A bit over whelmed

heathercurry

Hello all..
I am new to this site and I guess looking for a place to feel normal for a bit. I am 23 years old and was diganosed with ovarian fibro sarcoma. Origanlly it was thought to be a cist the size of a grape fruit on my ovary. During the first surgery they removed the growth, and when the results came back I was back in surgery 16 days latter to remove my right ovary. Now I am living life as best as I can but have a constant fear of the unknown factors. I had my second PET scan two days ago and there was some "hot spots" on my righta and left side of my uterus so next week I have an MRI and then who knows what from there. I have seen so many doctors in the last three months and am now stuck with a doctor that I am not to thrilled with. It seems that my mother and I are teaching him how to do his job in several areas. Is it just me or is amyone else finding it frustrating that there is a lack of support for such a serious life changing issues. I would change doctors, but there is only one oncologist on the Island of Hawaii so I am stuck. I plan to fight this cancer no matter what. I just feel over whelmed and I am having trouble staying "positive". If anyone has experienced any of the same issues please share. Lately I feel as though all my peers, family and friemds feel for me but do not understand what it's really like to live day to day with cancer.

mopar

OVERWHELMED
Heather:
I'm so sorry to hear what you are going through, especially at such a young age. We are hearing this much too often lately with young women.

Well, I am a two-time OVCA survivor, and I'm sure you will get lots of other responses to your posting here as well. I would imagine that, because of your age, they were trying to save one ovary in the beginning. But once they had to remove the second ovary, why didn't they just do a complete hysterectomy? I don't believe there's value to keeping the uterus once both ovaries are gone; and given the circumstances, I would have expected them to remove everything.

It's unfortunate that you don't have a good oncologist, one who is thorough, one you can trust and feel comfortable and confident with. Any family in the states that you can hang out with while seeking out another doctor? Does he/she plan on having you go through any treatments? Do you get CA125 blood tests on a regular basis? What stage is the cancer? I think much of your 'faith' in this doctor will come from their aggressiveness in treating this disease. And as you read through other stories of survival on this website, you'll find that many women have gone through this more than once, and many have been going through it for several years, so there's always hope. But our doctors needs to be right on top of things and work with you, support you, keep you informed, and give you all the options.

How we get through this is one day at a time. More importantly, it's family, friends, and for me, especially my faith. Because even through family/friends would like to help, sometimes they don't know what to do, or understand what we're feeling and thinking. That's where this website comes in and any local support you might have. How about the American Cancer Society - maybe they can direct you to someone in your area. If you have a supportive church group, or women's group, etc.?

I hope this has helped you, Heather. In the meantime, I send my thoughts, hugs and prayers. Hoping to hear from you again soon!

Monika

gabbag

overwhelmed
I was diagnosed with ovarian cancer Monday this week. It's still a shock and I know what you mean about so many doctors and tons and tons of paperwork. My doctor that was to tell me yes or no about the cancer examed me and found breast cancer too and stood the whole time and was headed for the door while my husband and I pelted him with questions that he answered in short answers. Then he and the nurse practioner were out the door and my husband and I looking at each other and whoa!! But later the doc apologized. He thought I knew already. And I think things will be better now as far a communication.

carol2dogs

Come here often
Heather,
I am so sorry you are going through this, especially at 23. Monika had such wonderful comments - I agree completely with her.
I certainly understand about seeing so many doctors all of a sudden. I am 54, 52 when diagnosed, but I had always been one of those super-healthy runners who only saw doctors when required for employment-related medical tests. Now if feels like I practically live at the cancer center. I would like to echo Monika's suggestion that you find a way to get an oncologist you can feel comfortable with. It is so crucial to be able to trust and to communicate with your oncologist. In the meantime, do lots of internet searches and learn as much as you can - sounds like you may need to take the lead in your care.
Please do come here often. We understand what you are going through. It has been my experience that family and friends have the best of intentions but can sometimes seem very insistent that you only be the stereotypical "positive and courageous" cancer patient. I am sure that even Lance Armstrong had some bad days in his fight, so you most certainly are entitled to some.
Sending you lots of love and hugs, Carol

saundra

Overwhelmed
You have come to a good place to ask questions and will find we will share our love, experience and understanding with you, but you will be making your own decisions about your health care and I encourage you to read all you can about ovarian cancer. A book I found very helpful is "A Guide to Survivorship for Women with Ovarian Cancer" by F.J. Montz and Robert E. Bristow, a Johns Hopkins Press Health book that you can order from Amazon.

