My name is Mike. My wife (31 years Old) was recently diagnosed with MOC and had a 15CM Tumor removed from right ovary (took tube and ovary with it). 1 month post surgery now, and we are almost done with fertility stuff to freeze Eggs. Next is Chemo (We meet with NYU chemo Dr. on Wednesday, Sloan Second opinion was today).
I know there are a lot of you on here who have, or had MOC, so wanted to see if anyone understands my wife's unique case. I've researched all the different stages and forums, and can't find anyone who experienced something similar. Pathology report came back as 1C @ NYU (where surgery was performed - Dr. Douglas Levine), but just got a second opinion at Sloan who says it could be IIB, but can't tell for sure, and said it doesn't sound like we will ever know. The NYU Oncologist said tumor was positive, and it leaked so she will need Chemo (Standard for 1C), and all other tests came back negative (including the washings) except for a nodule found on her Pelvic Cul-de-sac. Dr. said he scraped it off and it tested positive for cancer MOC. Pathology report and Dr. can't tell if this this spread, or if it was a piece of tumor that broke off and settled in the pelvic cul-de-sac during surgery. If this started to spread to that area, then it's IIB, but if it just broke off during surgery, then it's IC. Sounds like a big difference when it comes to prognosis, but chemo treatments are the same. NYU is saying Carbo/Taxol, where Sloan is recommending the Colon Cancer Chemo, but also said it's her choice. Colonoscopy and endoscopy all came back fine. Sloan also said they would have removed appendix, which NYU did not. Anyone else MOC 1C+ experience a broken tumor (or detached fragment) spotted on the pelvic cul-de-sac? What treatment should we choose?
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moneill1211
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HI, I sorry I can't help with the information you need but if you type mucinous stage 1c in the Search MY Ovacome in the top right hand of this site then enter you will be able to read previous post on the subject, I'm sure some ladies on here will also be able to help,
You can also email support@overcome.org.uk they maybe able you help you find more information.Take care Lorraine xx
I've no real help but it's horrible waiting for info and replies and I've read your post several times trying to put myself in that position. I have mucinous Ic too and after surgery they said they had 'dropped a bit' and couldnt find it but had washed everything out. The next appointment they denied saying this and said the thing had 'leaked' and they washed everything out.....so technically I could be in a similar situation..
I'm waiting for carbo only - that's what you get in the UK now so no Taxol for this and no bowel chemo so I wouldnt be given your choice. I don't know your hospitals either although it sounds from the post as if Sloane might be more clued up? I don't think there is much difference in results between bowel chemo and the carbo/taxol so I would choose the hospital /doctor which you and your wife feel the most confident with.
Sorry I can't help more - best wishes and let us know how it goes if you can.
I'm so sorry that you and your wife are having to deal with this.
I was finally dx 1c grade 1 mucinous (due to surgical rupture) aged 40 in 2012- I am fotunate to have been NED since. The rupture happened during my first operation which was to remove what was thought to be a 'harmless cyst' which had been spotted during an IVF scan. (more details in my first post here on HU healthunlocked.com/ovacome/... )
In the UK, it is standard practice with Mucinous type to remove the appendix (for testing) whilst also the use of FOLFOX or similar GI chemotherapies are less likely used for mucinous type than in the US.
There is increasing awareness that some mucinous ovca tumours have their origin elsewhere. My understanding is that as well as the staging process to determine this, histology may also help to determine this and I wonder if this has been discussed to confirm?
The various chemo options for mucinous in the US are discussed more on the Inspire OvCa forum- there used to be a group there ( a few years ago) called 'all things mucinous' which seemed to have a lot a very informed posters. It may be worthwhile asking there, if you haven't already.
It's such a difficult decision to decide on a chemo option when two respected centres have proposed alternative approaches especially when your world feels as its been turned upside down.
Petrolhead Faye has shared some excellent and recent research resources on here which are specific to mucinous and early stage so I would suggest you have a look at her earlier posts.
I am so sorry to hear all that you have been going through.
In respect of the grading I don't know that it makes much difference they will give you chemotherapy anyway and keep testing you and scanning for several years.
I opted for Carboplatin only and vetoed the Taxol, mainly due to not wanting to endure the stuff. Looking back I feel that might have been foolish, but I had small children and didn't want all of the side effects that went with it. Only the cancer sufferer can make that decision. Chemo is not as bad as I thought it would be, so don't be too nervous about it.
I really wish you both all the best through the coming months.
Hi Mike, I'm sorry to hear about your wife. I'm not very familiar with the type of cancer she appears to have, but it is interesting that Sloan would recommend putting her on a Colon Cancer regime, rather than the industry standard Carbo/Taxol, especially when there doesn't seem to be any colorectal involvement. From what I've read, mucinous OC has some biological similariities to Gi cancers, so I guess that's their reasoning there. It would probably be ideal for them to do some sort of test of the tumor, or cells to see what responds best to it. .
Also, from the studies I briefly read, it's not absolutely necessary to remove the appendix unless there was evidence of cancer involvement on it. It's primarily done as a precaution, in case the mucinous ovarian cancer is actually secondary to cancer of the appendix.
Here's the conclusion from one study:
"CONCLUSIONS:
Our data suggest that in cases of apparent early-stage mucinous ovarian borderline tumors and cancer, adding an appendectomy at the time of surgery is not warranted in the absence of a grossly abnormal appendix or evidence of metastatic disease."
Do let us know how it goes, and I wish her all the best.
Hi Michael, sorry for the late response. Could you please cite the source of the study you've quoted? It may well be helpful for people who use old threads for information, but of course vital that they know who, what, where, and when the conclusion was come to.
In the Uk it is common practise to remove the appendix with Mucinous OvCa. This is diagnostic as well as preventative I believe.
Mucinous is one of the rarer tumour types and in a number of ways is different to other OvCa types. As you're now aware, there are similarities with some GI cancers hence why different chemp options may be suggested ( its also the case that Mucinous OvCa do not have the same levels or patterns of response to what you've described as 'industry standard') Additionally, some mucinous OvCa are now understood to have originated elsewhere, so not actually ovarian as believed. There is a great deal of new understanding happening and also, hopefully there will soon be results from those centres who have for example used GI typical chemo regimes (this has been morecommon in USA). There is still a great deal to do and unfortunately is hindered by the relatively small numbers, one clinical study about mucinous types closed because of too few participants.
I wouldn’t worry too much about staging. Although it gives an indication of spread that is mainly relevant for surgery and monitoring on subsequent scans. The chemo dose and procedure offered would be the same from stage one to four. If you want more info on stage/grade you’d do best to read the latest FIGO info.
OC uses peritoneal fluid to travel around the organs with a seed and sow path. Solid tumours don’t and tend to remain isolated
I would ask for all the options they have and the outcome for each. Then I would ask what they would choose for their partner. Active involvement in the treatment plan is always a good thing
I meant to mention Mike that you and your wife may find some useful information in the 'Younger Women's Guide to Ovarian Cancer'. It was created as a collaborative project including all of the main UK OvCa charities: Ovacome, Target Ovarian Cancer, The Eve Appeal & Ovarian Cancer Action and, perhaps more importantly, many women who have been affected and those closest to them. It won an award at the BMA and can be downloaded from all of the charities' websites (those in the UK can get a free paper copy too)
Link here to TOC Guides which includes the one mentioned above as well as a good guide for anyone newly diagnosed, 'What Happens Next?' (other guides are also available)
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