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The questions I have been afraid to ask

ptharp
Posts: 190
Joined: Oct 2012

Is there a point when an Ovarian Cancer patient can say they are in the clear? You hear all the time "I made it to my 5 years". Is there a time frame for Ovarian Cancer? Does everyone get it back after they are in remission? What exactly is remission mean? Do you still have cancer when you are in remission? I am looking for some kind of hope here. When do you stop crying all the time after your inital diagnosis? After surgery the oncologist said looks like we got it all. What the heck does that mean? Then if the doc got it all why do I have to have Chemo and why is the doc telling me he can get me into remission?

I went out of the house for the first time since my hysterectomy (had it 10 days ago) with friends for a bite to eat. I thought it would feel good to get out and think about something else, but it make me feel different from everyone else. I felt jealous that everyone at the table had their health, Is this normal to feel this way? When I was in the hospital bed the woman next to me got news that her basketball size tumor was benign. I was mad...why her and not me? I felt terrible about feeling this way but could not help it.

When do you stop crying all the time? When do I feel this "empowerment?"

I hope I did not scare anyone away with these thoughts, but someone on the board said you could be open and not be judged.

Mwee's picture
Mwee
Posts: 1312
Joined: Nov 2009

"I felt jealous that everyone at the table had their health".... I've heard similar statements from everyone I know who has recieved a diagnosis like we have. I had lots inner conflict with the thoughts of why I didn't realize something was wrong with my body earlier. I have a cousin who is a retired GYN and she told me that even she wouldn't have known with the type of symptoms that OVCA displays.

It's great news that your ONC thinks they got it all. They give you chemo to kill any stray cells and although chemo isn't a picnic, it is necessary and doable. When are you scheduled to start chemo? Let us know what chemo you're having like carbo/taxol, etc. and they'll be many of us who have had that type of infusions and we'll be able to help you prepare and tell you what you can expect.

For now, it's so important that you are good to yourself. You've had a life changing dx and major surgery. It took me far too long to realize that my ONC and the (wonderful!) chemo nurses were partners with me in this battle. I thought I had to tough it out. Tell them how you are feeling for it's nothing they haven't heard before. There are anti-depressants, anti-anxiety meds, etc. that can really help. ((((HUGS))) Maria

ptharp
Posts: 190
Joined: Oct 2012

I guess I am confused. I know it sounds good that they think they got it all. The Oncologist said the tumor was encapzulized. In cancer talk what does that mean? That the cancer was encased in something. Is this an advantage?? I go October 18th to see the oncologist and talk about my pathology report and discuss treatment options. Options??? I am going to listen to them all and then tell the him, "What would you want you wife, sister, mother, daughter to have?" That is what I want. From what I understand it may be not next week but the week after when I start the Chemo.

Glad to be done's picture
Glad to be done
Posts: 558
Joined: Jul 2012

Your feelings are truly legit... I wallowed in the fact I had ovarian cancer for exactly one week and then I pulled up my big girl panties, put on my gloves and got ready to fight. I think people would be lieing if they said they never had all the feelings you are having. Everyone has them. I woke up one morning and did my normal routine - coffe, shower, get dressed. Well when I got out of the shower and looked in the mirror I began to cry when I thought that one day I would look in the mirror and I wouldn't have any hair.. Scared the hell out of me but it was at that same point that I said "I have Cancer...Cancer does not have me"... I am bigger than it and I WILL beat it". And that it what I did. I fought like hell and I am now NED (no evidence detected).

I have totally accepted the fact that my cancer may return but I refuse to sit and count the minutes till it does.

I am back to my old self (with some aches and pains now and then), working, playing taxi for sports for my kids, going to games and meets and I am LOVING life. I live every day to the fullest.. I have a greater appreciation for my kids, my husband, my family and my friends. Without every one of them having my back this winter I wouldn't have been able to do it. And it was with all of them I celebrated with the day I got the news of my clean scan.....

ptharp
Posts: 190
Joined: Oct 2012

Your story sounds very much like mine. I too went to the ER for pain in right side. When the doc took out my tumor he said it was encapulated also but whey are worried because a node sitting next to the tumor looked emflammed. He said just because it looked inflammed does not mean there is cancer in it. We have to wait for the report.

I too think about hair loss. On a good note, it does grow back and I have heard sometimes curly. I guess it is taking me longer to pull up my big girl panites. My husband tries to be supportive and says, "We will fight this togehter" and I want to say, but dont, "where is your cancer?" Hopefully, I will get to that point.

There lots that scare me besides the ultimate. The hairloss, the fatigue, not being able to work, etc.

