Unusual?

stella65
stella65 Member Posts: 152
in Peritoneal Cancer #1
I have posted before about mums PPC, just thought I would update and get some more opinions, great to have a PPC board!........ I was struggling with the fact that Mum has so little to go on re her symptoms and CA 125, her CA125 is never high and she had no symptoms except a pain in her stomach which has since been helped with antacids!! I thought she had Ascites and was advised by another member here that that was a good indicator to go on in the future, Mum has told me today that the swelling that I thought she had before her op was actually post op swelling, so it seems she didn't have ascites, I hope this makes sense? Bottom line is the only symptom she ever had that could be related to the cancer is tiredness, she has constipation but has had that for many years, Mum has her next appt in August for her 3 month check up and CA125 results all we can go on really is how she feels I suppose? I just find it odd as most of you ladies seem to have more symptoms or can go more on your CA125 results

Thanks for listening X

Comments

  • abrub
    abrub Member Posts: 2,174 Member
    #2
    Has your mum had a CEA?
    Sometimes Peritoneal Cancer is of colorectal origin, in which case, it might affect her CEA. Ask if they can check that as well. Also, if she hasn't had a colonoscopy, it might be a good idea for her to have one.

    I had peritoneal mets from appendix cancer, without ascites. However, the cancer was seeded throughout my peritoneum.

    Best wishes,
    Alice
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #3
    Hi Stella65
    My own PPC has very little symptoms and while we may find it frustrating I think we should celebrate that. I take it to means that our cancer is fairly stable. I was never really ill when I was diagnosed.

    I had pleural effusion that pressed onto my diaphram which in turn put pressure on my abdomen. This pressure made me think I had ascites but like your mum I didn't.

    My CA125 was high which I guess rang alarm bells for my oncologist, but I wasn't symptomatic the second they put me back on chemo. Now, my oncologist will be monitoring my CA125 but will not put me back on chemo until I feel ill or I get the fluid back around my lungs.

    So I would celebrate the fact that your mum is without symptoms as this is a good indicator of a stable disease as my oncologist told me.

    Tina xx
  • stella65
    stella65 Member Posts: 152
    #4
    Tina Brown said:

    Hi Stella65
    My own PPC has very little symptoms and while we may find it frustrating I think we should celebrate that. I take it to means that our cancer is fairly stable. I was never really ill when I was diagnosed.

    I had pleural effusion that pressed onto my diaphram which in turn put pressure on my abdomen. This pressure made me think I had ascites but like your mum I didn't.

    My CA125 was high which I guess rang alarm bells for my oncologist, but I wasn't symptomatic the second they put me back on chemo. Now, my oncologist will be monitoring my CA125 but will not put me back on chemo until I feel ill or I get the fluid back around my lungs.

    So I would celebrate the fact that your mum is without symptoms as this is a good indicator of a stable disease as my oncologist told me.

    Tina xx

    Thank you
    Thanks Alice and Tina... Alice I don't know if mum has had CEA I will ask her... Tina, you are right and I do see mums lack of symptoms as a very good thing, great for her as she can live her life, it is a glorious day here today and we went to a local lake with the dogs and then had an icecream, really lovely to spend time with mum like that and see her looking well, it is just going for the 3 month check and knowing that even if mums PPC had spread we probably wouldn't know due to lack of symptoms... Yes I know I am sounding like an ungrateful human being but this bloody cancer shouldn't be attacking my mum!! Tina where are you from, I gather you are in England?
  • lulu1010
    lulu1010 Member Posts: 367
    #5
    symptoms
    My CT scans and ultrasound, etc. were negative. The highest my CA 125 got was 149 so I am sort of in the same boat. I did have severe constipation (almost obstructed) and pain in the abdomen. They are watching my bloodwork and CT scans but the best thing we can do is just monitor how I feel. I know it is discouraging to not have an exact test in this day and age but it seems that is the best that can be done. If I am feeling good I am thankful and just try to make the best of the day. Hope you mum is feeling better as well!
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #6
    stella65 said:

    Thank you
    Thanks Alice and Tina... Alice I don't know if mum has had CEA I will ask her... Tina, you are right and I do see mums lack of symptoms as a very good thing, great for her as she can live her life, it is a glorious day here today and we went to a local lake with the dogs and then had an icecream, really lovely to spend time with mum like that and see her looking well, it is just going for the 3 month check and knowing that even if mums PPC had spread we probably wouldn't know due to lack of symptoms... Yes I know I am sounding like an ungrateful human being but this bloody cancer shouldn't be attacking my mum!! Tina where are you from, I gather you are in England?