My cells are adenocarcinoma so I am not familiar with yours. I was diagnosed March, 2007 and the best advice I had was to got to a large teaching hospital and have a gynecologist/oncologist do the surgery.
I live in Texas and had the choice of Texas Oncology or M.D. Anderson. I chose Texas Oncology and had my surgery in Baylor Hosp. at Dallas. My chemo is given in my home town because Texas Oncology has a facility here and I don't have to travel. I have had the optimum results with surgery and chemo (Taxol and Carboplatin) for my Stage IV. The cancer spread throughout my abdomen clear to the liver (three tumors there which were burned out with radio frequency ablation).

Depression is common with us and many of us need a low dose antidepressant and anti anxiety medication in order to sleep and function. You may not need this at all. Faith has been my mainstay and I keep a journal daily to help vent my frustrations.

Know that you can come here and vent anytime you want. Good that you have your mother with you.
You always need someone to help ask questions and take down notes on the answers.
(((Hugs and prayers))) Saundra

Ararat

saundra said:

Overwhelmed
You have come to a good place to ask questions and will find we will share our love, experience and understanding with you, but you will be making your own decisions about your health care and I encourage you to read all you can about ovarian cancer. A book I found very helpful is "A Guide to Survivorship for Women with Ovarian Cancer" by F.J. Montz and Robert E. Bristow, a Johns Hopkins Press Health book that you can order from Amazon.

My cells are adenocarcinoma so I am not familiar with yours. I was diagnosed March, 2007 and the best advice I had was to got to a large teaching hospital and have a gynecologist/oncologist do the surgery.
I live in Texas and had the choice of Texas Oncology or M.D. Anderson. I chose Texas Oncology and had my surgery in Baylor Hosp. at Dallas. My chemo is given in my home town because Texas Oncology has a facility here and I don't have to travel. I have had the optimum results with surgery and chemo (Taxol and Carboplatin) for my Stage IV. The cancer spread throughout my abdomen clear to the liver (three tumors there which were burned out with radio frequency ablation).

Depression is common with us and many of us need a low dose antidepressant and anti anxiety medication in order to sleep and function. You may not need this at all. Faith has been my mainstay and I keep a journal daily to help vent my frustrations.

Know that you can come here and vent anytime you want. Good that you have your mother with you.
You always need someone to help ask questions and take down notes on the answers.
(((Hugs and prayers))) Saundra

need help
Hi Saundra,
i am very new to the site, but I have been reading it for a while
I have stage 4, grade 3 endometroid adenocarcinoma..poorly differenciated..
I had 3 chemo taxol/carbo.. and than 15 radiotherapy for dthe tumor into pelvic and vaginal area........
i did not respond well.. maybe not at all.. tumor got smaller but not enough..
So, doctors are dropping me.. ( means, wait for my time to die)..
But, gyno/oncologist said she will email her colleques to University hospital research doctor if He can help ???
Any Remarks form you.any other regiment beside Taxol/Carbo that MAY effect?
thank you,

heathercurry

mopar said:

OVERWHELMED
Heather:
I'm so sorry to hear what you are going through, especially at such a young age. We are hearing this much too often lately with young women.

Well, I am a two-time OVCA survivor, and I'm sure you will get lots of other responses to your posting here as well. I would imagine that, because of your age, they were trying to save one ovary in the beginning. But once they had to remove the second ovary, why didn't they just do a complete hysterectomy? I don't believe there's value to keeping the uterus once both ovaries are gone; and given the circumstances, I would have expected them to remove everything.