2timothy1 7's picture
2timothy1 7
Posts: 330
Joined: Jan 2012

Hi there. Thanks for your honesty. I think most all of us have felt that way at some point and may feel it again sometime. I was diagnosed 3c nov,2011. Currently in remission. My understanding is that remission is when ct scan is clean and ca125 is below 35. I've also heard another word for remission is "hiding".
I feel like I am stumbling around in the dark at times trying to figure out what I'm supposed to do with my life since this diagnosis. It sure turns your world upside down. Some things have gotten back to normal though. I have went back to work part time after 9 months off. That has been a big help to take my mind off things.
I suppose we will never be quiet the same person before diagnosis. In some ways that is good. Brings important things in life to surface more often. I heard someone on another board say "Hope is a candle burning inside of you and when you are at wit's end, God lives there." I have felt His presence when I have been at wit's end and how precious that was!

As far as feeling jealous of the woman beside you with the benign tumor. She too will face something serious someday. Right now, your body is trying to adjust to physical and emotional trauma. Things will calm down.

Love
Shawnna

Ruffy7
Posts: 126
Joined: Sep 2011

Just another thought, while the cancer dx can and does throw a person's world upside/down, general anesthesia also can mess up your system for a while (you only had surgery 10 days ago?). I'm not a crier, but for several weeks after my surgery, I would cry at the drop of a hat - really threw people (esp coworkers) off since it is so unlike me. My surgeon also said that he thinks he got it all, so far all scans/bloodwork seems to support that but we'll see.

Sounds weird but after a time, esp. when you are in the watch/wait mode at least for me, you get tired of cancer and thoughts of it coming back, and you don't want/or let it get to you. I still have times especially when it's time for the 3 month scan/onc visit when I get worried but the rest of the time, I seemed to be bored with cancer :). I'm 16 months out from my dx. I figure I can worry about it coming back in 1, 5, 10 years but it may not, and then I've wasted all that time worrying.

Anyway, it's a process, and you have to just allow yourself to feel what you feel. For me that was the only way for me to get past it. Just accept and acknowledge your feelings, don't beat yourself up for them, they lose some of their power when you accept them. Time does help. Hang in there!

Tethys41's picture
Tethys41
Posts: 1053
Joined: Sep 2010

It is normal to be scared with this diagnosis. And your questions are reasonable. Doctors base their treatment protocol on what has had the highest success rate in clinical and other trials. As far as ovca is concerned, the most, best outcomes have resulted from surgery followed by 6 rounds of carbo/taxol or 6 roudns of carbo/taxol/avastin, for first line treatment. That is pretty much the standard treatment. It is good that they got it all during your surgery, but the risk is that there are still cancer cells floating around, and they want to use the chemo to get those. You are never really cured. There is always a risk that it will return. I know women who have been NED for more than 15 years and then had a recurrance.

The frustrating thing, to me, is that the doctors treat the patient with chemo, which damages your healhty cells, and once you are NED, they just have you wait around until it comes back. Generally it does, sooner or later. So, what they have done, is taken an already compromised body, killed off some of the bad cells, and some of the good ones, found no visible disease and done nothing to keep your immune system strong, and able to fight off the remaining cancer cells. Chemo rarely, if ever, kills off all the cancer cells. If your blood was tested after chemo and becoming NED, there would still be ovarian cancer cells in it. So, it is no surprise to me that within some given amount of time, the patient develops tumors again. The compromised body has received no support after a harsh chemical treatment.

The solution to this, and where I find empowerment, is to work at getting the body healthy and keeping it that way. At the risk of sounding like a broken record, a healthy, balanced body cannot grow cancer.

abrub's picture
abrub
Posts: 1528
Joined: Mar 2010

How can we not resent the fact that we are sick, and the person next to us is healthy? You are still very early in this process. Believe me/us when we say that you will settle down once you have a plan in place, and know what is happening. Yes, encapsulated is good - it means that the cancer was likely contained.

Your head is still spinning; I know mine was for many weeks. Yes, I needed sleeping pills, because when the lights went off, my brain went on overdrive.

If there is a Gilda's Club, Hope Club, or other cancer support group near you, get involved. You'll see that your feelings are normal, and get to talk with others who have been through the same thing. American Cancer Society is a good place to start, as is your oncologist's office.

I'm now going through a new "why me?" episode, as I'm having surgery on Tuesday to remove 2 growths from my breast - a lumpectomy. Dr thinks they are benign, but wants them completely out and examined to be sure. I hate surgery (as do we all.)

Sending you hugs and understanding. You are not alone,

Alice

ptharp
Posts: 190
Joined: Oct 2012

Thanks for your words. If cancer is encapulated does that mean it has a better chance of going into remission. That is what it sounds like for me.

