In Need of Some Positive Feedback

This past Friday my mother was diagnosed with ovarian cancer by her ob-gyn.  She is 73 years old and relatively healthy.  Her doctor got her an appointment with a cancer specialist for Monday morning, and she cancelled it.  She is refusing to do anything about this and the rest of the family is having a really hard time with that decision.  Her position is that right now she feels ok and she doesn't want to go through chemo and surgery etc.  to only feel real bad and then die from it all anyway.  She doesn't have a computer, but I told her about this forum and said I would print out and send her any information I can get for her.  She doesn't know anything about the cancer as far as how spread it is or what kind exactly.  The doc told her she would probably need a hysterectomy.  But as I said she is refusing to go any further to find out anything.  If anyone could send me some positive info to relay to her I would greatly appreciate it.  I'm not ready to lose my mom yet.  Thank you.

[turtledovemom]

donnalee...
I'm so sorry to hear about your Mom's diagnosis.  It's certainly a painful time for her...and for your whole family.  If I'm reading your post correctly, your Mom has not had her disease staged yet.  The good thing is that her doc is sending her to someone who specializes in oncology treatment.  

If you take the time to scroll down and read the posts below yours...go down as far as you can...you'll find that the women who post here are in all different places as far as ovarian cancer goes.  Some are waiting for their surgery...others have come out of it clean and others have been diagnosed with the ovca.  You'll see that there's a tremendous amount of sharing that goes on here.  The women who share their experiences with the others who, like yourself, come here seeking answers or support are met with a tremendous amount of patience, compassion and experience.  We're not doctors (although there are a few health care professionals here), but we've been around the block more than a few times.

As far as your Mom putting the brakes on seeing the specialist...well...if it were my Mom, I'd ask her what she'd expect me to do if I were in her shoes.  No doubt, she'd want you to fight with all of your might to conquer the beast.  Sometimes if you put things in another perspective, it shakes people up when they're faced with something like this.  Remind her that the entire family will be experiencing this with her...although not in exactly the same ways as she.  Remind her that you need her to be with you...as selfish as that might sound to her.  If you can get her to the specialist, I'm pretty confident that he or she will be able to direct you to other support services that will put you all in contact with others who can be of assistance with this.  In the meantime, I'm sure that more of our members will be here to share their thoughts with you.  My thoughts and prayers are with you all.  Please keep us posted and let us know how we can be of help to you and your Mom.
peace,
Anne

[Gatsby]

I am so sorry to hear about your mom's dx.  There is a poster here, ConcernedInNY, who has gone through this with his mom.  She is in her 70s and has just finished her chemo. She did really well.  Just check the archives for any posts by ConcernedInNY and you will see his story with his mom from beginning to the end of her chemo.  Like I said, she did really well.  Unfortunately, all you can do is be there for your mom and support her.  She really needs you at this time.  You and your mom are in my thoughts and prayers.  Godspeed
~Tascha

[Rebel Spirit]

Actually, I don't see how the ob/gyn diagnosed her with ovarian cancer. They don't know for sure until they do the surgery. If she hasn't had any surgery to remove the tumor and stage it, it may only be a cyst of some type and not cancer at all.

[gah_70]

I agree with Rebel Spirit's response.  There is no way to diagnose OvCa without surgery to take a biopsy.  Does her doctor "think" she has OvCa?  If that is the case, then there is absolutely nothing to lose by having further tests.  Perhaps if it is OvCa, it's at an early enough stage that nothing other than a hysterectomy would needed.  Sure, recovery for a hysterectomy is nothing to sneeze at, but it would be better than having to follow it up with chemo.  I agree that quality of life is just as important at quantity of life, but I wish there was some way to convince her to at least see the specialist.  OvCa does not have to be a death sentence!!!  My thoughts and prayers are with you all as you digest all this.  Perhaps after she has a couple of days to let it all sink in, she'll change her mind.  I hope so.

Best of luck to you all.

