Ovarian Caner Survivors- Psychological and Emotional Effects

[hs1405]

To anyone who can help,

I am in my 3rd year currently studying Psychosocial Oncology at University. I am researching for an assignment about the psychological effects of cancer, in particular ovarian cancer and I need some help. I wondered if anyone would be happy to help me and volunteer to discuss your experience. I would not want anyone to discuss something they do not want to.
Thank you very much for taking your time to read this. I would really appreciate your help.

Hollie

[SimplyStar]

I could just say ditto to the above.  Same story with my daughter, 4 1/2 months of being told and treated for IBS and was even told "don't worry it's not cancer".  second opinion, got the right tests, surgery 5 days  later  stage 3. They taught us to do home tests for breast cancer but there is no "home test" for this.  Sending out the message to the medical schools to teach the doctors about OVCA would help.  Getting the high and mighty AMA to advise their charges that OVCA is recognizable if they would only listen and keep it in mind when they run up agaist these symptoms.  Good Luck in your studies.

[crecco]

I completely agree with Helen. I to was treated for several things including irritable bowl syndrome,chronic constipation, depression to name a few before being dx. Also by then I too was at stage IV. But not only does the medical community need to be made more aware, women all over the world need to be made more aware. I found it amazing just how little I knew about this disease until I was dx and am continually amazed at how little most women really do know. I have been asked countless times if it was found when I had a pap done! Due to the fact that the majority of women are not dx until it is well advanced, I feel that ov ca needs the same awareness as breast cancer. If that could happen I really think that more women could be dx at a much earlier stage, therefore stopping this monster from taking the lives that it does.  I wish you the best of luck in your studies.  Chris

[Helmar]

Hi Hollie...yes, there is one thing that I feel could improve... and must improve, and that is, the medical profession are made more aware of a disease called Ovarian Cancer. It's frustrating and annoying when one goes to and fro from the Doctor's Office with symptoms that are not normal, and to be told for months that it's irritable bowel syndrome, gasto, nerves, just a stomach upset.... and for me, this happened for over 9 months before I was finally dx with Stage 4 OvCa. If the Doctors are made more aware of this 'sneaky' disease, and just took the time to investigate thoroughly, without just passing it off as something of not much concern, then many of us would be dx much earlier and have a better chance of long remissions/cures. Hopefully with the help of your studies, and more Doctors becoming aware that OvCa does exist, this can be rectified, and Doctors will begin to take women, who complain about their unusual symptoms... more seriously. At the moment this doesn't seem to be happening, thus more ladies coming here who are Stage 3-4.
Amyhow, thanks for your interest Hollie... and all the best for your future good work.   Hugs..Helen..

[hs1405]

Hi,

All your comments have helped my so much and I really feel for you all. You have all been through such an ordeal and I cannot imagine what it must be like. But you all sound as if you are fighting and perhaps thats the best way to be- positive state of mind and you can do anything!

But I do have one more question for you all- what else do you think can be done? Is there anything missing (any information or research) that would make your quality of life better- something you wish you had known or now you are a survivor- especially in relation to psychological and emotional well being.

Thank you all and I hope you all feel okay today, tomorrow and in the future
Hollie x x x

[vegas2cr]

Hi, I am a stage 4 cancer survivor so far.. I was diagnosed this April.  I was already disabled and had to quit working 2 years ago due to diabetes type 1 which I have had for 42 years.. the neuropathy finally caught up with me.. I try not to think too far down the road especially about my kids and grandkids...
Role reversal has happened in my household.. My husband never boiled water until this year and now he has become quite the accomplished chef... He never drove me anywhere and now after chemo and hospitals etc I don't drive much... I will drive to go shopping but then he calls on the cell phone 45 times in 40 minutes.  He tries to strangle me with love... and i thank G-d he is there for me.  I am just not used to it..
I retired to Costa Rica from the states and my kids who used to call once a week now call 3 times or more and I have told them to knock it off... They have made several trips down here especially my youngest son who is 33 and he has been here 6 times since April.. he even when interviewing for a new job recently explained he needed some extra time off every 3 months to come visit me.. My kids and friends have been wonderful...
My life has changed and the fear, and fright are always there, but I take each day and hope I feel well.  My grandaughter is 13 and she asked me to please not die until she gets married.. kids huh? My life is different but in some ways I feel blessed that everyone who I care about has told me how much they care about me...
I would like it to not be so but in the meantime I am not wasting anytime I am planning my trip to Europe in May... I am going to the states for a couple of weeks in Dec... you just have to live.
Ronni