I am sorry you have to have surgery. I too hate surgery. I will keep my fingers crossed for your dx. How long have you been cancer free? I remember you said yours was appendix cancer. I assume you no longer have that appendix. Is appendix cancer an aggressive type?

abrub's picture
abrub
Posts: 1528
Joined: Mar 2010

My understanding is that encapsulated means that the cancer is contained, and therefore more likely to be completely removed. Understand that I am not a dr; this is just my understanding of the term. Based on that, yes, I would say that your likelihood of remission is higher than with an unencapsulated cancer.

There are many types of appendix cancer. Some are extremely aggressive. However, I am fortunate that mine was not agressive, and even tho there was extensive peritoneal seeding and mets, my surgeon was able to remove it, and direct chemo into my belly (IP chemo) seems to have cleaned up the rest. I also did systemic chemo. I've been cancer-free for about 5 years now, and hope that my surgery on Tuesday will show that I don't have a new cancer to add to the mix.

Thank you for your kind thoughts.

Alice

ptharp
Posts: 190
Joined: Oct 2012

I hope also that you do not have another kind of cancer. I wikk be thinking of you.

kikz's picture
kikz
Posts: 1266
Joined: Jun 2010

been able to accept the fact that I have cancer. After treatment when I had the dream of it never coming back, I still worried but worked very hard not to let it rule my life. Now with my recurrence I am blessed to be in the best of health and feel in many ways better than I ever have. Maybe it is just appreciating my life that enables me to focus on today. I am so happy to be here today. I use to be a worrywart. I let everything be a "big deal." Now, the big deal called cancer is in my life and though it can't be ignored, I won't allow it to be the main thing. I try to make everything else more important.

Of course there may be a time in the future when it once again becomes the main thing, but for now I have to live my life as if it is not even there. How could I possibly thumb my nose at how wonderful I feel? I call it my golden time. I coined that phrase for myself before my recurrance. I was in my car and it just occured to me that I was in remission and it was my golden time. I thought the golden time was over once the cancer recurred but I still feel this is golden time because I don't feel sick.

Though we are all on the same journey, there is no single way to handle it. We all have to come to terms with the disease and learn to live with it. But I am glad you understand that you can share anything here. It has been a godsend to me.

My best to you.

Karen

lovesanimals's picture
lovesanimals
Posts: 1209
Joined: Sep 2011

As the other women have said already, your feelings (fear, anxiety, anger, jealousy, and sadness among others) are all so understandable and I am glad you are sharing them here. Please come here anytime as you make your way through this journey. We'll gladly support you in any way we can. I've been NED (no evidence of disease) for two years and I myself haven't been able to resolve the questions about recurrence and remission. All I know is that I want to try to live each day to its fullest because truly no one knows how long they have on this earth.

Take care,

Kelly

Glad to be done's picture
Glad to be done
Posts: 558
Joined: Jul 2012

I too was told my cancer was encapsulated and that I dodged a bullet. When my pathologu report came back they found it microscrscopicly on the two lymph nodes my right encapslated ovary was sitting on. the washes and everything she biopsied (alot) came back clean

ptharp
Posts: 190
Joined: Oct 2012

Are there any cases of Ovarian Cancer that stays in remission for ever? Is that even possible?

abrub's picture
abrub
Posts: 1528
Joined: Mar 2010

I don't see why it wouldn't be possible, especially with the improvements in treatments over the years.

For many cancers, after a certain number of years of NED or remission, you are considered likely to be cured.

ptharp
Posts: 190
Joined: Oct 2012

What is the number of years for Ovarian Cancer?

abrub's picture
abrub
Posts: 1528
Joined: Mar 2010

Someone else will have to answer that. I know that for Appendix cancer, there is no outside limit - it commonly recurs at the 10-15 year mark, and it is too rare for much to be known. I'll be scanned for life.

Tethys41's picture
Tethys41
Posts: 1053
Joined: Sep 2010

I'm sure it's possible. Unfortunately a lot of people who are NED for awhile drop out of the support community, so we don't hear that much about them. I know of a few women who had a first recurrance and then are into a very extended period of NED, 15-25 years. SO, they may end up being NED forever, after their first recurrance. I don't know if there are statistics anywhere of the women who had ovarian cancer and then died years later from some unrelated issue. I think they consider you "cured" after a five yera remission, but some women have a recurrance after five years.

lulu1010's picture
lulu1010
Posts: 367
Joined: Feb 2011

I belong to a support group that has several long term survivers. I dont know what stage they were and I dont think any of them had second recurrances. I was glad to hear Tethys41 say that long remissions are possible after a second recurrance.
I believe they consider you cured after 10 years for ovarian but I know several have had recurances many years later.
Also I read somewhere that Carboplatin ( the usual first line chemo used) decreases seratonin levels leaving you a little more weepy. I dont know if it is true or not but I found a low dose anti-depressant very helpful especially while on chemo.
Wishing you the best!

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