Have cancer of Omentum, in remission for 18mont... - My Ovacome

My Ovacome

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Have cancer of Omentum, in remission for 18months. told will be back soon by specialist.anyone else been told this or should i ignor it??

Marianna profile image
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Marianna profile image
Marianna
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26 Replies
MargaretJ profile image
MargaretJ

I also had cancer in the omentum as well as on the ovaries. I was told from the beginning that it was treatable but not curable. I responded well to carboplatin and taxol but when another tumour appeared after 10 months I became allergic to carboplatin. Cis platin was not effective so i am having another op next month. I knew that it would be back but in the meantime I am getting on with enjoying life.

harley profile image
harley

Hi,

Last year I responded well to carbo and taxol for what was eventually diagnosd as Primary Peritoneal Cancer, it came back and likewise I have developed an allergy to carbo, waiting to hear what the alternative treatment is. Reading between the lines of what I was told last year, i should have expected it to come back, but they really dont know for sure, everyone is an individual and staying positive is the best thing. Aim to be the one who bucks the trend., more research needs done into preventing it coming back.

Hi Marianna,

'Remission' is a strange term. It should mean that there is no discernable disease - but there is always the sub-text that there might be non-discernable disease and that might grow one day. We have had a type of cancer that often does come back statistically. However, it seems that you can enhance your chances of keepng it away with diet, lifestyle and stress control, and it makes sense to suppose that a strong immune system will defend against recurrence better than a weakened one.

That is emphatically NOT to say that, if it returns it is your fault. We cannot control some things that might have caused the cancer in the first place - genetic and environmental factors, for instance- and we will all get compromised immune systems at some stage despite the carefulest of regimes. It is also not likely that you can remain positive about it continually. The important thing is to express and recognise your difficulties and vulnerabilities. Hopefully with care and examination and changes to things that obviously put you at risk, you will find a way to stop any residual cancer taking hold - and if it does, give your body the best chance to contain it. They might not be the majority, but there are many, many women who have had ov. ca. without recurrence. As Harley said - aim to buck the trend - I certainly do!

Very best wishes,

Isadora.

Sarah23 profile image
Sarah23

Hi everyone,

I was interested to know how much caner you both had on the omentum? did your cancer spread? what stage were you dignosed at? were your operations successfull? I also had a 2 cm tumour on my omentum it had grown from my left ovary and grown across just in the pelvic area, mine was a stage 3c because of the one on the omentom, it is the first thing I was told it is not cureable just treatable and that it can come back at any time and at any stage 1c to 4 everyone is different with their outcome, but I here if you have succesfull surgery that is very important to your overall survival, and all the chemo has to do is get rid of the risiduals, the larger the tumour that is left the harder the chemo has to work, and if you have had a lot on the omentum that can be quite tricky to remove, they say tumours start to grow there within 20 minutes once it has come away from the ovaries that is way so many women are stage 3c my the time they are dignosed.

all the best Sarah P.

in reply to Sarah23

You all seem to have had so much more info than I had after my op. All I found out was that because of the residue in the wash it made it stage 3C. Even now my oncologists don't give out more info than they have to. It is hard work finding out, but I know some people prefer not to know the details, so I presume that is why. My nurses are more forthcoming if I ask them something, but don't always know the answers!

Marianna profile image
Marianna in reply to Sarah23

hi Sarah. I have never been told how much i had in the omentum. They just found it in alot of place and i was terminal. I have an unknown primary, which they think was an ovarian c. the carboplatin worked very very well. and was told that they could find no trace on the last scan 20 months ago.So it is sleeping now. Have never been offered any operation here in uk . Did hope that they might take the omentum away altogether to help. But just have to wait. My Oncologist does not take periodic tests either just asks how i feel. I expect that is good cos you dont worry about the results. but makes you a bit nervy when you dont feel good. Thanks for the .info though Sarah. This site is amazing for information and i feel all the woman on here are amazing.