[Helmar]

Hi Hollie....Long term affects re cancer treatment etc. Well being a Stage 4 and with the prospects of being on chemo for the rest of time (it's been just on non-stop since '04) my biggest concern is how long can my body take this poison. I did raise this with my Oncol. stating that I thought that the chemo would take me out in the end, but he insists that it will eventually be the cancer... but we'll see. To me it's being treated like a chronic disease, and as I am very lucky in not getting nausea or feeling ill, and still able to maintain my good appetite throughout, my quality of life is still good. I feel that is one of the main problems with having/treating this disease... we need to try and maintain a good quality of life. In my case, having this cancer, and with my husband not able to cope anymore and leaving our longterm marriage, it has made me even more independant than what I've always been. I live alone, but have two caring and wonderful children, who are a great support to me... and I have great friends, although none of them know about my cancer. I've chosen to keep this info within my immediate family, so when I meet my friends for lunch/coffeee... we can talk about 'normal' things, and I don't get bombarded with questions, or worst still... evaded. :-)  I suppose at the end of the day, having this late stage cancer which shows poor stats for long term survival, I take each day as it comes, enjoy what it has to offer, and hope and pray for more to follow. Unfortunately we don't have any control over what the cancer does, so it's best to do what we can to improve our situations, but don't dwell on the past, or what could happen in the future. One day at a time... get the best out of each day. My prognosis at the beginning of this journey wasn't good, and I think in the light of what the original scans showed, I am very blessed to still be here...feeling well, and enjoying life. I've even taken out my next year's membership with my football club. How about that for tempting fate. :-)
I'm just happy to be alive and as well as to be expected under the circumstances, and I don't even think of what could happen in the future. To me, that is many years down the track. :-)
Wishing you all the best with your studies Hollie....hugs...Helen..

[rmarie]

When I mentioned returning to work, my employer started to say something about my return.  I related that I was covered under Americans with Disabilities and nothing was said.  Accommaditions were made while I was on chemo.  When I came off chemo I returned to my previous job.  This year, 2 years out with cancer, I had the recurrance and had to change my job, drop previous responsibilities.  It is a loss and it is just one more thing that cancer takes from you and it hurts.  Cancer brings losses, and the losses mean that a part of you changes.  However you pick yourself up and keep on keep on.  My new job position is a challange and has me busier than before, so where is the change?  Less responsibiltiy and less time.  With the recurrance, other than 5 weeks to recover from surgery, I have worked full time.  I hit the OC demographic I am 63, I carry the health insurance, and it is great insurance so I need to keep working till medicare.  I don't like the chemo side effect of peripheral neuropathy because it affect my mobiltiy, I can't walk 5 miles with my husband like I was, however we do go to the gym together.  Again losses, but it won't take hope.

[hs1405]

Hi everyone. I feel overwhelmed how strong and positive you are about fighting the illness especially  as you all have said there is a constant fear or reminder- it being at the back of your mind. You all have gone through- or known someone who has gone through cancer and I can't imagine what it must be like going through something like this. We had a lecture today and it was about support and carers- the main point was that positive social support and positive intrinsic feelings not only disminishes the psychological distress but important for survival. So I hope you all stay positive.

I hope you don't mind me asking more questions. I have the impression that the short term psychological consequences range from anxiety, anger, uncertainity, perhaps guilt or hopelessness or even a fighting spirit? But what about long term long-term effects of cancer treatment on future health, social, and employment prospects? How has it affected your independence, perhaps role changes with spouse or family members and ambitions?