It's unfortunate that you don't have a good oncologist, one who is thorough, one you can trust and feel comfortable and confident with. Any family in the states that you can hang out with while seeking out another doctor? Does he/she plan on having you go through any treatments? Do you get CA125 blood tests on a regular basis? What stage is the cancer? I think much of your 'faith' in this doctor will come from their aggressiveness in treating this disease. And as you read through other stories of survival on this website, you'll find that many women have gone through this more than once, and many have been going through it for several years, so there's always hope. But our doctors needs to be right on top of things and work with you, support you, keep you informed, and give you all the options.

How we get through this is one day at a time. More importantly, it's family, friends, and for me, especially my faith. Because even through family/friends would like to help, sometimes they don't know what to do, or understand what we're feeling and thinking. That's where this website comes in and any local support you might have. How about the American Cancer Society - maybe they can direct you to someone in your area. If you have a supportive church group, or women's group, etc.?

I hope this has helped you, Heather. In the meantime, I send my thoughts, hugs and prayers. Hoping to hear from you again soon!

Monika

Thank you for all of your
Thank you for all of your comments and supportive words. The first surgery was only to remove the cist. The doctors first thought that it was not cancer so they saved my ovary. Then with the lab reporst came back it was found to be fibro sarcome grade 1-2. A pet scan showed hot spots on my right ovary, where they had removed the cist, so they then removed the whole ovary. My Pet scan on Wednesday showed two hot spots, one where my right ovary was and another on my left ovary now. From the little information out there, ovarian fibro sarcoma does not react well to cemo or radiation so the doctor is not sure what he wants to do. Also there are no blood markers for this cancer.

I have been taking zanax for anxiety and have scheduled an appointment with a counselor to seek support. It is comforting to know that I am not the only one living this. Thnak you. I think I am going to tell my doctor what I need from him as far as support and treatment. If he is not willing to work with me then I will fight for a new doctor. My first impressions of him where not to good, so I hope that maybe he lacks the social part and will become more involved after I tell him my needs as a patient.

Thank you again for all of your comments.. It really makes me feel better to know that there are others out there living through this as well.

Much appreciated
-Heather

heathercurry

gabbag said:

overwhelmed
I was diagnosed with ovarian cancer Monday this week. It's still a shock and I know what you mean about so many doctors and tons and tons of paperwork. My doctor that was to tell me yes or no about the cancer examed me and found breast cancer too and stood the whole time and was headed for the door while my husband and I pelted him with questions that he answered in short answers. Then he and the nurse practioner were out the door and my husband and I looking at each other and whoa!! But later the doc apologized. He thought I knew already. And I think things will be better now as far a communication.

I feel ya
I am sorry for your experience with your results. As a new-be to this whole issues as well I have little experience. But I do know that everyday that goes by I feel a little more like "me" and a little less scared. The begining shock has faded a bit and I am learning that this is now part of my life. I hope that the next few weeks go as well as they can for you and that the shock will be a little less every day.

heathercurry

carol2dogs said:

Come here often
Heather,
I am so sorry you are going through this, especially at 23. Monika had such wonderful comments - I agree completely with her.
I certainly understand about seeing so many doctors all of a sudden. I am 54, 52 when diagnosed, but I had always been one of those super-healthy runners who only saw doctors when required for employment-related medical tests. Now if feels like I practically live at the cancer center. I would like to echo Monika's suggestion that you find a way to get an oncologist you can feel comfortable with. It is so crucial to be able to trust and to communicate with your oncologist. In the meantime, do lots of internet searches and learn as much as you can - sounds like you may need to take the lead in your care.
Please do come here often. We understand what you are going through. It has been my experience that family and friends have the best of intentions but can sometimes seem very insistent that you only be the stereotypical "positive and courageous" cancer patient. I am sure that even Lance Armstrong had some bad days in his fight, so you most certainly are entitled to some.
Sending you lots of love and hugs, Carol

Thank you
Thank you for your advice. The funny thing in your comment is, that when I first found out the results I played Sheryl Crow's cd for the first two days and kept thinking that she survived so can I. Funny where we find comfort.. Thank you and today I am begining my research into this. You are right, I need to know what care I need to empower myself. Thanks again.

