info we share.  The net is not a safe haven even though we all feel like we know each other on here.  I am concerned that after 17 years you still find your experience with OVCA unbearably painful.  Perhaps that is something you could talk to your minister or a counselor about.  Holding onto that kind of fear can't be healthy physically or emotionally.  If you don't want to seek counseling, we would be glad to help you work through it the best we can without being shrinks.
Jan

[nolabean]

I have received a message which leaves me hurt and bewildered. It seems I am not trusted by some here, which is understandable, but I certainly do not want that to be the case. I will try my best to answer questions, but as I have posted previously, I am not all that computer saavy and may miss some questions. If, as time goes on, someone here is unhappy with my presence, I will voluntarily leave. It's like I told the person who sent me the message, dredging up these memories is not a pleasant experience for me, in fact it is almost unbearably painful. No, I'm not some martyr or saint, just someone trying to do somethig for others. Now, to address the staging question, which seems to be at the root of all of this. Due to the fact that my ovary ruptured and I had a belly full of pus, I was told that staging was very difficult. I still have a copy of what I believe is most of the pathology report. I will search for it, read through it and see if I can find any information related to staging. I realize there are some evil people in this world who may join forums such as this for some sick reasons, let me assure you, I am not one of them. I understand skeptism and, short of revealing my comlete identity to everyone at this time, I am willing to go to great lenghts to prove to you that I am who I say I am.  My name is Cara, I will be 60 years old next month. I have one daughter, she is a lawyer. If any of you here can tell me a safe way of communicating with you personally and want to do so, I am definitely open to that. Thank you.

[PF_PVD]

I am glad you are here to offer encouragement as all long-time survivors' stories do for me.  It would be most helpful to me, though, to know what stage/grade you were at dx to put things in perspective.  If I missed this info in a posting somewhere, I apologize.  I am stage iv/grade 3 which I must keep in mind when comparing notes with others.  I'm in research, so I always like to compare apples to apples or at least fruit to fruit!

[newlifegal]

Thanks so much for your encouragement!  I am only a 2 1/2 year survivor of IIIc and have to admit that I am surprised I am still here.  I've dealt with metastatic brain tumors requiring gamma knife and whole brain radiation, port infections,pulmonary embolisms, DVT in my right leg, allergic reactions to chemo and several paracentisis and thoracentisis procedures.  Steroids have caused me to gain 25 lbs so I feel like I've been striped of many things:hair, looks, mobility, lost hearing of my right ear and to a certain extent my intellect from all the radiation.  Yet you do what you have to to fight this.  I'm currently dealing with a second recurrence and have been on chemo for the last 6 months.   It sounds like this will be how my life will go in treating this chronic disease.  I do pray that the time I have left is quality time--want to be feeling good at the birth of my 2nd grandchild expected in late May.  

My best wishes to you all.  Merry Christmas!

Christa

[crecco]

That is one thing that a lot of us can be very thankful for, that fact that they have come so far with chemo now. It has changed so much in the past years. I understand that it is really nothing now compared to what it used to be. When I was first dx, I was scared of the chemo more than anything I think. But it turned out to be nothing like what I had thought it would be. Some of the side effects are not to pleasent but the actual chemo itself is not hard at all. I am sorry that you had to go through it the way that you did. They give you so many pre meds any more that most people just breeze right through it. I do understand, as I have done my share of crying, cursing, laughing, ect. But I do believe that all of those emotions are just a natural part of a cancer dx. and we just have to learn to deal with each of them. But the chemo brain? it is just there. But I have noticed that different chemo drugs affect it different. On some I have noticed it has eased up some but then i switch to something else and it doesn't take long for me to realize it is getting worse again. Oh well that just means that i need to go out and buy more little notebooks to keep my lists in. I don't recall reading what stage you were dx at. You are right, humor helps in so many ways, though it doesn't seem like there should be anything funny about cancer, we just have to find it in what ever way there is. It is better to laugh at it than sit and worry and cry, because the worrying and crying get you no where. The laughing may not either, but it sure as heck makes you feel better. Thanks  Chris

