Doing well: Hi I have stage 4 peritoneal... - My Ovacome

My Ovacome

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Doing well

Ossett profile image
30 Replies

Hi I have stage 4 peritoneal diagnosed in march my doctor was red hot at picking it up went to the doctors because I had a swollen tummy on the Wednesday had a blood test on the Friday and was in hospital on Wednesday having scans biopsy diagnosed on Thursday seeing oncologist the following Monday started my chemo following Wednesday how quick was that. Anyway just finished my 3 chemo but after my 2 chemo had ct scan showing that the cancer was shrinking then had a blood test and my ca125 had come Down from 2470 to 1040 so good new this week going to see the surgeon today to see if she can operate to debulk (what a horrible word) any way will repost tomorrow after seeing her fingers crossed that she can operate as been told it's better if she can ( can't believe I'm wanting to have this done ) I'm the biggest wimp out when it comes to hospitals wish me luck.

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Ossett profile image
Ossett
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30 Replies
Caleda4 profile image
Caleda4

Great news that the chemo is working for you,& I hope that the surgeon can operate.I will be keeping my fingers crossed for you.

Love Caleda xxx

Alikay profile image
Alikay

Fingers, toes and anything else crossable all crossed for good news when you see the consultant. Xx

keeponkeepingon profile image
keeponkeepingon

Wishing you all the best for your upcoming treatment, hope that you get your surgery. x

Katmal-UK profile image
Katmal-UK

Great positive post, looking great too! I think we all believe we are the world's biggest wimp and trust me I certainly think I am but I have to say that the surgery turned out just to be fear of the unknown. Yes there is some discomfort, yes I couldn't run a marathon for a few weeks after (not that I ever have if I am totally honest) but it's nowhere near as bad as I was fearing and time moves so quickly. In and out in 4 days (radical hysterectomy etc). Home, rest, daytime TV (probably worse than the op!) back driving in 6 weeks and getting life back to my new normal. Wishing you all the very best. Kathy xx

Cropcrop profile image
Cropcrop in reply to Katmal-UK

Isn't daytime TV dire 😂

Ossett profile image
Ossett in reply to Katmal-UK

Oh I really am the biggest wimp just scared and shocked at the moment x

Katmal-UK profile image
Katmal-UK in reply to Ossett

Hi I and probably all the other ladies here can relate but I can't stress enough how it is not going to be anywhere as bad as you think. I was bawling my eyes out when they took me for my surgery, goodness knows what they thought! 4 days later I was home and wondering why I'd been so scared! xxx

Lyndy profile image
Lyndy

Good news! Don't worry about debulking...it is a big op but you will feel better once it's done and your remaining chemos will be more effective!

L xx

Ossett profile image
Ossett in reply to Lyndy

Thanks I will keep positive x

Ossett profile image
Ossett

Hi update on surgery I can have the op full hysterectomy omentum hopefully one lymph node the other one is too near my heart and what really shocked me was that I will probably end up with a permanent stoma bag did have a little cry at that because they may have to take away bowel bitter sweet new I think.

Thanks for your support it means a lot.

capetownval profile image
capetownval in reply to Ossett

I understand, I had to have an ilestomy stoma first , then a year later joyously went in for my reversal. 2 months later I knew something was wrong , and this time had a colostomy. So another stoma, I also felt very depressed, but very happy to be alive .We learn to live with it , and the stoma nurses are very supportive.

If it has to happen try to see the positive.

Good luck with every thing

Ossett profile image
Ossett in reply to capetownval

I will see the positive soon I'm sure just a bit scared and shocked thanks for replying x

capetownval profile image
capetownval in reply to Ossett

I was terrified, it's probably how we all feel

January-2016-UK profile image
January-2016-UK

Great photo. I also had to have chemo first before an operation could be considered. I remember I had to sign authorisation papers to say that I may need to have either a temporary or permanent stoma. In the event I didn't but I can remember the shock when being advised this might happen. There are ladies on here who have experience of both temporary and permanent stomas who can give you lots of information and advice regarding their experiences

Good luck with the surgery. All the best!

