CAN I HAVE A HUG?

mopar
mopar Member Posts: 1,972 Member
edited March 2014 in Ovarian Cancer #1
After 5 cancer-free years there is now a possibility I will face it again. A lymphocele which has been present for about a year and HAS NOT changed in size is now recommended by my oncologist to be removed and tested. His concern is that my CA125 has steadily been rising and is now at 26.5. The lymphocele is located on the bowel, so it is not likely that it can be aspirated (too much risk in punctering the bowel and putting me at risk). Therefore, he recommends a full laparotomy (vertical incision this time) and chemo if it proves to be an issue.

My appointment was at 4pm and I did not return home until 1am. Yes, that's AM. This is a typical appointment for me with my oncologist. I'll explain some other time. So, right now I am tired, concerned, and just looking for some experience out there in this area. My questions . . .

1. I've heard of concerns in opening up a person and exposing their organs to oxygen, thereby possibly creating a worse situation (although I know this doesn't belong there and needs to come out).

2. Typically, since it has been 5 years does this mean if it is cancer my chances are better or not so good to get through this a second time around?

3. My originaly was stage 1C, 6 rounds of carbo/taxol, full hysterectomy with omentum and lymph node removal. Obviously, this time they are only (hopefully) removing the lymphocele. My recovery time will be the same (6 weeks).

So, I guess I'm just looking for some thoughts on this. My husband is by my side, helping me to get ready if need be to repeat this process again. I will continue my health/exercise/nutrition regimine, maybe even step it up a bit. So, I am not concerned about that. Just need to get some medical background on this situation or similar.

Thanks to all who respond. As always, my prayers are with all of you. I have been wearing my 'teal ribbon' this month not just for me, but for ALL of us. I'll be patiently awaiting some replies.

Have a wonderful, blessed day!

Monika

Comments

  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #2
    Dear Monika, First off consider yourself ((((HUGGED)))). I know it is easy for me to say please don't worry about the oxygen part of it, but please don't. If this was the case they would not be doing so many second look surgeries.

    Second, I don't know if you remember but I have dealt with a lymphocele since right after my first surgery and have talked to several women that have and have yet found anyone that had cancerous outcomes when finally removed. Including myself.

    5 years cancer free is awesome and yes it is a very very strong indicator that even IF (note the big if) they find more cancer your original treatment shows you responded to chemo great and would most likely again. IF needed! :-)

    I am sure your Dr just wants to really take a look see to make sure they are not missing anything. Have you ever had a petscan? They show where even suspicious activity is and doesn't have to wait for a tumor to form or grow. You may want to ask your Dr about it. That is how we found the cancer activity in chest wall and neck nodes.

    You will be sore after the surgery but not quite as bad as the first surgery when they were removing so much. I know it is easy to worry and cancer likes to stir up worry and fear in everyone. I will hold close in prayer. Let us know when you are scheduled for surgery so we can mark it on our calendars.

    Prayers adn Hugs Bonnie

    PS My sisters ca125 has gone as high as 40 without having cancer.
  • Lrh
    Lrh Member Posts: 4
    #3
    I had a lymphocele which when aspirated proved to be non-cancerous. Your doctor appointment sounds familiar as I also wait several hours to see my doctor. Your doctor wouldn't be located in Southfield, MI would he?
  • Lrh
    Lrh Member Posts: 4
    #4
    Yep. I'm sure you know you're in excellent hands. I suffered a recurrence 2-1/2 years out from my original Stage IV dx when a liver tumor was spotted via CT Scan. Dr. M did surgery to remove it then I had another 6 rounds of chemo. I have since learned that many doctors would never have done that surgery; they simply would have resumed chemo. Today I'm 24 months out of treatment; 30 months out from that surgery, longer than my first remission. While he was in there he poked around at other spots, particularly where he had to leave cancer behnind the first time because removing it would have cost me a kidney. Much to his surprise and mine, no other cancer was found. He also told me my chances were much higher this time around because he had removed all visible signs of cancer, something he wasn't able to do the first time around. I know we wait a long time to see him, but he's certainly worth it. Usually I sign in, then go to the movies and dinner, then return. By that time they've called me so I'm usually the next patient they bring back. His waiting room backs up so much because any time there's a problem in the OR, they call him. I'd rather wait while another woman on the table gets the most excellent care she possibly can. And once upon a time, I was the reason that waiting room backed up. We've recently relocated out of state and my big concern was leaving Dr. M. I've since decided that I will continue to see him. He's worth the trip and the drive. Good luck to you and God bless.
  • jamilou
    jamilou Member Posts: 200
    #5
    Monika
    I believe Bonnie said it all so....Hugs and good luck! As always you are all in my prayers.
    Jami
  • mopar
    mopar Member Posts: 1,972 Member
    #6
    Lrh said:

