My mom has been diagnosed with ovarian cancer..seeking advice

av711, of course you are allowed to post here.  None of us fight alone, and couldn't make it without the love and support of family and friends.   Of course, it is understandable that you and your entire family are worried and trying to find answers but try to take a breath.

I am glad to hear she is working with a gynecologic oncologist - they specialize in these cancers - and they will be a plan for her.  There are a lot of informational threads here, but please let us know what her diagnosis is and what the plan of attack is.  

It is good your mother has your  support. It helps to talk to others going through similar cicumstances.

Hello All,

I was diagnosed with stage I C Ovarian cancer in August of this year and my prognosis is good. So, why am I feeling so low and depressed? I have lost my hair, my eyelashes, most of my eyebrows, and now have the neuropathy associated with chemo. I feel less like a woman and more like a naked mole rat. Anyone else experience this?

Tethys41 said:

Sorry

AMoore,

Despite what Kris Carr tries to tell us in her book, there is nothing sexy about cancer.  Regardless of your diagnosis, finding out you have cancer sucks and the treatments and their side effects suck.  I know I was more impacted when I lost my eyelashes and eyebrows than I was when I lost my hair. 

On the other hand, you are very, very lucky that you were diagnosed at such an early stage.  I know that the whole situation is still awful and it robs us of the security we used to feel about our health.  It is not easy to get over hearing that you have cancer.  It causes PTSD in many patients.  I also think that another side effect of chemo and the whole cancer experience is some degree of depression.

Things will get better though.  Your eyebrows, eyelashes and hair will grow back.  Hopefully the neuropathy will lessen.  Before you know it, life will get back on track and this will all just be a bad memory. 

I hope you feel better soon.

Good morning "AMoore"

I read your letter this morning.  I've answered you on a separate topic here https://csn.cancer.org/node/313339

because from time to time, so many here have felt just like you feel right now. 

But look on the bright side.  Your prognosis is good.  So cheer "yourself" up by having a talk with yourself.

Christmas is coming and you're still here to celebrate it with your friends and family, are you not?  Try always to remember what you still have, and not obsess on what you no longer have.  You said it best, 'YOUR PROGNOSIS IS GOOD!  Wow--you have lots to celebrate.  Refuse to be depressed for the holidays.  Maybe you should tape a big red bow on your bathroom mirror to remind yourself that “a good prognosis” is the best gift you could ever have!

Love Loretta

My mom was diagnosed with stage 4 in July 2017.  Her CA125 started at 1200 and we are now under 34 after her last Carbo/Taxol.  We are awaiting her pet scan this week to determine her surgery date.  I have to say this has been the hardest thing I have ever expierenced in my life.  My mom has 5 kids, 12 grandkids and my sister is currently expecting.  I have always been a happy person, no matter what I found the good in everything.  Since her diagnosis ,I am afraid I am forever changed and fear that person has been broken beyond repair.  I do everything with my mom, I mean she seriously is my best friend.  She did not have insurance so the financial part really got her down.  She didn't feel like she was worth what it cost to survive.  I called pages of non profits and was told by all of them that they didn't have funding for her cancer.  They were a little over 1,000 of the yearly requirment for government assistance.  I mean they didn't qualify for anything!!!  So us kids pulled together had a huge sale and with the help of great friends we raised a lot of money!!!  Enough to allow to focus on treatment and not money, which was a huge weight of our shoulders.  We were willing to sell everything we have in order to pay for her treatments.  She has repsonded well to chemo and I have her on a healthier diet.  An organic vegan diet and lots of prayers.  I recenlty lost my sister in law to a rare ovarian cancer that they said only 1 in a million women get this.  They didn't even know how to try and treat it.  She was treated and passed within 4 months.  I stay up for hours researching, buying books, supplements, organic foods you name it.  I search for survival stories.  I know so many people with cancer, but it was usually me and my family doing fundraisers for people and I never thought it could happen to us.  I don't know how loved ones get passed this feeling!  My mom is the one I always talk to about everything so not having her to talk to makes this even harder.  