Gail :)

[fungirl]

I too am sorry to hear that you and your mom are going through all of this.  I agree with Gail though, I do not see how she can have dx if nothing has been to a pathologist.  Hopefully you can get your mom to a doctor and find that it is only a cyst, or if it is ovca, then in the very early stage.  Just know that we are here for you and your mom anytime you need us.  Kasie

[milashka]

I was like your mom, head in the sand approach, but only in my mind, my body ended up going through the motions. I thought, I am 42, had a great, healthy life, I have no kids, no ties, I am outta here, so long, it's been great but I'd rather go out healthy than endure years of chemo.

I did the surgery because my tumors were very uncomfortable and prevented me from eating so I was cool with that. 3 weeks later I started on the chemo the principle of which I did not agree with (poison the whole body to maybe kill the cancer - that is medival!). My dad said: give in ONE try. If you can't bear it, stop, but try at least one treatment. I did. It went well. I made it through all six and they were not bad. In fact, I have not met anybody in my chemosuite that suffered greatly...there were some blood problems, delays, but noone was terribly ill.

I am back to normal 3 months after chemo and 9 months after surgery.

Without surgery I would be dead now.
Without chemo I would probably be back in pain now and dead soon.

With the surgery and chemo I am able to enjoy life, watch the world cup, swim my heart out, laugh, work, LIVE. For how long I don't know but hey, I am fine NOW. No regrets at all.

Oh and don't let age be a factor. A good friend of mine is 71 and has been in remission for 4 years now (surgery, chemo plus 12 months maintenance chemo).

My plea to your mom: Please give it a try!

Good luck, best wishes, keep us posted!

Dagmar, stage 3C November 23, 2005

[MickeyVicki]

Donnalee,  your mother really needs to speak to the gyn oncology specialist.  Obviously, the specialist is the one who can best outline for her the options that she has for her condition, depending on what that condition is.  Only the specialist can tell her that particular information anyway.

  And, in the event that she does not choose to avail herself of any treatment options, then the specialist will also be the best choice to help her control her symptoms to maintain a decent quality of life,  and  later to assign her to hospice care when it is most appropriate to do so.

[RavenLady]

Hey Donna, Welcome to the Forum and when can your Mom assemble for the severe Headslappin she is asking for?  Teach her to get on line Donna and tell her she and I can meet here or the BBB.  MV

[OreTex]

I reread your post and I'm sorry that my first response was more about me than about you....cancer sometimes puts blinders on us.  My mom is very healthy except for the cancer. One thing you might use (this is manipulative, but still...) to get your mom in for more info is to ask her to find out if she carries the BRCA-1 or -2 mutation as that is crucial information for your own health.  

She feels perfectly healthy now, but as we found out from my mother's oncologist that can change very quickly.

[Silla]

I really don't agree with both of u. I went to GYN for pop which was normal but I told him to do more test 'cause I had irregular period and bloating, he performed an Ultrasound and when he saw something (kind of tumor like) he sent ( a sample) the test to the lab corp. At that moment he couldn't tell me much, 'cause he was not sure. But he called me after he got the result. That's how I found out my diagnisis. He refered me to GYN/Onc afterwards, but he was deponding on the lab result sent by my Gyn doctor. He didn't relly tell me anything knew regarding the dx. When I asked him the extent of it, he said he will know after the surgery. ( but guys, it doesn't make sense, they doing the surgery ,hysteroctomy.... without knowing much, location, size, what to to remove or leave etc.)What I mean is, there might be no need to do complete hesteroctomy, 'cause they take it out and if they find out it was only partial removal, they cannot put it back once they took everything during the surgery. It is kind of too late. When I ask him what he is going to do on my case, he said Hysterectomy and he will know after he do surgery or after he takes the Cervix out. And once he takes out he cannot put it back. But look for those who are single hoping to have kids... it is like double Jeopardy. That is my understanding after I questioned him what or how is he going to do it. But I don't understand how they remove partial or total.
Right now am concerned about the treatment to get rid of the beast, but at the same time we don't want unnecessary removal of the whole thing, don't know how they do it. What do u think.

