Opinions please

stella65

Hi all, I have been lurking around for a while now and posted a few times, I have been amazed and humbled by so many on here, such strength and determination and such love and care for others.

The reason I am asking for peoples opinions is this........ My lovely mum has recently finished chemo and had good results from scan and CA125 is 13, she had a big op prior to chemo, complicated as things were stuck where they shouldn't be stuck! Lots of moving around of her bowel and a tumour removed, unfortunately she has PPC as well, my query is this.... At her last appt to see doc she was told she would have another CA125 but no scan in 3 months, we all feel a little uneasy as prior to her op she had a biopsy which showed nothing, she had CA125 which was only 30 and the scan showed nothing, it was only when they went in that they saw the cancer, how can we be reassured now by good CA125 results when they were never high in the first place? Has this happened to anyone else? I feel there is so much I don't understand about all of this

Thank you S X

LaundryQueen

My opinion
Stella: I am so sorry your mum had to cause you to join us. I think you have to find a way to deal with your anxiety. Of course you want reassurance but it is unrealistic to expect your mum to go thru another surgery at this time. There is no good way to monitor this disease. It really sucks!

I was diagnosed with stage 3c OVCA last summer & am finished with chemo now. When you survive OVCA, you have to learn how to WAIT without driving yourself crazy worrying about "what if."

I monitor myself for ascites which would tell me I was in trouble again. There's weird bladder symptoms that go with ascites (hard to describe).

Help your mum gain her strength back by encouraging her to get exercise. And try to keep your anxiety away from your mom--unless she has a lot of pain or a lot of weird belly noises (signs of bowel obstruction)--then get her to hospital.

Best wishes to all of you.

LQ

stella65

LaundryQueen said:

My opinion
Stella: I am so sorry your mum had to cause you to join us. I think you have to find a way to deal with your anxiety. Of course you want reassurance but it is unrealistic to expect your mum to go thru another surgery at this time. There is no good way to monitor this disease. It really sucks!

I was diagnosed with stage 3c OVCA last summer & am finished with chemo now. When you survive OVCA, you have to learn how to WAIT without driving yourself crazy worrying about "what if."

I monitor myself for ascites which would tell me I was in trouble again. There's weird bladder symptoms that go with ascites (hard to describe).

Help your mum gain her strength back by encouraging her to get exercise. And try to keep your anxiety away from your mom--unless she has a lot of pain or a lot of weird belly noises (signs of bowel obstruction)--then get her to hospital.

Best wishes to all of you.

LQ

Misunderstood
I am sorry I have obviously not expressed myself very well, there is no way I am suggesting that I think mum needs to be opened up again to see what is going on! Mum is very active, she walks every day with her dog and mum and dad also have ponies to look after, she is doing really well after chemo, she was very unwell when she had it so they stopped at 5 instead of 6 but now she is doing great, you are right about not wondering " what if" and I am not stressing out around mum but I want my mum around for a long time yet ( it is the PPC that concerns me most )and so want everything done that can be done, I just wanted some other peoples experiences really.

Thank you for your best wishes X

EvelynM

stella65 said:

Misunderstood
I am sorry I have obviously not expressed myself very well, there is no way I am suggesting that I think mum needs to be opened up again to see what is going on! Mum is very active, she walks every day with her dog and mum and dad also have ponies to look after, she is doing really well after chemo, she was very unwell when she had it so they stopped at 5 instead of 6 but now she is doing great, you are right about not wondering " what if" and I am not stressing out around mum but I want my mum around for a long time yet ( it is the PPC that concerns me most )and so want everything done that can be done, I just wanted some other peoples experiences really.

Thank you for your best wishes X

Hi Stella. I am fairly new
Hi Stella. I am fairly new here too. My mum is also suffering this awful disease. She has just finished 6 months of chemo and we find out results of the scan tomorrow and whether they can now operate. Our anxiety is through the roof. Tomorrow can't come quick enough.

Your mum sounds a very strong lady, just like mine. As far as I know from the knowledge I have is the docs won't do further scans unless there are physical symptoms to suggest progression of the disease. I want my mum to get to the same stage but can totally understand your concern as you and your mum will feel you are almost "waiting" on symptoms re-emerging.

I know that wasn't much use but just to let you know I'm thinking of you and your mum's story gives me some hope for my mum's recovery too.

Evelyn x

stella65

EvelynM said:

Hi Stella. I am fairly new
Hi Stella. I am fairly new here too. My mum is also suffering this awful disease. She has just finished 6 months of chemo and we find out results of the scan tomorrow and whether they can now operate. Our anxiety is through the roof. Tomorrow can't come quick enough.

Your mum sounds a very strong lady, just like mine. As far as I know from the knowledge I have is the docs won't do further scans unless there are physical symptoms to suggest progression of the disease. I want my mum to get to the same stage but can totally understand your concern as you and your mum will feel you are almost "waiting" on symptoms re-emerging.