Hi Marianna,

As one who keeps getting it back and bucking the trend, (now on 5th line!), all you can do is stay postive, and look after yourself as best you can. Try to follow a sensible diet Dr David Servan - anticancer diet is a good one to start), and use all the support networks you find. It may not come back, and nobody, not even the doctor can say it definately will, but at least if it does you will be prepared - nobody told me mine might be back, and I was devasted when it did after 12 months.

Good luck (and keep positive)

Viv

pixie profile image
pixie

I think that even though you had 3c, and that your oncolgist is waiting for it to come back, none of the docs can say when, so to tell you it will come back "soon" is pretty negative. Maybe it will, maybe it won't. Might be next week, might be next year. But you just have to get on with your life and be positive about your every healthy day. So ignore him! You are unique and so is your cancer. Eat well, be active and positive.

All the best

Gael x

wendydee profile image
wendydee

Mine was borderline OC in both ovaries and the omentum, but, like Viv, I was never told how big the tumours were. I know borderline is a low staging, classed as 1C, but that all happened 9 years ago, and, so far so good! I try not to waste time worrying about "what if". As Gael says, maybe it will, maybe it won't. In the meantime, follow all the sensible advice on here (there was a good thread a while ago about staying positive, you could look that up, and one on sensible eating --there's loads of advice in the back editions!) and enjoy the things that make you happy. All the best,

Love Wendy xx

TinaWright profile image
TinaWright

I had my omentrum removed during 1st op, I can`t help but wonder why you ladies can`t have yours removed as well?

Marianna profile image
Marianna in reply to TinaWright

I have been asking that but never given a reasonable answer. i know they do it in states but think they are reticent to do it in uk. I thought that it would be a sensible option once the OC was diminished. but was told it was not a good option. so abit confused about it all

LadyBlueTC profile image
LadyBlueTC in reply to TinaWright

dr found a microscopic cancer in the omentum, did 7 other biopsys and nothing. I had a complete hys in 1996 so I had nothing in there. had 6 months of carb and taxitol and so far the blood work and ct scan is fine.

before surgery i had had no symptoms at all. i have diverticulitis and did have a pain in the upper left side 1 morning but it was from something i had eaten the day before. will have blood work every 3 months for 2 yrs just to make sure. Its been a year since my surgery and 6 months since the chemo. I still get that nasty metalic taste in my mouth every so often but all the other symptoms are gone.

Blessings to all

Peggy USA

hereshoping profile image
hereshoping

Hi Marianna, after my surgery in which they took away my Omentum, the pathology report stated that the bulk of my tumour was in the Omentum. I had clear lymph nodes, and bowel from the samples they took but was in my left ovary, high grade, and that is when they diagnosed me with PPC. Last August when I had my first scan I had peritoneal seeding under my diaphragm and a restrosternal node. My Oncology Doctor told me when I had my first visit with her before chemo that I was a Stage III to IV because of the restrosternal node and said that her hopes for Stage III patients were to get them in remission or cancer free after 5 years, but Stage IV was harder. I don't consider myself in remission yet. I had wonderful results with 4 rounds of chemo then surgery, then two more rounds and My CA125 which was 1800 on diagnosis went down to 29 after treatment. Unfortunately it has been steadily climbing since June which was 173, Oct a jump to 607 and last week 709. I have had two scans, June and last week because of the jumps but both have shown no new markers which is really good news. I don't worry about my CA125s rising as until something happens to make me start feeling unwell they wouldn't do anything so I try to get on with my life. My Oncologist did say there is a strong possibility it will come back and I am realistic about this, but when that might be is anyones guess so you just tuck it away in a corner and move on. I could get hit by a bus tomorrow or drop of a heart attack so who knows whats in store for us. At least I am under the best care and unlike when I was first diagnosed and the time it took to get everything underway there is no mucking around this time. I wish you well and don't stop laughing. Chris.