[nolabean]

The sickness from chemo was the worst part for me. At the time, I had a small half bath in my bedroom with a window. I will never forget my last chemo treatment it was the day after Thanksgiving 1990. I decided to count the number of times I threw up. It was the middle of the night, I was laying on that bathroom floor, no point in trying to sleep, what with the violent vomitting and unsavory activity at the other end of my body from the force of vomitting. I had counted up to 72, I was in such bad shape, I was looking out the window at the sky and a plane flew over, I convinced myself it was an angel who had come to help me and I started talking to it. I am still amazed that I was told the chemo could cause leukemia and other fun stuff, but no one ever told me how badly it would mess with my head. To this day, my memory is only about 75% of what it was before chemo. My thyroid is shot, funny thing, I lost 35 pounds from throwing up, but after my thryoid took leave I gained 80. I used to have beautiful thick hair and a thin body, now it's thin hair and a thick body. Don't get me wrong, I'm not complaining, I find some dark humor in it. I am thankful that the chemo does not affect everyone like that. Humor helped me a lot. On my first visit to the med onc I asked him if the cancer was going to kill me. He wryly smiled at me and said, "no, but WE might kill you". At the time I was mortified, then realized it was just his sense of humor. I did a lot of laughing, crying, screaming, pillow punching, cursing and other crazy stuff, but I believe letting it all out is what saved me. Oh, and I found this site quite accidentally, you know, I really can't remember how it happened.....ah, chemo brain,:)))

[nolabean]

Pelvic pain? Sure on and off, also many, colon function "issues". I used to get scared too, but not anymore. I have a strong sense that my battle with cancer is finished. I recently had a CA125, it's been years since I had one, the test result was 9.

[crecco]

I understand what you are saying. I am just a 2 year survivor,but I was so sick at the time that I never dreamed I would still be here. I have felt for a long time now that I am here for a reason, and just lately have begun to realize that the reason may just be so that I can help others fight this battle. As you said friends and family are great but talking to others who know and understand is what helps more than anything. Thank you so much for finding us!  LOL Chris

[RdgTeacher]

Wow!  17 years!  That's awesome!  I was diagnosed in Jan of 07 and had 7 IV and 2 IP chemos.  My last one was in September.  

Did you ever have pain in your pelvic area after you were clear?  I've had some on and off pain during chemo and still now.  My doctor thinks it's surgery related (scar tissue).  My CA 125 continues to go down, my CAT scans have been clear, and my physical exam didn't indicate anything suspicious.  But I still get scared.

Thanks for your offer to answer questions!

JoAnne
Texas

[nolabean]

Thank you Helen. I feel very humbled to be here. I just read another thread about a lady who lives in my hometown, somehow I feel there are forces at work here that I don't understand. Something or someone brought me to this site and I believe there is a good reason for it. Like I said, I will do ANYTHING I can to help another woman get through this. Even though it was 17 years ago last June, in my heart and mind, it seems like last month. I am haunted by the need to DO something to help others. Hey, we're all in this together, WE are all we have. Family and friends are good to have, but when it comes right down to it, only someone who has been through it can really understand.
Hugs, back atcha!  Cara

[Helmar]

Hello.. just your presence is like a little beacon of light to us here. Any support is very welcome, and congrats on your wonderful history of battling this beast. Hugs...Helen..

[nolabean]

Thank you for welcoming me. Believe me, it is my pleasure to be here and to do all I can for anyone fighting this battle, I know how impossilby tough it seems. I remember one chemo treatment in particular, my vomitting could never be controlled, so the doc told me I could be hospitalized overnight and they could help me. Ah, that didn't work too well. All they did was give me twilight and I was terrified of laying down and aspirating vomit. Every time I threw up, I buzzed the poor nurse. She would come in and sit with me. At one point she rubbed my back and said, "no one should ever have to go through this". Her kindness meant so much to me, she literally got me through that night. If I can help even one person like that dear nurse helped me, I will be thrilled!

[Mary 53]

Hello, And, welcome to the forum.

I just posted to you on the thread started by Snickers7.

Take care, Mary