Thanks again for great responses

Suzsen: Good info on the BRCA age thing. My sister died at 55, but her ovca was so far along she may fit in the window; I don't feel I'm quite out of the woods.  If Mother's comes back negative, there's always the possibility that Dianne's was random or inherited paternally.  The medical school in Dallas has a good genetic couseling program and I'll likely make an appointment for risk assessment.

kathy o:  I don't know how much the BRCA testing costs, but I'll try to find out.  The people at the cancer center said that Medicare almost always pays for it with a positive ovca dx.  There's only one company, Myriad in Utah, doing the test. Considering that we're dealing with a monopoly, I doubt it's cheap.

Maybe some of you who live abroad could shed some light. Because this is a topic of general interest, I'm going to start a new thread titled BRCA costs....see you there for that topic!

I am so sorry for you and your mother on her diagnosis, but this is a wonderful group of very knowledgeable and caring ladies.  They will be glad to answer your questions--and we will all be glad to listen and share with you.

You can ask or say whatever you need here.  Good Bless!

After my mom was diagnosed with ovca at age 67, and my dad's sister had died from ovca at age 78, I went to a genetic counselor.  She said generally in families with the BRCA gene, ovarian or breast cancer shows up in women in their 30s and 40s.  Since your mom is 84, is seems less likely that it would be genetically related.

That said, I am 43 and since my mom's dx two years ago I have had a TVUltrasound and CA125 annually.  My gyn said we would remove my ovaries when I turn 50 or start into menopause, whichever comes first.  (I already had my uterus removed 4 years ago for adenomyosis). This spring I developed a suspicious 5 cm cyst and was ready to remove my ovaries NOW.  Luckily it went away, but now I have another one that's 2.5 cm. Assuming this cyst goes away by itself, I still might remove my ovaries a few years sooner than age 50.  

Dr Judith Reichman had a great column on the decision whether or not to remove your ovaries, it was on the Today show website in April.  Useful info on the plusses and minuses.

I was wondering if you could tell me how much your Moms brac testing was ? I cannot seem to get any sort of price on it here in the small town where I live, and also was it  a blood test or a dna swab. Thanks for any info.
Kathy

to sm2006:  BRCA-1 & 2 are genetic mutations that predispose women to breast and ovarian cancer (at least that's what Ive gathered so far).  I would think that you might was your mom if her doc tested her for it.  That's one of the first things my mom's oncologist did. She said it was much better to get Mother's insurance to pay for it.  If Mother is positive, then I will see a genetic counselor and decide if I want to be tested. My understanding if that if she's a carrier I have a 50% chance of being a carrier, too.

to MickeyVicki: We have a great home hospice here, and chemo won't preclude it.  They're a phone call away.

to everyone else: YOU ARE AMAZING AND KIND.  I can't remember your nicknames long enough to bring personal replies to this form, but if I could I would.  I only hope that as I grow in my knowledge I can one day support others as you are supporting me.

And now off to finish cooking some healthy, mushy food (a meatloaf from Silver Palate cookbook, real mashed potatos with butter and cream, and a carrot souffle) and pick up mother for dinner!  Hopefully she'll eat some of these yummy things, and I won't each too much!

My first thought on reading your post is that you have a brief and very tough road ahead of you. Unless you have dealt very  closely with a great deal of loss, then it will help everyone in your family to have someone along as a "guide."  Ask for recommendations to counselors trained for this situation.  Hospice services have such counselors and social workers, but depending on where your mother is located, the chemotherapy treatment  might preclude hospice care.  Then again, it appears the chemotherapy is for palliative care only, so hospice might well be an option.

Also, as for  your health future, please seek the advice of a genetic specialist who can better assist you in making a choice in  your own medical care.  

Last, I will keep you and yours in my prayers.

My heart really really goes out to you as I'm seem to be sharing the same feelings as you are! My mother is 65 and has had OC for 2 1/2 years. I live 2 continents away from her and only wish I knew more the severity of this illness.

My mother also has a CA125 of 4500. I read constantly that it's high. The other night I had her on the phone and I asked her if she knew more? She told me that her doctors don't tell her anything. I don't know whether to believe her or not. She told me that when it's important they would tell her. I can't seem to believe her. She's also on carboplatin every 3 weeks, IV. She tells me she's fine. Feels great.

She had 4 liters of fluid removed back in April and tells me she's lucky not to have anymore fluid buildup in her abdomen again. That is a good sign, I'm assuming. Her chemo was restarted in May and it's shrunk the CA125 by 500 points. She used to have in April 5000.

Her last chemo is Sept 12th. Then she says she will come fly here and visit her grandchildren. She also is under the impression she will live to see the kids get married...(my kids are 6 and 7 years of age mind you). Heartbreaking.

I'm scared she doesn't seem to see it herself. So basically, I'm just as scared as you are and need as many answers too. By the way, what is Braca -1 and -2? Is that an important question for me to ask my mother?

