Meaning & action for Adenocarcinoma came from Mucinous Cystadenoma-basketball mass

[carolyn663]

Surgery Nov 3, 2010 -age 54, went into Emergency with severe abdominal pain.  My Gyn/Onc says it was a pelvic mass, an adenocarcinoma that came from mucinous cystadenoma -the mass was MY right ovary, when cut open it was honeycombed inside-cysts within cysts, they think the cancer was contained inside the mass, no cancer on the outside wall.  They did a peritoneal wash, removed the omentum, both ovaries, falopian tubes & appendix and found no other signs of cancer.  I had a hysterectomy when I was 38 due to heavy bleeding & survived breast cancer from age 31.

I have been given 3 choices 1) Do Managment - regular gyn/onc visits for testing-bloodwork/ultrasounds; 2) Do 6 rounds of monthly Chemo-to start Jmid anuary and 3)  Exploratory pelvic surgery to see if there is any other cancer, or see if the cancer actually started somewhere else OR did it start & stay contained in the ovary-I was told this was more invasive than the surgery I just went through and comes with many added risks-my gyn/onc did not recomment the 3rd option.
Anyone else given these 3 choices, and were you happy with your pick?  

I do NOT know what Stage, Grade or Cell Type of cancer I have as I just got my cancer diagnosis and my gyn/onc clinical nurse says my file does not have this info and that the pathology report can't be read as there are no Dr's in this week due to Christmas.  I was hoping that I could give my family more info on my diagnosis at Xmas BUT it seems the more research I do the more I find out I DON'T know!

I am guessing Stage 1-cause they only found evidence of cance inside my ovary and no where else;  and the the Cell Type is the Adenocarcinoma from mucinous Boarderline Cystadenoma -glanular tissue
; I have no idea on the grade as I don't know if the cance orginated in the ovary or started somewhere else?? undifferentialed?

If you had sort of this diagnosis- Did you do the follow-up Gyn/Onc appts OR did you go for the Chemo route to make sure any missed cancer would be taken care of? And how was the Chemo route?

[kcd86]

It appears that you present with stage I epithieal ovarian cancer(EOC) (disease confined to the ovary) or II disease (tumor beyond the ovary, but confined to the pelvis). This is usually managed initially with surgery. Further therapy is generally not recommended for women with well defined stage I tumors as five-year disease-free and overall survival rates are >90 percent. Since you have a history of brest cancer it will be very important that you discuss this with your GYN/Oncologist for proper trteatment.
For women with high risk stage I and stage II EOC, the addition of platinum and taxane-based chemotherapy significantly reduces the likelihood of disease re-occuring
Treatment outcome is dependent upon many factors, including stage, pathology report and grade, age at diagnosis, and extent of appropriate surgical staging.
Good luck

[carolyn663]

Thanks for your response kcd86,

Do you think I am high risk because I had breast cancer at 31 & that the chemo route is a good idea?  IF they say my survival rate is 85% or more, are the every 3 month checkups & testing accurate enough to catch an early cancer?  Just looking for your thoughts, not advice.

I see my gyn/onc Jan 10th to discuss what the chemo treatment would be that is scheduled for the week after, I can still back out of the treatment,  they just wanted me to be in the loop.

I know people should NOT take the chemo treatment lightly but if it gives me better odds at survival I am thinking it may be worth it as I am a doer kind of person.  I will take your info with me at my gyn/onc appointment.

[kcd86]

If this was straight up epithieal adenocarcinoma there would be no question about chemo> I am not sure about Mucinous Cystadenoma and reoccuring tumors. This type of mucinous tumor is concidered borderline ovarian cancers and are slow growing. Recurrence depends on wether the tumor was removed intact, the mitoic index of the tumor cells(how agreesive the cancer cells are). I would ask your surgeon if he removed the mass TOTALLY INTACT, does the pathology show anything that this may be related to the breast cancer or some other primary site(? your surgeon about a PET scan if there is any doubt about another primary site).There is some correlation to the breast cancer BRACA gene and OVCA. If there is any doubt about the pathology of this cancer I would without hesitation get a 2nd pathology opinion with regard to the specifc type of OVCA they are seeing. My wife has granulosa cell ovarian cancer and it is one of the rarer ones also, the gyn/onc at Sloan Kettering in NYC said that some surgeons who dont see her type that much might not recognize it as cancer she new right away before path confirmation. Is this pathology department in a large medical center that sees a big population of ovarian cancers? These cancers are on the rarer side of the OVCAS's, this is why it is important to be in a large medical center that has a busy gyn/onc department.
Good Luck
Kevin

[carolyn663]

Hi Kevin,

Sounds like your wife has an experienced team at NYC, I think this is 1 of the most important factors in the cancer fight.

My incision is from breast bone to pubic so they could remove the basketball size tumor in tact.  My gyn/onc was very happy this was achieved.  