[gah_70]

I believe I remember from your posts last week you said you were diagnosed with cervical cancer or dysplasia.  Pap Smears detect abnormal cells associated with cervical cancer (among other cervical problems), but not ovarian cancer.  The only way to dx ovarian cancer is through a biopsy of the mass itself, which requires surgery.  Until a gyn/onc gets in there to look at the extent of the damage, how much it has spread, size of the mass, etc., he or she cannot tell you difinitively whether you will have to have a complete hysterectomy/oopherectomy.  I was 35 last year at the time my ovarian cancer was detected.  I am married, but no children.  I had no choice but to get everything removed.  It was fertility vs. my life, so there wasn't even a question about it.  Hopefully, yours was caught at an early enough stage that it has not spread beyond the cervix so a complete hysterectomy will not be necessary.  But again, until a doctor gets in there and looks at it with his/her own eyes, there is no way to tell.  Timing is important, here, too.  You don't want to give it a chance to spread any more than it already has.

[Silla]

Am really confused myself, 'cause when I was first dx my GYN doctor told me that I have CV. The 1st state of Endometrial Adenocarcinoma, that's what he called it. I was not given that much details but he said I need hysteroctomy. I was not satisfyed with the answers/options, and I went to do MRI on my own. He was mad at first, 'cause I didn't tell him that i was going to do. I was just trying to find out the extent of it, cause he told me to come in a couple of month, so I was curios about the timing and extent. Anyway to make the story short, the radiologyst was helpful and he showed me the screen (pictures taken) immediately. He said that it is located in the right ovary. He couldn't explain anything,cause he was just a radiologyst and told me that am going to hear from my GYN doctor. I called the doctor to find out and he said that it is the same, meaning nothing new as compared to the lab report. He was not helpful from the beginning 'cause I don't have insurance.  I don't follow up with this doctor cause he is wasting my time, scheduling me in 6 weeks for consultation. Plus, I forgot to tell u, he told me that he could perform C & D in 6-8 weeks till I get insurance. Waiting over a month for C&D ? I would have done it if it was rideaway but now , no, and what is gong to do to me? I know it is kind of late for D&C,He is just trying to make money. Mind u, He has already started billing me for consulatation, before any procedure is done. No recommendation was provided either as to where to seek for support. Now, bottom line is, what do u guys think,  CV or OV,?. Regarding the removal, don't really have a choice, I will do what they say. Am just waiting for a miracle to happen, meaning how am I going to take care of my problem. No help, so far. Thanks all.

[gah_70]

Silla, I am going to start a new thread about this.  I don't want to totally "hijack" Donnalee's thread.  

Speaking of which, Donnalee, have you been able to speak to your mother about any of this since you last posted?  Please keep us updated.  I really hope things work out in the best possible way they can.

Gail :)

[OreTex]

My 84 yr old mom did have a biopsy, but it was crystal clear from the 3 CT scans that she had major metastatic cancer of some sort. The gynocologist who diagnosed her said, essentially, that it wouldn't really matter where the primary site was. The transvag u/s showed a completely normal uterus, and a mass that he was 99% sure was ovarian but admitted could be something else. Rather than put her through a surgery, he ran a CA-125, and when it came back 7889, he felt that was pretty darn definitive.

Mother elected to go through the chemo, knowing that it would be palliative (it would only shrink the tumors, deferring her death). She will not have debulking surgery, as the disease was so advanced that the oncologist felt that recovery from an open abdominal surgery at her age would cut into "quality of life" issues when the remaining time is probably a year at best, even with treatment.

The oncologist made it very clear to mother that she would keep her comfortable whatever choice she made. Maybe your mom will think privately about this for a bit, then elect to get the complete picture.  Best of luck

[Tybear]

Give your Mom a little bit of time to digest what she's just been told. My therapist in the oncology department says once we are told we have cancer, we go into shock - it's a tough thing to accept. Until your Mom accepts her diagnosis (which , I agree, can only be given by a gyn/oncologist) only then will she decide to move forward with treatment. On the other hand, if this is what she really wants, you have to support her. Try to get her to meet with an oncologist and ask her to make her decision after that, once she's a little more informed.

[kathy o]

If your Mom has ascites they can test it for Cancer, that is how they knew mine was ovca also after high ca125 and ultra and transvaginal scans. Ascites is the build up of fluid in your abdomen. Thinking of you and your MOM
Kathy