But hang in there, the people on this website are amazing support and so helpful. We are all here together no matter how far apart. Lot's of courage and strength and a strong hug to your mom!

My thoughts and prayers are with you and your mom. I can only imagine what you are going through. I so hope that the chemo will be beneficial and that she will be able to somewhat maintain a good quality of life. Don't worry about stepping on anyone's toes...we are here to help you in any way we can.

My mom was a 17 year breast cancer survivor that ended up having a massive heart attack. I was diagnosed with stage IIIC ovarian cancer at 46 and a recurrence at 48. Unfortunately, I never went through any genetic testing to see if I was at risk. If I knew then what I know now, I would have told my doctor to "take it all - ovaries, uterus, breasts - just give me some good looking  breast implants!" I know it may sound radical, but I would do that over chemo any day.

Based on your family history, you should gather all the facts so that you can make an informed decision regarding your health and the future. We are here to support you in any way possible, so don't hesitate for one minute to ask any question or just use us as a shoulder to lean on.

Keeping you and your mom in my prayers - Gina

Hello...dian here...you absolutely need not take this off line...you will not be stepping on anyone's toes and you are definately not making anybody here uncomfortable....we are women here  (and a few men) helping eachother deal with that monster you and your mom are dealilng with...we are here for eachother..in the good times and the bad....we are caring, brutally honest and compassionate people and we welcome you with all the experiences you chose to share and all the questions we might be able to help you  answer to....it is wonderful to be able to go to a place where you are protected and safe...that is here....welcome.  We would all be honored to take this walk with you and your mom....
Peace.
dian

As a new poster, I'm not sure of forum etiquette and norms. Do people post their email addys for private responses?  I realize that my question about what to expect as we reach the end of my mom's disease process may be uncomfortable for some and seen as inapporpriate by others.  It is, nonetheless, very much on my mind.  If this is something I need to take off-forum, please let me know. I suspect I'm going to need you gals in the next few months and don't want to step on any toes.

Hi,

I am very sorry that you have to go through this.  I was diagnosed with stage IIIb ovarian cancer at 37.  My mother died of this disease.  My aunt and cousin (all on my mother's side) currently have it.  There is a braca1 mutation involved.  Knowing what I know now, I would have definitely have had my ovaries removed but I did not think that I would have to worry about it until the age of 40.  This of course is only my opinion and the decision you are facing is very personal.

All the best to you.

Welcome to the site.  Just letting you know that you and your mom are in my thoughts and prayers.  Godspeed
~Tascha

Thanks for your response! The chemo is IV, as her doc is trying to shrink all tumors, particularly the large lymphatic tumors that are causing her such pain and, in some cases, have come up - literally - over a couple of days.  This bas*%^rd is moving so fast...on a Thursday she had no palpable lumps under her arm and by the following Monday she had a lump almost as large as a tennis ball. The resulting CT showed tumors pretty much everywhere in lymph. Everyone thought it was lymphoma until the biopsy report on the first mass they found came in. Originally, the radiologist on the subsequent CT thought the primary site was uterine, but the ob/gyn's transvag u/s showed a perfectly healthy uterus...not even a fibroid. The mass was directly behind it.

Her oncologist listed surgery as an option, but concurred with my mom (who is still sharp as a tack) that an open abdominal surgery with a long recovery in a woman who will be 85 in August and advanced mets is probably not a good call.

If I hadn't seen the labs myself, I'd have a hard time believing the sky high CA 125.  

Her only presenting symptom was back pain, and her doctor found ample explanation via xrays and such.  Even with the lymph involvement, her white count was normal.  Bizarre, yet true.

My heart is breaking for what your mom and you are going through.  There is nothing you can not post on this site.  We are here for each other, no matter what the question/experiences are.  I will be praying for you and your mom.  Kasie

Hello again,  First of all do not give up all hope.  However, I perfectly understand your need to know.  At the end, my mom was fed of tubes because hew bowels were blocked and like either at home or in the hospital bed.  She experienced no pain as the doctors took this aspect very seriously.  Ther are hallucinations in the end.  The person is half-awake and then half-asleep.  Your mom will recognize you.  This part may last for weeks.  My mother died in her sleep.  The proecess of dying can take a few weeks to a few months.

Find a good hospice where you can be sure your mother will be well cared for.

I hope that this has been helpful.

Hi there sorry to have to come here under such circumstances. This does all sound typical to me unfortunatly, if she is tolerating Chemo well and this is working for her then by all means keep it up. Her ca125 was rather high, I was in stage 3 and mine wqs 444, but everyone is different I have read about numbers as high as your Moms come down considerably.
I think that you would be so wise to research your options if her brac test comes back positive also if you have children they need to know ! You may be able to stop this in your family now, and that would be a wonderful thing. Wondering if they are giving Carbo straight through abdomen to Tumors ?
Give your Mom a hug for me and keep us posted
Kathy