I was told they don't know IF the ovary was the primary location for the cancer and that is why my 2nd health option is to start chemo in 4 weeks in case there are any cancer cells remaining elsewhere.  There was no evidence of cancer on the outside of the ovary, in the appendix (which they said is often the primary location), falopian tubes, other ovary, omentum and no cells present when they did the peritoneal wash.
Our pathology department is the largest medical center in our Canadian city & apparently I have 1 of the best gyn/onc teams here.  I was told this by the emercency hospital I was orignally taken to-it was they who immediately sent me to the Women's Pavillion Hospital.

I wish I know the Grade, Stage and Cell type - as then I could do more specific research.  IF your wife had Stage 1a or 1b, would you suggest she go through 6 rounds of chemo or would the>85% survival rate be good enough odds to do the every 3 month Followup Watch Appointments.  

Good luck to your family in recovery and here's hoping you have a good outcome.

[kcd86]

Since they said she took the mass out 100% intact and it is a cancer from within the ovary not from the surface we are doing the every 6month check up

[carolyn663]

Thanks for your respose, I am glad to hear that you came out a winner.  Did you do the 6 monthly treatments?  Do you remember the drug names they used? What was the worst side effect for you?  My boss and disability insurer want me to work how ever many hours I can during chemo - was this possible for you?

I too, am a doer kind of person & we have decided as a family that the 6 month chemo is our only option. We decided now is the time to deal with any cancer cells that may be around or in the future we may regret it and say "We should of done the chemo" We will put up the best fight now and carry on. It was 23 years ago yesterday that we took the aggressive fight with my breast cancer - did the modified radical mastectomy at age 31.  I would rather be a survivor and do whatever can be done, you just have to work with the cards you are dealt.

I wish you & your family continued health.

[manneca]

I had a similar cancer and did four rounds of chemo because I wanted to make sure. Generally I felt miserable. I did chemo every three weeks. The first week was pretty miserable (though the first couple of days afterwards were OK cause I was taking steroids). then, I'd go downhill until the next week when it was time to take a series of shots to boost my white blood cells. I'd feel OK for about a week of three. Everyone is different, though. There is no way you can predict how you will do. Sometimes, people have different experiences with different rounds.

Blessings on you.

[carolyn663]

Thanks for your reply.  

I have been busy with all the pre-chemo appointments.

I am set for Chemo #1 on Tuesday Jan 18th, for 6 rounds every 28 days and will be on carboplatin and taxol.  I was told the major side effects are normally - all the hair will go (I hadn't thought about my eye lashes), fatigue and have achy bones + all the other possibilities.  My Gyn/Onc said they are pretty good with the meds to counter act the nausea-here's hoping!

Maybe it is a good thing that they can't predict everyones side effects,  that way we are all different.

Wishing you continued health.

[shewrites]

When they say all the hair, they mean all.  No shaving, which is a bonus, I think.  Sparse eyelashes, eyebrows, and hair.  (I had "stubble" throughout.)  If you look at wigs (at a beauty shop or specialist store -- not a department store) you may find that they have bed caps, scarves crafted with a skull cap underneath, baseball caps with bangs and/or falls attached, and probably headgear that wasn't invented yet when I went through this.  At a minimum, get a bedcap so you won't be cold when you're sleeping.  I got a wig similar to my regular hair color and style so as not to cause double-takes.  But my cousin was much more daring -- she bought lots of cheap wigs in all kinds of styles and colors and just had fun with different looks.  

They may also have a kit with stencils and powder/brushes to replace the eyebrows.  I bought a cheap Maybelline eye pencil which was sufficient.  I also bought inexpensive false eyelashes and used them on occasions -- such as my daughter's wedding.  

I didn't have nausea, but I did have constipation.  Ask for recommendations about that because the meds they give you go combat nausea have that side-effect.  Once I'd overcome the constipation, I was good to work (in my home office) for the next three weeks.

You can do this.  Lots of us have.  Don't be afraid to "baby" yourself a little.  Good luck and keep in touch.  

[dian07]

Good luck.....I am glad to hear you will do the chemo.  I was really hoping this is the path you would decide on.  
Chemo is not fun but it is doable.  
I hope you feel well enough to visit from time to time just to let us know how you are doing and to address any issues are having to deal with.  
I will be watching for you.
Peace.
dian

[carolyn663]

Well today is day 6 after my lst chemo, and touch wood the nausea was controlled, the 6 pills you take the first couple days-Ondansetron and the few Maxerans I took the following days worked.  Yesterday I seemed to be more sluggish but my appetite is good.    
I bought the wigs as I was told my hair will definitely go, I got 1 similar to my own and l a bit more funky.  I also registered to the Look Good Feel Better program to address the makeup etc and how to create some eybrows.

I have the pills to combat the constipation issue and bought some prune juice, I don't want this as a battle, I suffered with this after I got home from the hospital and had to go back to emergency-the 48hrs of pain I suffered at home was almost unbearable.