Jennykay18 said:

My mom is diagnosed too

My mom was diagnosed with stage 4 in July 2017.  Her CA125 started at 1200 and we are now under 34 after her last Carbo/Taxol.  We are awaiting her pet scan this week to determine her surgery date.  I have to say this has been the hardest thing I have ever expierenced in my life.  My mom has 5 kids, 12 grandkids and my sister is currently expecting.  I have always been a happy person, no matter what I found the good in everything.  Since her diagnosis ,I am afraid I am forever changed and fear that person has been broken beyond repair.  I do everything with my mom, I mean she seriously is my best friend.  She did not have insurance so the financial part really got her down.  She didn't feel like she was worth what it cost to survive.  I called pages of non profits and was told by all of them that they didn't have funding for her cancer.  They were a little over 1,000 of the yearly requirment for government assistance.  I mean they didn't qualify for anything!!!  So us kids pulled together had a huge sale and with the help of great friends we raised a lot of money!!!  Enough to allow to focus on treatment and not money, which was a huge weight of our shoulders.  We were willing to sell everything we have in order to pay for her treatments.  She has repsonded well to chemo and I have her on a healthier diet.  An organic vegan diet and lots of prayers.  I recenlty lost my sister in law to a rare ovarian cancer that they said only 1 in a million women get this.  They didn't even know how to try and treat it.  She was treated and passed within 4 months.  I stay up for hours researching, buying books, supplements, organic foods you name it.  I search for survival stories.  I know so many people with cancer, but it was usually me and my family doing fundraisers for people and I never thought it could happen to us.  I don't know how loved ones get passed this feeling!  My mom is the one I always talk to about everything so not having her to talk to makes this even harder.  

I am so sorry to hear this. I feel the exact same way about my mom. Her cancer has come back and we are learning more about treatment options etc. each day. I am thankful that she was able to be with us for these 5 years (in remission) but I want her around for the next 15 or 20 years. She is my best friend! Blessings to you and your family!

Mollimouse said:

My mom also just got the diagnosis... no advice, just support

hi,

I thought I’d join in because my 70-yr-old Mom also just got the diagnosis on Feb 28 (2018), and i’m also an only child. (And one that’s failed her by making it to 34 w/o giving her grandchildren!). It happened so fast—went from having digestive issues to being bed-ridden and full of fluids within two weeks. The doctor said there was nothing to be done, but we got a second opinion and she had her first infusion of Taxol/Carbo on Friday. But i’m really worried because my mom isn’t eating or drinking, is entirely bed-ridden, and her mood is very negative. I’ve suggested meeting with a therapist or a support group but she says she doesn’t need it. i don’t know how to compel her to eat/hydrate or seek support. On top of that, my (87-yr okd/hard-of-hearing) Dad is demonstrating a terrifying inability to advocate on my mom’s behalf, or even recogniz the severity of the situation. So basically I am just posting to add my thoughts and prayers to the other on this board, offer my support any way that I can—i honestly feel that fellowship with people going through similar things is comforting on some level. This just feels like the worst thing in the world, so I want to send my love to everyone else though I can’t offer any advice! I hope for the best for all of us! Much love. 

Mollimouse, dear, you are overwhelmed.  

First, you did not "fail" by not producing grandchildren.  I am sure your parents would want your health and happiness to be primary concern.  (I have four sisters and my parents didn't get ONE grandchild)

My heart breaks for you.  I am sure both your parents are both shocked and terrified.  From what you say you are giving all the support you can.  My prayers are for your family.     

Good evening & welcome Marsha~

          Well, well Marsha, with one brother who “doesn’t deal” and another brother that lives 500 miles away, looks like “you’re the one” to carry the load.  But you’ve come to a good place for help. 

Having been responsible for taking care of my 97-yr. old mom’s financial dealings, and having the power of attorney for both her and my invalid sister of 70 was a big responsibility.  And I have to say that although I should have been the “boss” my mom never relinquished the role.  Now I’m 79, and feel like it I should be able to have the “last word”, even when any one of my sons is doing me a favor.  So I hope that your “young” mom of 67 is going to be fully cooperative.  So feel free to come here and some of us will hopefully be able to help.  Many of us are in different stages of Ovarian cancer, and in different types of treatment.  Some are in remission, that’s always a good place to be. 

          As for me my story begins just like your mom’s except I didn’t have any “advance” pains, only a little groin pain and discovery of a small nodule on the left hand side of my abdomen just below my waist.  I have a dear friend who said, “Promise me if you get that pain again, you’ll go to the Emergency room.”  She had recently buried her 50-yr. old husband who had lived 2 years with Esophageal Cancer.  And so when the pain persisted intermittently for a week, I remember the promise I made to her.  I didn’t think anything about the pain, it wasn’t acute—but I went to the ER.  (November of 2012).  Two hours later, I was given a CT report that read “PERITONEAL CARCINOMATOSIS”.

 Having been first been introduced to cancer in 2002—Advanced stage of Esophageal Cancer for my then 65-yr. old husband, I quickly recognized cancer terms.  So I think I can honestly say, “I know how you feel”.  At that time neither of us had ever heard of “Esophageal Cancer” but we became “quick learners”.  And so by 2012, I was familiar with the web and able to find good sources of information about my own.  Upon reading the report, the attending physician was telling me a little bit about it.  I asked, “Can you show me this on the computer?”  He took me to a room filled with doctors and pulled up my report on the screen.  He pointed out to me “innumerable” cancers floating around in the Peritoneal fluid in my abdomen. 