I wouldn't want anyone to answer something they rather not but I really thank you for your honest and frank discussions. I really do appreciate it. Thank You Hollie.

[rmarie]

When they told me I had cancer, the doctor telling me, did not tell me to bring someone with me.  He told me that I had ovarian cancer and asked what Gyn/Onc I wanted to see.  I only knew who I did not want. Then they moved me to another room and drew blood test CA 125,  The person who was drawiing my blood,  did not say much to this crying shaking woman, there were no words of comfort.  They let me leave the office in that condition.  My husband worked an hour away, I talked to him and I went back to work to be with friends who helped me.  I left when my husband was home in and hour.  The next day I was still crying so I went to family practice and got xanax, which helped me stop crying.  On Monday I saw the Gyn/onc and I went on autopilot for 2 months.  My husband researched the physician and the chemo.  I was the good patient.  I did not go back to work for 2 months, however I did continue to exercise because it helped my mental state.  In January when I went back to work, I researched everything I could find on OC in the medical journals and textbooks, I am a nurse and can easily get to them.  As I learned more, I became more involved in the treatment.  

It was great when you complete the chemo, however scary at the same time.  You go from being checked every 3 weeks to 3 months.  I truly believed that I had beaten this cancer and was going to get a long remission.  My CA 125 was low, however I was nauseated.  My Family practice Dr. ordered 2 diagnostic test, 1 was because I had cancer.  When he called me to tell me about the recurrance, his first question was where are you and who is with you.  I knew before he called that it wasn't going to be good.  Again you go into the waiting period, while they do more testing, decide how to treat it, have surgery, start chemo.  I am trying to keep myself calm, and I accomplish this with and hour of exercise 3 to 4 days a week and 1 hour plus weight lifting 3 days a week.  I enter the gym tired and leave with endorphns.  

I work hard for a remission and to keep it, and I will fight and do chemo for as long as i have the energy and the will.  I do not want the chemo to take me out however.  I have discussed everything with my husband,  I have this need to help him with what happens if this damn disease ends up winning.  We don't talk about cancer very much, however we do live with it.  You could call it the elephant in the room.  Deep breaths are taken with clear scans.

Hope this helps.

[Helmar]

Hi Hollie,
   The University of Sydney here in Australia has just about completed a 'Quality of Life' study which I presume would be something similar to what you are looking at. They have been running this for a couple of years now...just asking women around our country who have OvCa, and also their 'carers,' questions on how ovca has affected their lives etc. I think it's a great idea, and gives them the vital information needed to help support ovarian cancer patients and their families in all facets  of this disease. I wish you well, and hope you get lots of info from here.
My personal experience has been to take it as it comes... I don't worry about anything that I don't have control over, as I'd rather put my energy and resources into fighting it. I was dx Feb04..Stage 4. Had heaps of chemo since... just about non-stop, but luckily don't suffer from nausea so have been able to keep up my good appetite. Because of the ongoing treatments, doctor's appointments, blood tests,, scans, tiredness, .......and this does impact on our normal lifestyle... my marriage is over, as hubby couldn't tolerate the changes, so he's gone. I think that has been the biggest 'downer' for me, but life still goes on. I have a strong will to survive as long as I can, and won't give up in fighting this.
Good luck with your studies Hollie.... Helen... DownUnder...

[Jan214]

I hit something I shouldn't have.  To finish: when you stop to think about it too long the most horrible thoughts rush through your brain.  I am on Gemzar now and the emotional and mental effects of this are worse than the Carbo/Taxol.  You don't want to be around anyone or talk to anybody.  I startle very easily,  I have panic attacks and can't stand for things to be the least bit out of place. I told my husband one day that I was so bad off I didn't even talk to myself the whole day.  Yes, I do that a lot. Sometimes you think of the letters you should write or I'll remind my husband to make sure my oldest daughter gets this or that.  Or asking friends to really be there for him when I die.  Not just the first couple of weeks but to really be there.  Sometimes you just feel so alone because everything is relatively normal in everyone else's life other than the usual hurry and scurry, but your world has changed drastically.  Please understand you asked about the emotional part of this but we don't usually give in to those fears.  We on this forum are all much tougher than that.  There are the days when you go to chemo with a bunch of chocolate covered strawberries and alleviate some newbies fears.  They see you upbeat and happy and they are less afraid.  There are the days when I can still work hard physically; it is just the lose of mental agility (quick thinking) that bothers me the most.  That and feeling weak.  I have never been a weak woman and am not happy about being physically weak now.  I hope this helps.  Feel free to ask more specific questions.  Good luck.
Jan