    I had a lymphocele which when aspirated proved to be non-cancerous. Your doctor appointment sounds familiar as I also wait several hours to see my doctor. Your doctor wouldn't be located in Southfield, MI would he?

    Yes, Lrh, Providence Cancer Center. You too?
  • mopar
    mopar Member Posts: 1,972 Member
    #7
    Lrh said:

    I had a lymphocele which when aspirated proved to be non-cancerous. Your doctor appointment sounds familiar as I also wait several hours to see my doctor. Your doctor wouldn't be located in Southfield, MI would he?

    Thank you so much also, Jami and Bonnie. Bonnie, with everything you have been through you are quite an inspiration. That's why I value your and other's input. God Bless all of you for giving me an extra dose of 'hope' today.
    Monika
    P.S. I asked if a PET scan would help and he said not as a diagnostic tool??
  • mopar
    mopar Member Posts: 1,972 Member
    #8
    Thanks to all of you for your extra dose of 'hope' today. I'm storing it up from all the prayers, my prayers, and my husband's support (children don't know yet).

    Yes, Lrh, I go to the Providence Cancer Center - you too?

    I asked about the PET scan, as I had one before and found it extremely helpful. However, my doc says 'not a sufficient diagnostic tool right now'. So I guess I'll have to respect that.

    God Bless you all for your support. I'll be in touch.

    Monika
  • mopar
    mopar Member Posts: 1,972 Member
    #9
    Lrh said:

    Yep. I'm sure you know you're in excellent hands. I suffered a recurrence 2-1/2 years out from my original Stage IV dx when a liver tumor was spotted via CT Scan. Dr. M did surgery to remove it then I had another 6 rounds of chemo. I have since learned that many doctors would never have done that surgery; they simply would have resumed chemo. Today I'm 24 months out of treatment; 30 months out from that surgery, longer than my first remission. While he was in there he poked around at other spots, particularly where he had to leave cancer behnind the first time because removing it would have cost me a kidney. Much to his surprise and mine, no other cancer was found. He also told me my chances were much higher this time around because he had removed all visible signs of cancer, something he wasn't able to do the first time around. I know we wait a long time to see him, but he's certainly worth it. Usually I sign in, then go to the movies and dinner, then return. By that time they've called me so I'm usually the next patient they bring back. His waiting room backs up so much because any time there's a problem in the OR, they call him. I'd rather wait while another woman on the table gets the most excellent care she possibly can. And once upon a time, I was the reason that waiting room backed up. We've recently relocated out of state and my big concern was leaving Dr. M. I've since decided that I will continue to see him. He's worth the trip and the drive. Good luck to you and God bless.

    I agree with you - he's worth the wait. You can always spot the 'first-timers' because they are amazed at how long it takes. But he sure takes care of his patients - takes his time with you, brings in dinner & goodies! and now there are even TV's in the exam rooms! The bottom line is I wouldn't trust going to anyone else.

    I'm so glad you are doing well. And I hope when you return for your visits here they are 'well' visits.
  • groundeffect
    groundeffect Member Posts: 639 Member
    #10
    Hugs for everyone! 26.5 doesn't seem so high for a CA125, so maybe something else is throwing it off. Mine has never gone below 10 - it seems to me I've seen women with as low as 7 or 8 on the board, so I keep hoping it doesn't mean I may have a reoccurence.