saundra

Ararat said:

need help
Hi Saundra,
i am very new to the site, but I have been reading it for a while
I have stage 4, grade 3 endometroid adenocarcinoma..poorly differenciated..
I had 3 chemo taxol/carbo.. and than 15 radiotherapy for dthe tumor into pelvic and vaginal area........
i did not respond well.. maybe not at all.. tumor got smaller but not enough..
So, doctors are dropping me.. ( means, wait for my time to die)..
But, gyno/oncologist said she will email her colleques to University hospital research doctor if He can help ???
Any Remarks form you.any other regiment beside Taxol/Carbo that MAY effect?
thank you,

I don't know where you are, but I am in Texas. A University hospital may have some other treatments for you. My tumors did respond to the 4 treatments of taxoll/carbo by shrinking to half size before I had the major debulking surgery. I had no radiology. Following surgery, four more chemos and then the CT scan was clear. my adenocarcinoma is pappillary which is a different cell type from yours. There are many more chemos for adenocarcinoma to try before giving up mentioned in this discussion group. Any reason given by your doctor as to why they are not trying taxiterrie or gemsar for example? It is good that you have a gyno/oncologist. I will pray that you get an answer soon from your doctor's e-mail. Saundra

mhcarlisle

It's really scary, isn't it?
I'm really sorry you're going through this-I went through something similar. Earlier this year, I was diagnosed with dysgerminoma, a rare form of ovarian cancer that thankfully responds well to treatment. I was 21 at the time and had to leave school suddenly at the end of the semester. It grew right before my eyes and by the time the tumor was removed, it weighed 7 lbs and was 13"x12"5". We got it out hours before it would have killed me. I had to have another surgery 9 weeks later to stage it and thankfully it had not spread.

I agree with what the others have said. Having an oncologist you feel comfortable with and who has had experience with your cancer makes a world of difference. It must be really frustrating to not be able to get what you need. I'm sorry you're not out of the woods yet-it's really scary to have such uncertainty hanging over your head.

Good luck and stay as positive as you can. Best wishes, take care, and stay strong.

Maya

LondaDraper

I'm lucky considering what I've read...
and I know it. I live outside of Washington, DC where I have a wonderful gyn/onc - one Dr. from a very fine practice that has offices in VA and MD, and approximately 10 physicians that specialize in Ovarian/Breast/Cervical/Uterine, etc...i.e. woman cancers. I'm Stage IV, Ovarian Cancer - TERMINAL, but still hopeful because I'm moving forward, positive and waiting anxiously for remission. I've had my first round of chemo (taxol/carbo) followed by surgery and I started, last week, round two of chemo (gemzar/carbo) but had a reaction to the carbo this time. At my next Dr. visit, we'll be discussing the introduction of cisplatin with gemzar. Of course, I've had my ups and downs, but I embrace death, and want nothing more but to die in peace. Let me add; my CA-125 is 16.3 from over 4800 (YES, OVER 4800 when diagnosed 12/2007), I have a few small spots remaining on my liver and lung, and I'm confident I'll beat the odds. If not; let me help someone else!

Too depressing? I relate to ALL of the posts I've read, and we all have so much in common - CONFUSION, FEAR, ANXIETY, and CHAOS. "It is what it is," so keep moving forward. Ovarian cancer is one of those obscure diseases with little research. Each of us, as painful as it is, are contributing the best way we can (with good/bad/indifferent physicians, a wide spectrum of blood work-ups, differences in where our cancers have spread, support systems, race, age, etc.) to our own recovery and the possible cure! Each appointment you keep is a step in the right direction.

