mucinous adenocarcinoma - further symptoms - My Ovacome

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mucinous adenocarcinoma - further symptoms

nessie1965 profile image
8 Replies

Hi, was wondering whether anyone diagnosed with mucinous adenocarcinoma has experienced any further symptoms after surgery, My story is that i had an ultrasound back in january which found a cyst on my left ovary and my right could not be found!! i was fast tracked for an mri by contrast which discoverd i had a mass in my right ovary off 15cm, i was then fast tracked to a consultant (within 2 days) who said that the mass had some suspicious areas and they would have to do a full hysterectomy which i had at the end of Feb by which time the mass had grown to 26cm in three weeks. Since then I have been told that it was cancerous stage 2 grade 1a with no further treatment required, but due to the nature of this rare cancer i am now waiting to see a colorectal consultant for further investigations. Recently my stomach has started to bloat again with similar symptoms that i experienced before disgnosis, stomach bloating, tiredness and no appetite. Would appreciate any help or advice. thanks

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nessie1965
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8 Replies
charlie12 profile image
charlie12

Hi there

I had the same pathology but was told it was borderline. I have had pain on and off since ...it was removed in Jan 2010, I was reopened ( not recommended ) and nothing was found ....but this made things much worse pain wise.

I really do think that these big masses do damage to one's insides that take a while to settle down.

I would strongly advise a second opinion is a second look is recommended , unless of course something specific is seen

Take care xxx

Lily-Anne profile image
Lily-Anne

I get pain and am tired sometimes, and my operation was seven months ago, I think the body takes ages to heal after a major operation, for peace of mind I'd call the surgeons secretary and ask to see him, rather than worry.

LA

BJ_UK profile image
BJ_UK

Like you I was diagnosed with mucinous adenocarcinoma of one ovary - they didn't actually tell me the grade, but definitely invasive so presumably either grade 1 or 2. I understand that the reason they may not have given me the grade is that it was not entirely clear, but it definitely wasn't borderline. Like you I was told no further treatment was necessary.

Also like you, I have continued to have symptoms. My surgeon feels that most if not all of these are down to adhesions, and says that I should expect it to take at least 2 years to get back to normal after such major surgery. My CA125 has beeen in the range 9-12 post surgery.

It's good that you are being referred to a colorectal consultant, as our type of cancer can originate in our GI tract then spread to our ovaries, rather than starting there. That's what they'll want to be ruling out.

Hugs, and hope the symptoms lessen soon!

Barbara

joolly profile image
joolly in reply to BJ_UK

Hello Barbara.. and everyone..

Just a wee tip that might be useful for those not mending well after their major surgery.

I ran a natural health store for many years and had witnessed Serrapeptase enzyme have a great effect on many of my customers when I had recommended it as a possibility for scarring and adhesions. It is an enzyme made by silk worms to break down the proteins in their cocoon. It only works on old dead tissue. I started taking it before my surgery and will continue to do so. It is now only 3 weeks since my surgery and I feel much better than I imagined I would. My surgeon couldn't believe how well I looked last week and how well I am healing. I recommend an enteric coated tablet as opposed to a capsule. I am taking a 250 000iu dose every morning. I also have been taking a strong dose, high absorption turmeric capsule 3 times daily (for inflammation), a high strength CBD oil (inflammation, pain, anxiety, anti cancer) and Dr Wolz Immunkomplex (a whole system support that includes anti cancer Beta Glucans). They are my top 3 :) but I also take chlorella (detox, alkalise), anthocyanidins/ anthocyanins (wound healing, anti cancer), and Aloe Vera juice (anti inflammatory, gastro intestinal soothing). And I meditate too.

But the main aim of this was let you all know about the serrapeptase. I have seen it work for adhesions and scarring, even when started by some of my friends long after their surgery. So it's definitely worth looking at.

I feel good and am sending my CV off today .. thinking about getting back to normal soon. I have only a little discomfort where there is some bad stitching still, under my scar and I wouldn't attempt to lift my cat just yet :) but I'll give those things several more weeks. Aside from that I'm all good... thanks to those supplements I reckon.

I wish you the very best of healing

Lotsa Love

Julie

Heffmeister profile image
Heffmeister

Hi there, I also have mucinous disease. It started out at borderline 1a but unfortunately after my hysterectomy I reoccured 14 months this time as invasive 3c. I presume you had a full staging with your hysterectomy? Did they remove your appendix and ometum too? Chemotherapy is generally not very effective against mucinous disease- if you end up going down that route then you might want to see if you can get into the MEOC trial which is trying to find out which regime of chemotherapy is best to treat this type of ovarian cancer. As Barbara said the colorectal appointment is to check that the primary isn't in the bowel. They may want to do a colonoscopy to check. I your position I would get a second opinion on your treatment and follow up.

Good luck!

nessie1965 profile image
nessie1965

Hi all, many thanks for all your replys it is helpful to know others have been in a similar situation. Have visited my GP who has referred me for urgent ultrasound due to the bloating of the abdomen again and the fact that i am getting pain on and off in both areas of the kidneys. Also received a further letter from recent surgery check up and one line of which concerns me and it is "needs to have metastatic disease from her primary colorectal carcinoma excluded" was not aware i had a colorectal carcinoma!!! any thoughts anyone, thanks Nessie

Caressagee profile image
Caressagee in reply to nessie1965

Hi All,

I was on the other end of the spectrum, they found the first tumor in my appendix during an appendectomy that lead to 3 new tumors in a months time after the the surgery. This lead to another surgery, open bowel resection to get a head of the disease. Hear I am with the same symptoms 8 months later and 1 month away from my 3rd check up. I've had no pain as of yet but the being sick to my stomache, vomitting so solid food is out of the question. From what I understood was that it ordinates in the colon and spreads to other regions like the reproductive which I had already had a hysterectomy many years prior for other reasons. It's nasty, good luck and God bless

scraggs profile image
scraggs in reply to Caressagee

I am new. How are you now?

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