I know that wasn't much use but just to let you know I'm thinking of you and your mum's story gives me some hope for my mum's recovery too.

Evelyn x

Hi Evelyn
Well not really a place you would choose to be meeting people but a big Hi to you and your mum, I will be thinking of you tomorrow and hoping for the go ahead for surgery.... Huge hugs for you both X

LaundryQueen

EvelynM said:

Hi Stella. I am fairly new
Hi Stella. I am fairly new here too. My mum is also suffering this awful disease. She has just finished 6 months of chemo and we find out results of the scan tomorrow and whether they can now operate. Our anxiety is through the roof. Tomorrow can't come quick enough.

Your mum sounds a very strong lady, just like mine. As far as I know from the knowledge I have is the docs won't do further scans unless there are physical symptoms to suggest progression of the disease. I want my mum to get to the same stage but can totally understand your concern as you and your mum will feel you are almost "waiting" on symptoms re-emerging.

I know that wasn't much use but just to let you know I'm thinking of you and your mum's story gives me some hope for my mum's recovery too.

Evelyn x

PPC
Stella: don't believe what the Internet says about PPC being "incurable." Maybe you will get a reply from Tina Brown who has PPC & knows a long-term survivor.

I also had only 5 infusions of carboplatin. We all hope to live long enough until the magic cocktail is discovered to cure all of us.

I see now--were there no big tumors to begin with? Was there ascites? I would say if she seems to be free of ascites, you can relax.

(((hugs)))

LQ

stella65

LaundryQueen said:

PPC
Stella: don't believe what the Internet says about PPC being "incurable." Maybe you will get a reply from Tina Brown who has PPC & knows a long-term survivor.

I also had only 5 infusions of carboplatin. We all hope to live long enough until the magic cocktail is discovered to cure all of us.

I see now--were there no big tumors to begin with? Was there ascites? I would say if she seems to be free of ascites, you can relax.

(((hugs)))

LQ

Thanks LQ
Thanks LQ, I have followed Tinas posts, she seems like a great lady and hope to get a reply from her. Ascites has never been mentioned by the docs, mum was bloated and this went down with chemo so is that what it would have been? she had a tumor on an ovary and we have only just found out about the one on her bowel!! We reaaly seem to have to push the docs for any info and some of them are quite doom and gloom about the PPC so it will be good to hear from Tina........ Hellllllooooo, Tina, are you there? X

LaundryQueen

stella65 said:

Thanks LQ
Thanks LQ, I have followed Tinas posts, she seems like a great lady and hope to get a reply from her. Ascites has never been mentioned by the docs, mum was bloated and this went down with chemo so is that what it would have been? she had a tumor on an ovary and we have only just found out about the one on her bowel!! We reaaly seem to have to push the docs for any info and some of them are quite doom and gloom about the PPC so it will be good to hear from Tina........ Hellllllooooo, Tina, are you there? X

Ascites / bloating
Stella: Yes, that bloating is usually from ascites (fluid collected in the belly). If it went away with chemo, then there is a good chance that it would return if the cancer was active again...but I am not an oncologist--ask the oncologist for what signs to look for since you want to be alert to any early warning signs.

I was monitoring my weight for several months to see if I had a return of ascites then I gained weight overall (not just in my belly but in general)--hahahaha! Anyway, have your mom be alert to the bloating...it would be consistent not just related to a meal.

Have you been to the "Rare Cancers" discussion board? Some of the PPC survivors are on there.

Keep us posted now and then. We may be a small group compared to some of the other groups; however, we still care about each other very much.

LQ

Hissy_Fitz

Stella, welcome to the
Stella, welcome to the board, if we haven't said that already.

The CA125 may not be a good marker for your mom, since hers was never elevated. All the more reason to watch for symptoms, such as an increase in her waistline, constipation, or urinary urgency. Frequent scans might not be any use, since they don't pick up very small areas of cancer and OC in particular often presents like little specks of black pepper - nothing that would show up on a CT scan.

Carlene

Tina Brown

Hello Stella
Hello Stella it is nice to chat to you but I am sorry to hear about your mum. I hope I am able to help reassure you. I am kind of the opposite to your mum. My CA125 tends to be on the high side but I don't have symptoms and I feel well. Its strange isn't it.

PPC is a strange cancer because there are no tumours to cut out. The only thing my doctors can go on is:

1. My health and how well I am feeling
2. My symptoms
3. Lastly my CA125.

Unfortunately PPC won't go away and I am resigned that I will always have it. So my aim is to enjoy being chemo free whenever I can. My doctors have decided to go on how I am feeling and whether or not I have symptoms - which in my case is fluid around my lungs. I have CT scans which give my doctor an idea of what is going on, but they much prefer to listen to how I am feeling as they know that one day it will rear its ugly head again and when that happens I will become unwell. As for the CA125 - it is not always a good indicator.

You can ask me anything and I am very happy to answer you. I do have a friend with PPC who is 4 years in remission andno symtoms.

Must go now but please message me with anything. Love Tina xxxxxxx