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what should I be watching for if there is a reocurrance?

Dreamdove's picture
Dreamdove
Posts: 175
Joined: Sep 2008

I am 15+ months cancer-free and very proud! But I can't help feeling concerned about it coming back. I was stage 3. I'm not bloated and there's no pain. I did have a bowel obstruction in Dec. 2007 but nothing showed up in the tests and it went away while I was hospitalized. I have regular 3 month checkups and have one at the end of this month.

BonnieR's picture
BonnieR
Posts: 1549
Joined: Jan 2004

Hi :-) Just wanted to say congratulations on 15+ months cancer free ~ that is awesome!! Also it is normal to have feelings of concern and know that the 3 months checkup will catch it if does recur. Also just to let you know my sister was 3c and has been cancer free for 7 years now. Make sure you allow yourself the feelings of anxiety but don't let them overwhelm you. Be happy with the day that God has given you, with all the blessings that come with it. :-)

Hugs N Prayers Bonnie

Philippians 4:6 Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.

Dreamdove's picture
Dreamdove
Posts: 175
Joined: Sep 2008

Bonnie, thanks so much for the encouragement. I'm glad I recently joined this website. I see by your profile that you are currently going thru struggles of your own. That makes me more thankful that each day I feel well. I had a dream last night that I went in for my checkup and found out my doctor was on vacation. So I had a sub and he didn't examine me or give me any tests. That made me anxious so I expressed my concern. I was trying to figure out the meaning of that dream but I'm sure it shows some anxiety on my part.

So you and your sister both had ovarian cancer, 3C? I had 3C also. I was so thankful it didn't spread to my bowells, which was the fear the doctor had before the operation. When I had the bowell obstruction in Dec., on Christmas evening, I was afraid it had come back. But apparently nothing came of that because here I am, feeling well. Sometimes I worry about my sister because there is alot of cancer in my family. Alot of women had breast cancer. I am the only one I know of who had ovarian cancer but it is genetically related.

Anyway, take good care of yourself and I appreciate the kind words. Elizabeth

hosslady
Posts: 12
Joined: Jun 2008

Dearest BonnieR,

I really needed to hear your response, since I can relate to all of you. I was diagnosed stage 1 in Feb. of this year, and finished my chemo in late July. I am in remission and "feeling great". Better than ever, actually. I, too, get panicky sometimes or obsess on possible recurrance. Today I am healthy. I know now to listen to my body and take it and my intuition more seriously and not keep pushing myself when I am in BAD pain. (That was my symptom, pain in my back.) I had utirine as well as ovarian. The big uterine tumor gave me back pain, which I went to get x-rayed ,finally, which saved my life.

My oncol checks my CA 125 once a month, and I get CT scans every 3 months.

Two days ago I had cataract surgery on one eye, since the chemo gave me cataracts. I can see better already. Will get the next done Oct. 30th. Just in time for Halloween!

Now I can do even MORE volunteer work, giving back to my community since I am well now. Not able to work since I am permanently disabled. I admire you who try to work full time and go thru chemo. Part time, maybe...with enough steroids! :-)

I'm rambling. You ALL are in my prayers, and as a really Good man once said,
to pharaphrase, "Peace I give to you. Not as the world gives, give I unto you. Let not your heart be troubled, neither let it be afraid. "

I love and care about you ALL , I need each one of you. You add to the net of safety in my survival. I have no one here to talk to in my town.

Yours, Hosslady (Nancy) In TEnnessee

floridajo
Posts: 485
Joined: Sep 2006

Hello and welcome. I have had 3 recurrences with this monster and each one was a bit different. The most tell tale sign is and upwards trend in your ca-125. For instance my ca-125 was 5,then 15,then 56(that took 9 months). Once it was out of the norm we started to check the ca-125 monthly. Then I began to have some small pains so a CT scan was ordered which did show a progression of disease. My Onc will not begin chemo based on my numbers. We wait until it shows up on further diagnostic testing. That is because everyones ca-125 vary so much. I know of ladies walking around with their numbers in the 900 area and no disease seen on a scan. It all depneds on how sensitive your test is. For me,we know as soon as my numbers start to rise that I have another recurrence coming on. Congrats on your good check ups. My sister was diagnosed 3 months after me with a 1c (I'm 3c)She has never had chemo and it has been over 3 years for her and all is good. I would watch for the obstructions since you have already had problems with that..so I would think for you that might be something to be taken very seriously. Good luck~~~Joanne

lindachris's picture
lindachris
Posts: 175
Joined: Aug 2007

My wife Linda is quite concerned we are staring down our second recurrence. Treatments ended last February and she had a good summer, but late in August started putting on some pounds. I think it's because she's barely able to exercise the way she used to considering her feet and hands are numb from neuropathy. But she feels like she did last year before ascites started kicking in and we had to go through all those withdrawals of fluid and finally surgery. To make matters worse, she picked up a bothersome urinary infection and is on anti-biotics. Then she threw her back out! What a mess. It's worrisome this is all part of a "bigger" problem precipitated by recurrence. Our issue hasn't been cancer spreading outside the abdomen. That's where it was the first time and where we nailed it the second. We're just praying this is coincidence and middle aged lady challenges. Any perspective is welcome.