Briggsgma profile image
Briggsgma

Margaret, I was also told that metastatic breast cancer to the omentum was treatable but not curable. I was dx with stage 4 to the omentum. No surgery was recommended, I am getting chemo and taking lots of vitamins and watching my diet. I have had 3 treatments and count is headed up instead of down so now on a new chemo drug. I have faith in God that things will start improving. Just have to find the right mix. God Bless

Joaniegirl profile image
Joaniegirl

Yes, my cancer blood markers went up again after nine months. Back on chemo.

Srosol profile image
Srosol

Hi all - I am having terrible pain and pressure from cancer in Omentum. Get fluids drained every 2-3 weeks. How do you manage symptoms and what diet tips do you follow? Thanks

Hi Everyone, My mom, 80 years old, was diagnosed with carcinosarcoma. They found it in the omentum as well. Has anyone had taxol and carboplatin at this age? Has it worked to subside this cancer?

Marianna profile image
Marianna in reply to

I only had Carboplatin. Nothing else offered at the time. Was supposed to be palliative care only. But 7 years on and still OK. I thank God every day.

bertiedog profile image
bertiedog

I was diagnosed with breast cancer in April 1995. Had lumpectomy, radiotherapy and "mild" (tablets) chemotherapy then Tamoxifen for 5 years. I then had no further trouble. In March 2015 I was ill, and to cut a long story short, a CT scan showed a blocked bowel, caused by secondary breast cancer. I was dumbfounded. I had to have an ileostomy, which I still have. I was told I couldn't be cured, but could be treated. Had chemotherapy, I think it was FAP or something like that. I also had a pulmonary embolism, possibly caused by the cancer. I am now on Warfarin, indefinitely, and take Anastrozole. Later it was discovered that I had multiple metastases in my bones, but these had probably been there for some time, they just hadn't been looking for cancer when I was taken ill. I have denosumab injections every four weeks. All my organs have been clear and CT scans have shown no progressive disease although I am aware this can change at any time. I had my latest one last week and haven't had the results yet. I'm just crossing my fingers. I don't get symptoms from my bones and feel well so live each day as it comes. I have not come across anyone else with cancer in the peritoneum and omentum and no-one with an ileostomy caused by breast cancer. I see from this site that others have been affected in the omentum.

Bertiedog

marsha01 profile image
marsha01

Marianna Thank you for the positive news here. I was reading on the Internet about omentum tumors and got quite worried. I had uterine cancer that in all the tests seemed localized but the deep pathology showed a micro tumor in the omentum. Just finished six rounds of chemo and starting radiation soon. Also taking my vitamins, on an anti-angiogenic diet and keeping active. Your positive results are an inspiration!

Welcome to the site and a little tip for the future. Before replying to a post, check how long ago it was written(Inside the box top right) Most of this conversation was 7 years ago. Regrettably some of the writers are no longer with us.

nursca profile image
nursca in reply to

CT showed standing and too many nodules to count in the omentum. I am a 48 year old female. I have bloating, obstipation, and abdominal distention for 5 months. There is no sign of a primary tumor in other organs on CT. I will have laparoscopy with biopsy and pathology testing tomorrow. Looking for support, information and treatment options. I refuse to let this be the end and I am ready for fight!

in reply to nursca

Best of luck for tomorrow. Let us know how you get on.

nursca profile image
nursca in reply to

Laparoscopy and biopsy show omental cancer, cell type is low grade serous papillary carcinoma. I am scheduled for larger debulking surgery on 11/6. Hoping to get the majority of the cancer out. Not sure what we will do with microscopic cells left behind as I am told this cancer does not usually respond the chemo. I have to hold on that I will be in the 2-4% that responds. My little one has just turned 10.

Marianna profile image
Marianna

Hi to all. This was my post from 7 years ago. Still here and still living large. Remember there is always hope. Be determined and use any info you get to your benefit. I am so grateful to be here watching my grandchildren grow up.

lorraine71-Australia profile image
lorraine71-Australia in reply to Marianna

Hi Marianna, I just notice your reply that you are still here how wonderful ,maybe you can write a post and let all know how you are going ,we love positive story's..I hope it continues take care Lorraine xx

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