Ossett profile image
Ossett in reply to January-2016-UK

Let's hope that I don't have to have it, I know I will cope if I have to with one thanks for replying x

yewbarrow profile image
yewbarrow

Wishing you lots and lots of luck! Xxx

Shire62 profile image
Shire62

Good morning!

I also have an ileostomy, I was firstly admitted to hospital last August with a bowel blockage, not even knowing that I had Ovarian cancer until they opened me up !!! Subsequently found out that I had stage 3c... anyway 3 chemos, debulking surgery, another 3 chemos later , I am currently in remission, due for check up on Thursday.. it was initially detonated get used to my stoma but like anything you really do get to tolerate it.. The stoma nurses are truly amazing and so very helpful.. Keep in touch and if there's anything you need to ask feel free..

Much love ❤️

Jackie

Ossett profile image
Ossett in reply to Shire62

Thank you for the positive thoughts still in shock this morning x

Shire62 profile image
Shire62

Detonated meaning difficult!' Bloody predicted text !! Jackie xx

Mommoo65 profile image
Mommoo65

I was diagnosed PPC 3b in Sept 2015. Mine was caught during a hernia operation. Thank goodness! I did have the debulking surgery after 1 chemo treatment and doc said it was successful but a tumor was found in my Fallopian tube. So one more IV chemo and 4 IP chemo later, I am NED after 14 months post chemo. You will do fine with surgery! Take your time recovering!

Cropcrop profile image
Cropcrop

Hi Osset, I know just what you mean about wanting the surgery, I too couldn't wait to get it sorted, I'd never even had a stitch before my operation so I went for my initiation surgery big style 😬. Debulking is an awful term isn't it. What a good doctor you have, mine was the same because I too had the swollen tummy which was wrong for me and he acted really quickly and I was sorted very quickly. Unfortunately we seem to be the exception to the rule but hopefully it will improve soon for others. I hope you get your surgery soon and can finish your chemo. Keep as well as possible xx Jane

Ossett profile image
Ossett in reply to Cropcrop

Thanks I will you too just in shock x

Neona profile image
Neona

I have an awful iliostomy-it was a big shock when I woke up. At first I was very intimidated by it and was afraid to go out and my hands shook when I had to change the bag. Now I have got used to it and it does make chemo easier as there are no problems with constipation. Wishing you the best of luck with your treatment.

Ossett profile image
Ossett in reply to Neona

Just looked at internet at them wish I hadn't I know im being stupid and irrational but it just seems a big thing to come to terms with I know I will be able to cope when it comes to it, just so scared at the moment x

Neona profile image
Neona in reply to Ossett

It takes a little while to settle after surgery but then it just gets easier. Suggest asking to see a stoma nurse before surgery -I was not expecting a stoma and it was initially quite traumatic-the nurse was surprised that I had not done the pre-surgery training for a stoma. My initial problems were poorly fitting bags but the nurse came out to my house for the first few weeks and got it all sorted out. Now I am managing on my own.

antheamary profile image
antheamary

Best of luck with everything.

chrissapam profile image
chrissapam

that's the service everyone should get....well done; and try to relax for both the op and the recovery...don't do too much! C x

keeponkeepingon profile image
keeponkeepingon

I think it's pretty standard that anybody having the de bulking op will be told they may end up with the stoma, until they get in there they don't know exactly what they are faced with, I was also told it was a possibility and I had to sign for that procedure if they needed to do it,luckily for me they didn't, hope all goes well with your op xx

My wife was also diagnosed with peritoneal in Jan. 16. Quite rare. The oncologist at the Cleveland Clinic chose to debulk before chemo. She was hospitalized for 3 days. She was staged at 4 after surgery then had 2 rounds of carboplatin with taxol. She is now NED (no evidence of disease) and taking a maintenance drug called Avastin. Her only problems now are shortness of breath and weight gain. Ask your doctor about clinical trials.

MissEd profile image
MissEd

My mum is stage 4, she had 6 chemos, operation and then 2 chemos, she is NED and her ca 125 down to 13 (it was 1400 at the diagnosis. The operation was tough but worth it to get the horrible stuff out!

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