Every day seems to come with different symptoms or is it that I am just more aware of my body's aches/pains and grumbles?  So far I am happy with where I am at. I know I have just begun my treatment and many will probably think-just wait til the next rounds.  That's OK, as my husband always says I wear rose colored glasses, I am not about to take them off.

Thanks for your words of encouragment,  it's so nice to hear from people that have travelled on the same ship going through this adventure.

[dian07]

You sound great !  My mom used to tell me I "live in Alice in Wonderland's world"....those rose colored glasses come in handy for some of us some of the time!
I think you are right....we are more in tuned with our bodies after we find we have been invaded like we have......I think that's a good thing.  But, those aches and pains and grumbles are for real.  That stuff (chemo) is toxic to your body ....it's really hard on your body......it's poison and every cell in your body knows it.  None of this is in your head, kid...no imagination at work here.
You hang in there.....you will have good days and bad days.  Chemo was accumulative for me.....we are all different.  Please do stay in touch.
Peace.
dian

[shewrites]

Sounds like you're off to a great start.  I usually felt normal a few days after chemo until the next round.  We're all different, but I suggest that you keep a positive outlook, call it rose-colored glasses or whatever.  And if things don't go smoothly, call for help.  

I think I was more concerned about my appearance during my chemo months than usual.  I used a moistuizer with a tint in it on days I wasn't going out, for example, something I normally wouldn't bother with.  I also didn't tell a lot of people that I had ovarian cancer.  People think it's a death sentence, and I was not willing to be treated like a "dead woman walking" when I was sure I was going to survive.  I think that may be the reason I was concerned about my appearance, also.  

One thing I didn't do, because I thought that women with more life-threatening cancers would "hate" me, is join a support group.  That's why this forum is important to me.  Turns out, I do have some info to share -- along with sympathy, prayers, etc.  

Good luck, and keep in touch.  

[manneca]

Congratulations on the first one down! I lost my hair at day 14. I had my head shaved because I felt like I was sleeping with a shedding cat. I would wake up with hair in my eyes and mouth.

I didn't wear a wig--my way of saying FY cancer! But I had several caps I slept in or wore when it was cold outside.

Three weeks after my last chemo, i was off to Mongolia. I'm almost three years after diagnosis and my last check up was cancer free. Two of the most beautiful words in the English language.

Blessings on your trials.

[carolyn663]

Just an update note:
Well round #2 Chemo done on Tuesday and yes it was a bit different.  Wicked headache the 2 & 3rd day I am still sluggish on day 4.  Appetite is a bit off but this seems to be coming back.

My Onc/Gyn Dr. informed me that my lst round showed good blood levels, they did not dip down - yea ha.  I am guessing that it helps that I am still eating & drinking lots of water and that it was only round 1.

I have worn my wig a couple of times at home to get used to it,  but when I wore it out the other day to take our daughter out for lunch - I took off my scarf and jacket & then I grabbed my wig thinking I was taking off my HAT!  The people at the other tables had no idea why we were laughing so hard - what a precious moment.

[carolyn663]

Going into my 4th round of chemo next week and have felt more tired and now nausea has set in all after round 3.  Until now my 3rd week after chemo was good and I had energy but not this past month.  

Just wondering you mentioned yours was accumulative , did the side effects just keep getting more intense for you and did you get any new ones-like sores in the mouth, achy muscles etc?  This all makes sense since they just keep pumping more chemo into my body.  I'd like to know and be prepared what I've got coming over the next few months,

Thanks for taking the time to share,

Carolyn

[dian07]

Hey there, kid.  So sorry you are having to go through all of this......none of it is fun.  
Yeah....for me it was accumulative....not a good thing for you to hear.
I didn't get sores in my mouth but I wouldn't be surprised......your defense is down and your stress levels are up.....that is usually when my kids would get those stupid canchor sores in their mouth.  They are painful and stressful too.
I had terrible pain in my long bones.....even including my ribs......my bones were trying to produce white blood cells.   That pain was incredible....it would wake me at night..it was awful.  I asked for something for the pain and my oncologist helped me with it.  As soon as my chemo stopped so did the pain.
My muscles ached; but, so did everything else.  All I wanted to do is sleep.  
My energy returned slowly, but it did return.....it is still returning.  This is a life changing experience; but , that is okay.  A different perspective can be a good thing.
You hang in there, kid.....stay in touch....I will watch for you.
henslick at netins dot net if you want .
Peace.
dian
I was tired for a long time afterwords and my "chemo brain" was difficult to deal with but has gotten better with time.
You know, you can't pump all this stuff into your body and have no long term effects.  It does get better, but who knows what to expect?  I don't .
I am just glad to be here.

[gah_70]

Just a suggestion - if you find yourself developing sores in your mouth, try taking a frozen popcicle or two with you to chemo and suck on them during your infusion. The cold slows circulation in your mouth so the chemo is slower to pass through that area.

Good luck to you!

Gail