          Knowing the value of a second opinion, I went to the University of Pittsburgh Medical Center (UPMC) where my husband had been so well cared for, and had a SECOND opinion 3 weeks later.  There a PET scan and exploratory surgery revealed cancer in both my ovaries as well.  But I already knew that the Peritoneal Carcinomatosis was a Stage IV cancer.  However, in my case, UPMC, said there are “too many tumors” to have surgery of any kind at this point.  They advised me to return home, arrange for chemotherapy, and then they would reassess my situation. 

So in January I had a medi-port implanted, (essential for IV infusions for a prolonged period of time in my opinion) and a Carboplatin/Paclitaxel (Taxol) regimen began in February of 2013.  It is the combination most often prescribed for both Peritoneal and Ovarian cancers.  There is no guarantee of success, but clinical trials have shown it to benefit the largest number of patients who have this particular diagnosis.  It isn’t limited to cancers in females alone, but it has proven to be the most beneficial for the greatest number of women.  My chemo regimen of 6 sessions – each 3 weeks apart- didn’t eradicate the tumors altogether but reduced them to a size that made me a candidate for Cytoreductive Surgery. 

          So on July 1, 2013, I returned to UPMC.  There Dr. David Bartlett, performed the surgery.  It was major—major.  Having already had my uterus removed at age 36 and an appendectomy at age 12, those were two things that didn’t need removing.  So I had both ovaries, fallopian tubes, omentum, spleen, gallbladder and a good portion of my intestines removed.  These were places to which the cancer would most likely spread.

          Since then I’ve had the cancer move on to other places, but in between treatments, I’ve been able to enjoy about 10 months or so of a quality of life that I felt was worth the “treatments” I had endured.  So without going into more detail here, I would venture to say that with a Stage IV diagnosis, she will be introduced to chemotherapy sometime in the future, as her tumor markers begin to rise.

 My Cytoreductive Surgery (CRS) was never intended to be curative—only to provide me with a “Progression Free Survival” (PFS) for a time.  So don’t “run ahead” of the doctors, but most likely in time, there will be a need for some type of chemo treatments.  At this point, hopefully tests will show that Mom’s tumor markers (CA-125) will not advance rapidly.  But as for me, I’m never in “remission”—my markers are always in an upward direction.  But the “good” part is that sometimes that climb is very gradual and I can live with that.  But as time goes on, new symptoms appear.  At that point, my oncologist orders another PET/CT scan to determine just “where” the new problem is.  Yes, it’s been a rough ride but with God’s help, “doable”!

          To make a long story short, which is almost impossible for me, but for our first conversation, I will try to be short.  I have now OUTLIVED MY 5-YR. HANDICAP PLACARD.  Things haven’t been easy, but so far—worth it.  Even though the Lord could heal me, He hasn’t seen fit to, and while I reserve the right to tell my own children what to do, I don’t attempt that with God.  I have been blessed to still be here and enjoy my family.  The Lord has blessed my husband with 15 years of survival so far, so I think I am the recipient of two miracles. 

          So even though your mom has entered a new world, and so have you, it doesn’t necessarily mean that she can’t enjoy being with you for years to come.  The usual saying, “Live one day at a time” is easier said than done, but try to make yourself knowledgeable about this type of cancer, and then everything won’t take you by surprise.  I know you now feel you have the “weight of the world” on your shoulders, since “You’re IT”—but the Lord can give you the strength to endure.  I hope your mother will have a long period of progression free survival—but to be truthful, Stage IV doesn’t lie dormant forever.  But don’t rush ahead and imagine what the future will be like—today’s problems are enough.  That’s why we only have 24 hours in a day.

One thing my mom always told me, and I have benefitted by it.  “Never feel sorry for yourself.  There are always others having hard times too.” 

          There’s a saying, not original with me, but oh so true. 

“Life isn’t about waiting for the storm to pass.  It’s about learning how to dance in the rain.” 

So in your case, looks like you’ll need two pairs of “dancing slippers”.  One pair for you and one pair for your Mom.  Oh, and one more thing, in the case of your two brothers—unless they’re walking in your shoes—I wouldn’t be too inclined to listen to any criticism of how you should be “taking care of Mom.” 