I've felt so lost during this whole event, but it's been about 8 months since I was diagnosed at age 44, and I'm seeing much clearer now. I've come a long way and I intend to "keep paying it forward," if not for me, but for you.

saundra

LondaDraper said:

I'm lucky considering what I've read...
and I know it. I live outside of Washington, DC where I have a wonderful gyn/onc - one Dr. from a very fine practice that has offices in VA and MD, and approximately 10 physicians that specialize in Ovarian/Breast/Cervical/Uterine, etc...i.e. woman cancers. I'm Stage IV, Ovarian Cancer - TERMINAL, but still hopeful because I'm moving forward, positive and waiting anxiously for remission. I've had my first round of chemo (taxol/carbo) followed by surgery and I started, last week, round two of chemo (gemzar/carbo) but had a reaction to the carbo this time. At my next Dr. visit, we'll be discussing the introduction of cisplatin with gemzar. Of course, I've had my ups and downs, but I embrace death, and want nothing more but to die in peace. Let me add; my CA-125 is 16.3 from over 4800 (YES, OVER 4800 when diagnosed 12/2007), I have a few small spots remaining on my liver and lung, and I'm confident I'll beat the odds. If not; let me help someone else!

Too depressing? I relate to ALL of the posts I've read, and we all have so much in common - CONFUSION, FEAR, ANXIETY, and CHAOS. "It is what it is," so keep moving forward. Ovarian cancer is one of those obscure diseases with little research. Each of us, as painful as it is, are contributing the best way we can (with good/bad/indifferent physicians, a wide spectrum of blood work-ups, differences in where our cancers have spread, support systems, race, age, etc.) to our own recovery and the possible cure! Each appointment you keep is a step in the right direction.

I've felt so lost during this whole event, but it's been about 8 months since I was diagnosed at age 44, and I'm seeing much clearer now. I've come a long way and I intend to "keep paying it forward," if not for me, but for you.

Stage IV
We need to start a new topic as the replys to this one is getting too long. I feel similar to you, Londa, but I need to tell you that don't give up the fight. You seem to be on the same treatment schedule that I went through last year. After the second round of chemo after my surgery my CA125 dropped to 4 to 7 and has stayed there. I have completed 10 of 12 lower doses of TAxol at present and the CT is clear. I look at ovr/ca as a chronic disease that I deal with and look forward to the vacation away from chemo. I had my inoperaaible liver tumors burned out with radio frequency ablation. Have you heard of that? I too, had a mild rash with carboplatin but got 8 down with prednizone and other steroids. I will be 70 in a couple of months and when I started this Oddyesy, in March, 2007, I thought I had 10 months. Isn't it great how time changes our perspective? Fight on, ladies. Saundra

LondaDraper

saundra said:

Stage IV
We need to start a new topic as the replys to this one is getting too long. I feel similar to you, Londa, but I need to tell you that don't give up the fight. You seem to be on the same treatment schedule that I went through last year. After the second round of chemo after my surgery my CA125 dropped to 4 to 7 and has stayed there. I have completed 10 of 12 lower doses of TAxol at present and the CT is clear. I look at ovr/ca as a chronic disease that I deal with and look forward to the vacation away from chemo. I had my inoperaaible liver tumors burned out with radio frequency ablation. Have you heard of that? I too, had a mild rash with carboplatin but got 8 down with prednizone and other steroids. I will be 70 in a couple of months and when I started this Oddyesy, in March, 2007, I thought I had 10 months. Isn't it great how time changes our perspective? Fight on, ladies. Saundra

Haven't/won't/Not Giving Up
I guess I'm just practical...

I don't miss appointments. I have first post-op CT-Scan on Wednesday, 8/27 and I'm anxious about the results since my right side hasn't been favoring any remote possibility of feeling well.

I ask questions. Even though I have so many of them; I try to ask them. My Doctor has coined me, "the most improved patient," and "a walking miracle." He's amazed, truly astounded by my progress, and it's because this 'little ole thing' isn't going to get me down. I see him next Friday, and I'm considering the question; "do you think a visit to NH could be fit in amidst all these treatments?"

I sleep for many hours a day. I'm (un)fortunate enough to have every day to myself since losing my job just prior to diagnosis. "Everything happens for a reason," and although I could spend so much more time doing things I would enjoy doing; that isn't the hand I was dealt.

I'm realistic. While I do spend some time crying, making decisions, weighing options, and driving all over Virginia; it's with a positive attitude and vigor!!!! I don't want this to beat me, so I keep moving forward. I have four daughters that need me around for awhile so I can love, nurture and TORMENT them.

Take care and you are an inspiration to all of us!!!! I enjoy reading your posts. They are full of precise information...
Londa