    Hello Stella
    Yes you are right I am from England, from Nottinghamshire. I actually think that if your mum's cancer spreads then she will get symptoms so you will know. Plus the doctors have ways of finding out whether the cancer has spread or not and can often tell by looking at your mum amd asking her questions.

    Trust the doctors. Try not to live in fear of the check ups and enjoy the time inbetween. I know it is hard as I found it hard last year, but enjoy every minutes you can.

    Tina xx
  • gailtrap
    gailtrap Member Posts: 3
    #7
    lulu1010 said:

    symptoms
    My CT scans and ultrasound, etc. were negative. The highest my CA 125 got was 149 so I am sort of in the same boat. I did have severe constipation (almost obstructed) and pain in the abdomen. They are watching my bloodwork and CT scans but the best thing we can do is just monitor how I feel. I know it is discouraging to not have an exact test in this day and age but it seems that is the best that can be done. If I am feeling good I am thankful and just try to make the best of the day. Hope you mum is feeling better as well!

    symptoms
    Sounds as though we had similar symptoms--severe constipation and pain in the abdomen, plus feeling lumps throughout the abdominal cavity. Have just had my second chemo treatment followed by the neulasta shot. This time I had major pain from the shot, but so far, no real problem with the chemo. I think the next rec may be debulking surgery which I have major reservations about. Any knowledge or experience with that surgery?
  • birdwellv
    birdwellv Member Posts: 13
    #8
    gailtrap said:

    symptoms
    Sounds as though we had similar symptoms--severe constipation and pain in the abdomen, plus feeling lumps throughout the abdominal cavity. Have just had my second chemo treatment followed by the neulasta shot. This time I had major pain from the shot, but so far, no real problem with the chemo. I think the next rec may be debulking surgery which I have major reservations about. Any knowledge or experience with that surgery?

    surgery
    gail,

    What chemo are you on at this time, I have had carbo/taxol and then a 6 month remission and started back on doxil in Jan of this year.

    had surgery in Oct 2009 and they removed my ovaries, 5 tumors, 2 lymph nodes, part of the omentum, 12 inches of the small intestine, and I think I would do it again if given the choice.

    I think I had less cancer left to deal with taking chemo and at least had a 6 month remission.

    Know with this type of cancer it will be ongoing with some type of maintence but am just glad to be alive.

    Vicki
  • stella65
    stella65 Member Posts: 152
    #9
    Tina Brown said:

    Hello Stella
    Yes you are right I am from England, from Nottinghamshire. I actually think that if your mum's cancer spreads then she will get symptoms so you will know. Plus the doctors have ways of finding out whether the cancer has spread or not and can often tell by looking at your mum amd asking her questions.

    Trust the doctors. Try not to live in fear of the check ups and enjoy the time inbetween. I know it is hard as I found it hard last year, but enjoy every minutes you can.

    Tina xx

    Thanks Tina
    We are down south in the New forest... Thank you for your reassuring words it really helps to talk with people going through the same thing X
  • stella65
    stella65 Member Posts: 152
    #10
    lulu1010 said:

    symptoms
    My CT scans and ultrasound, etc. were negative. The highest my CA 125 got was 149 so I am sort of in the same boat. I did have severe constipation (almost obstructed) and pain in the abdomen. They are watching my bloodwork and CT scans but the best thing we can do is just monitor how I feel. I know it is discouraging to not have an exact test in this day and age but it seems that is the best that can be done. If I am feeling good I am thankful and just try to make the best of the day. Hope you mum is feeling better as well!

    Thanks Lulu
    Mums CA125 was only ever 30! and she has had consipation for years so thats no help as an indicator, You are right, I think it is the frustration of no better tests I just need some reassurance sometimes and this site is great for that, so thank you so much X

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