[Jan214]

The mental toll this monster takes is sometimes overwhelming.  I don't know where to start.  My mom died of this when I was 8 and that was 1964 so the image I had in my mind was quite different than the reality.  She just laid around for a couple of years dying and there was nothing they could do and she just wasted away.  When I went through it the first time I looked at it sort of like my gall bladder surgery.  I would have the surgery and chemo and I would be done with it.  That kept me very positive and in fighting mode.  I cried buckets at the prospect of losing my hair and even more when I did.  I don't look like me anymore & I don't feel very much like a woman most days.  I have 2 college degrees and I used to do Petitions for Writs of Cert for the US Supreme Court and now I can barely put a proper sentence together.  One of my degrees is in English and it hurts to have chemo brain so effect my ability to write.  You loose a lot of confidence.  Most of the time I am fine but when you stop to think about it too long the most When it came back in less than 6 months the fear really set in.  

[Jan214]

The mental toll this monster takes is sometimes overwhelming.  I don't know where to start.  My mom died of this when I was 8 and that was 1964 so the image I had in my mind was quite different than the reality.  She just laid around for a couple of years dying and there was nothing they could do and she just wasted away.  When I went through it the first time I looked at it sort of like my gall bladder surgery.  I would have the surgery and chemo and I would be done with it.  That kept me very positive and in fighting mode.  I cried buckets at the prospect of losing my hair and even more when I did.  I don't look like me anymore & I don't feel very much like a woman most days.  I have 2 college degrees and I used to do Petitions for Writs of Cert for the US Supreme Court and now I can barely put a proper sentence together.  One of my degrees is in English and it hurts to have chemo brain so effect my ability to write.  You loose a lot of confidence.  Most of the time I am fine but when you stop to think about it too long the most When it came back in less than 6 months the fear really set in.  

[SimplyStar]

I do not have cancer but my daughter does. It is devastating to me as a Mother to see all the challenges that she must face. My first reaction was a wish that I could take it from her. As a care provider I do not feel the pain but by listening to her I know. It is one disease that likes to control the minds of its victims and their families because it is such a bad thing.  For me personally it is never far from my mind. It has turned me to prayer much oftener. I felt a lot of guilt at the beginning, I am a nurse and yet I did not recognize her symptoms, neither did the doctor for 4 and 1/2 months.  I get very upset reading stats on cancer deaths, and encouraged by reading the survivor stories.  It takes a lot of courage to face cancer, the unknown is always there.  One of the things that most all OVCA ladies will comment on, is the lose of their hair.  It destroys their feeling of being feminine.  The young ones  their ability to bear children.

[crecco]

As with any cancer there are a number of emotions that a person goes through,with the main ones being denial, guilt and fear. You eventually get past the denial and guilt, gut the fear never really goes away. It is always in the back of your mind. For some women the hysterectomy part can be just as bad as the cancer itself because they feel as though they just aren' t really a woman anymore. But for the most I think the more they learn about this disease the angrier they get. We want answers that no one can give us. Such as why couldn't it have been found sooner, why hasn't there been more research into the disease itself, and why have we lost so many to it. Once we were dx, we realized that our lives would never be the same. For most of us all we want is to beat this monster and live as normal as we possibly can. Some women deal with it better than others, but that is the case with almost anything you face in life. The one thing we all have in common is a chance to see an end to this monster.  Chris

[rmarie]

I am not sure what you want to know