Chris

Dreamdove's picture
Dreamdove
Posts: 175
Joined: Sep 2008

I'd probably be concerned also. Especially with the same symptoms as the first time. My doctor always asks me if I am bloated, gained weight, etc. I haven't had anything, luckily. But I did have a checkup last Tuesday. I am still waiting on the results from a test (pap or something like it, testing cells I guess) but I should hear soon about that. My Ca-125 was 7.8 which was good. But if I did have bloating, weight gain, have urinary problems, that is what I had when I had cancer Jan. 2007. I've had slight bleeding (which I had then in Jan. 2007), that's why I had this test done. So I can understand your concerns. Make sure your wife goes to all her checkups, that's all you can do. Discuss all this with the doctor, or at least call on the phone.

saundra's picture
saundra
Posts: 1390
Joined: Mar 2007

I'm waiting to see. Good to meet you and welcome to this band of sisters. Saundra

lindachris's picture
lindachris
Posts: 175
Joined: Aug 2007

Yes, Linda has an appointment this Friday, regularly scheduled. I'm particularly concerned about the back pain she's been having. But we'll see. I hate to say it but even the great oncologist she has does not take as diligent and aggressive an approach as I would like to see. Last time around he insisted it might not be cancer. Well, a couple of months later...

And I'm upset that ovarian is still a mist in the woods when it comes to diagnostics. Seems like they could do better. But it's tough.

barb_074
Posts: 1
Joined: Oct 2008

I have been cancer free for 34 yrs. thank god and the fact that I had to have a C-section. MY baby saved my life..
I would like to see more research on this kind of cancer for it is so hard to detect.
I was anxouse when I found out I had it. Any time I had a bruise or a lump that didnt heal when I through it should I would run to the doctor. He finially told me I was one of the lucky ones it was found early enought to do something about it.
So you being anxiouse is probably the normal at this stage of the game.

Dreamdove's picture
Dreamdove
Posts: 175
Joined: Sep 2008

nancy707, I will probably always have the nagging doubts. I am also trying to enjoy life. I'm meeting new men, taking trips, enjoying my kids, my cats, etc. I'd do more if I had the financial resources! But at least I'm trying to enjoy what I have. Glad to hear you are in remission, so am I. There are so many people worse off.

saundra's picture
saundra
Posts: 1390
Joined: Mar 2007

I'm stage IV, diag. 3/2007 and have been on chemo since. My CA 125 has just gone up to 50 after being under 10 for a year. I will have CT scan tomorrow. Last two have been clear. A CT scan will not pick up anything smaller than 1 cm and reads fluid filled sacs as tumors so there are drawbacks. I have not had a PET as Medicare doesn't approve maybe???

Susan523's picture
Susan523
Posts: 235
Joined: Oct 2007

Hello ladies,

Regarding the PET Scan... I have an excellent Gyn Oncologist
who did an internship at Mayo Clinic, and also taught at
both UCLA & UC San Francisco. He told me that the PET
Scan is not effective in finding cancer cells, and that
it would be a 'waste of money', so I am confused a little
when I read that some of you other ladies have had them.

I am going to ask him again for one when I see him the
end of this month. I have had some bloating & diarrhea;
so I took it upon myself to have a CA done last week.
Well, it went from 4.3 up to 9.0 I'm not happy about
that, or the bloating & diarrhea, and very nervous that I
may have a recurrence. This is my 1st 3-month stretch
between appointments. I finished IP Chemo/Cisplatin in
April, and in May my CA was 3.5 Then in July it was 4.3
(The IP Chemo was my 2nd round of chemo. I was only in
remission from the TaxolCarbo for about 7 months).

My next CA will be the last week of this month; right before
I see him. I hope it goes down, or stays the same... and
I'm wondering if the flu vaccine or Hepatitis A vaccines I
had the week before my CA could have effected the results (?)

This will be a long 3 weeks to wait!

Love,
~Susan xoxo

Dreamdove's picture
Dreamdove
Posts: 175
Joined: Sep 2008

Susan, I'd be concerned about the symptoms, too, but not the slight changes in the CA-125. I finished chemo May 2007 and get 3-month checkups. My CA-125 is always slightly different, no big concern. One time it could be 8, another time 5 or 6. Last week it was 7.8. I was told there is always a number there, as long as it is under 35. It is not a stable figure and never will be.

Susan523's picture
Susan523
Posts: 235
Joined: Oct 2007

Thank you for your reply; I really feel better
knowing that somebody has had their CA fluctuate
like that and remain in remission. My Dr. did
say not to worry if it goes up a little or changes.

kris43
Posts: 277
Joined: Sep 2007

Hi Susan - I can certainly remember when my number went from 6.9 to 9.7 I was freaking out. My oncologist said that my number was probably lower then hers and she'd never had cancer. You just always want it to stay at the lowest number. Sometimes I wish I didn't care so much.

Take care and let us know how you are doing.

Kris

lindachris's picture
lindachris
Posts: 175
Joined: Aug 2007

Thanks to everyone on this thread for sharing their experience. I did put in a call to our oncologist's nurse with whom we have a good working relationship. She's been there for us through what were a lot of ups and downs last year. She also knows it pays to be diligent considering we went two months with rising CA-125s but the fluid extracted from ascites showed no cancer cells! at that time.

Finally last October the doctor went in after Linda had 6 liters of fluid drawn off, and found a small "frosting" of cancer down low. We hit it with chemo and hope that is still holding out.

The combo of weight gain, urinary infection and some back pain spooked me/ us. I'm not taking anything for granted.

But again, thanks for filling me in on how things proceed for all of you.

cc

mhouse
Posts: 2
Joined: Dec 2008

I can certainly relate. I was diagnosed in October, had total hysterectomy and the pathology reported indicated that the cells were "p.o.'d." I asked if that meant they were angry, and Dr. just said "that's the only way I know to describe them." So, they want me to have 3 rad treatments internally and I am so scared. It just seems so embarrassing the way they do it. However, I just wanted to encourage somebody today and say that living with the anxiety of recurrence is something we will have to learn to live with and pray a lot, which I will do for you. May the Lord be with all of us. Mary H

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