    I've been opened up twice - once for removal of fibroids with a bikini cut, and once for the hysterectomy, so now I have that "anchor" effect of the crossing incisions. You probably shouldn't worry about the surgery so much as the outcome.

    Finally, it seems to me the book I always recommend, "Gilda's Disease", addresses second line treatment. One of my support group members is now going through her third round of chemo. She was dx about 11 years ago with IIIc (I think), and is doing marvelously. She's a good influence on all of the group.

    To wrap this up, sorry to hear you're possibly looking at this uninvited guest again. Keep your spirits up, and know that we're all rooting for you!
  • mopar
    mopar Member Posts: 1,972 Member
    #11
    groundeffect said:

    Hugs for everyone! 26.5 doesn't seem so high for a CA125, so maybe something else is throwing it off. Mine has never gone below 10 - it seems to me I've seen women with as low as 7 or 8 on the board, so I keep hoping it doesn't mean I may have a reoccurence.

    I've been opened up twice - once for removal of fibroids with a bikini cut, and once for the hysterectomy, so now I have that "anchor" effect of the crossing incisions. You probably shouldn't worry about the surgery so much as the outcome.

    Finally, it seems to me the book I always recommend, "Gilda's Disease", addresses second line treatment. One of my support group members is now going through her third round of chemo. She was dx about 11 years ago with IIIc (I think), and is doing marvelously. She's a good influence on all of the group.

    To wrap this up, sorry to hear you're possibly looking at this uninvited guest again. Keep your spirits up, and know that we're all rooting for you!

    Thank you so much for your encouraging words! I agree, that the CA125 can fluctuate for a variety of reasons. My lowest every was 11 and I was elated. My norm all these years seemed to be from 17 to 19. It's been the steady rise that concerns my doc. However, I'm not a stranger to stress (as none of us are!), especially in the last 2 years (so much going on in our lives). However, since normally try to take really good care of myself (exercise, nutrition, rest, etc.), I can't help but wonder if my 'slacking off' has caused these numbers to rise. I always did notice a definite connection when I was diligent in my program.

    Again, thank you. As these replies continue to flow across the board I am more and more encouraged to just do what I need to do and let the Lord and all my supporters carry me through!

    Hugs to all.

    Monika
  • Lrh
    Lrh Member Posts: 4
    #12
    I know! I was up Friday for blood draw (and to see friends) and I couldn't believe the changes that have happened in the past six weeks. I like the tv in the room idea since we usually sit in there for over an hour! As far as your CA goes, what has your trend been? My CA doesn't have to venture far before I know trouble's brewing. It was over 900 at dx but dropped to single digits after second chemo. Two years later when it started an upward trend of 5-7-9-12 a CT scan found the liver tumor. The next CA draw was 15 so it would have continued going up. I'm glad Dr. M is so aggressive. If I'd of waited until that CA got out of the "normal" range, I know that liver tumor would have exploded everywhere. Like I said in my earlier post I thank God every day for Dr. M and I pray that you have excellent results as well.
  • mopar
    mopar Member Posts: 1,972 Member
    #13
    Lrh said:

    I know! I was up Friday for blood draw (and to see friends) and I couldn't believe the changes that have happened in the past six weeks. I like the tv in the room idea since we usually sit in there for over an hour! As far as your CA goes, what has your trend been? My CA doesn't have to venture far before I know trouble's brewing. It was over 900 at dx but dropped to single digits after second chemo. Two years later when it started an upward trend of 5-7-9-12 a CT scan found the liver tumor. The next CA draw was 15 so it would have continued going up. I'm glad Dr. M is so aggressive. If I'd of waited until that CA got out of the "normal" range, I know that liver tumor would have exploded everywhere. Like I said in my earlier post I thank God every day for Dr. M and I pray that you have excellent results as well.

    Hope your blood tests come back good. I'll be keeping in touch here on the forum when I get more info on my situation.

    Thank you again, to all of you. Have a wonderful Sunday evening.

    Monika
  • paula57
    paula57 Member Posts: 93
    #14
    I wish you the very best and a speedy recovery. How long do you have before your surgery? My CA-125 is also on the rise but they haven't found anything,yet. Our prayers will be with you! Paula

Discussion Boards