Love & prayers for both you, your Mom & Dad,

Loretta

__________________________________________  

P.S.  Here are some helpful & reliable sources of information for Ovarian cancer.  And by the way, I hope you are following up with a “gynecological oncologist”.  They have additional training in cancers of the female anatomy.  And don’t be afraid to ask questions, take notes, and expect answers.  Also ask for copies of all medical reports and scans, as you go along.  That way when and if additional medical teams are consulted, you will already have a cumulative record.

1.       https://www.cancer.net/cancer-types/ovarian-fallopian-tube-and-peritoneal-cancer

2.       https://www.cancer.gov/types/ovarian/patient/ovarian-epithelial-treatment-pdq

3.       https://www.cancer.org/cancer/ovarian-cancer/detection-diagnosis-staging/survival-rates.html

4.       https://www.healthline.com/health/cancer/ovarian-cancer-outlook

Mollimouse said:

My mom also just got the diagnosis... no advice, just support

hi,

I thought I’d join in because my 70-yr-old Mom also just got the diagnosis on Feb 28 (2018), and i’m also an only child. (And one that’s failed her by making it to 34 w/o giving her grandchildren!). It happened so fast—went from having digestive issues to being bed-ridden and full of fluids within two weeks. The doctor said there was nothing to be done, but we got a second opinion and she had her first infusion of Taxol/Carbo on Friday. But i’m really worried because my mom isn’t eating or drinking, is entirely bed-ridden, and her mood is very negative. I’ve suggested meeting with a therapist or a support group but she says she doesn’t need it. i don’t know how to compel her to eat/hydrate or seek support. On top of that, my (87-yr okd/hard-of-hearing) Dad is demonstrating a terrifying inability to advocate on my mom’s behalf, or even recogniz the severity of the situation. So basically I am just posting to add my thoughts and prayers to the other on this board, offer my support any way that I can—i honestly feel that fellowship with people going through similar things is comforting on some level. This just feels like the worst thing in the world, so I want to send my love to everyone else though I can’t offer any advice! I hope for the best for all of us! Much love. 

Hi Mollimouse! I think are living in a parallel universe with our moms. My mom too was diagnosed with ovarian cancer back in January. She had the full hysterectomy and is doing 6 rounds of Taxol/Carbo (last round today). But she is only now learning the severity of her situation and is super depressed. And like you--my dad, who is so in love with her, is like a freaking zombie! I tried to push them to therapy too but they are like, "We're good." Um? To make matters even more confusing mom's docs seem to be doing a lot of hinting and dancing around this whole thing. Like I need a PowerPoint Presentation to know what is going on. 

I'm trying to gather more resources here and other places, but I wanted to reach out to you. Cuz I know how terrified you feel, plus how incredibly lonely you probably feel too. You want to fight and advocate for her but you kinda don't know what to do! In any case, keep my user ID handy--always happy to listen and offer support to you! If I find out something I'm happy to share too. Sending love to you and your mom!! We will get through this!! xo

GinaCatR said:

Hi Mollimouse! I think are

Hi Mollimouse! I think are living in a parallel universe with our moms. My mom too was diagnosed with ovarian cancer back in January. She had the full hysterectomy and is doing 6 rounds of Taxol/Carbo (last round today). But she is only now learning the severity of her situation and is super depressed. And like you--my dad, who is so in love with her, is like a freaking zombie! I tried to push them to therapy too but they are like, "We're good." Um? To make matters even more confusing mom's docs seem to be doing a lot of hinting and dancing around this whole thing. Like I need a PowerPoint Presentation to know what is going on. 

I'm trying to gather more resources here and other places, but I wanted to reach out to you. Cuz I know how terrified you feel, plus how incredibly lonely you probably feel too. You want to fight and advocate for her but you kinda don't know what to do! In any case, keep my user ID handy--always happy to listen and offer support to you! If I find out something I'm happy to share too. Sending love to you and your mom!! We will get through this!! xo

We all have very similar situations, my mother (66 at the time) was diagnosed with stage 3 ovarian cancer Nov 2016. My father who is 84 now is becoming more and more senile by the day also.   She went through her first round of carbo/tax and her CA125 levels went from 8000 to 25 and was cancer free for about 3 months.  Then on her CA125 levels started to elevate and they found some small blotches on her cat scans, so they started another round of chemo with taxol and six months later all her level were down and no signs of any issues on the scan.  My mom was very happy and seemed a lot more energitic, I was so happy to see her this way.  They kept her just on taxol to maintain and it helped for about 2 months but just yesterday we were told that her CA125 level were elevating again, so was this a another blow to the family.  The drs want to bring her back to carbo and they are going to try Doxil with it this time.  Its just heartbreaking for the family to go through such ups and downs.  Its seems that this cancer is very agressive with the way it comes back so fast.  We are going to try some alternative ways now and wanted to know any suggestions people might have.