Follow up to mother's OC

[petunia0580]

Thank you to all the women and their wonderful advice.  My mother did call the best GYN Oncologist in the city and got in!  She and my dad will go tomorrow and I will go too.  My brother is encouraging me to push for her to use him for the treatment - she can be quite stubborn and stuck in her ways so it will be a chore but I think she is seeing she has one shot at this and better get the best.
Please tell me what questions we should be asking....I will have a notebook to take notes and I think she will let me ask questions....
Thank you

[petunia0580]

Thanks, I will do a follow up next week and name it "follow up with my mom" or something so you know it's me.  You have all been so helpful....so kind to worry/help about others when you are going or have gone through such an ordeal.  It helps to ask those who have been through it so you know exactly what's happening.  The doctors tell you so little.  
The thing that bothers me most is nothing was said about prognosis....I wanted the doc to say " this seems doable....she'll be okay"  or "with her age (74)this is slow growing, we can do this".

[rmarie]

I am glad it worked out well for your mom with the Gyn/Onc, I had a feeling it would.  Glad to hear she has an early date for her surgery.  The CA 125 is a blood test that indicates whether or not it is cancer, it is a marker.  With treatment it will go down on the chemotherapy.  Is she having a combination of chemotherapy IV and into the abdomen?  I never had a CT scan done, the transvaginal ultrasound showed the OVCA beautifully.  The CT would be done to look for spread outside of the abdomen.  Keep us posted and as you know we are here to answer questions and give support.  All my best to your mother, she is lucky to have you and your dad.  
Marie

[lillmisstn]

My thoughts and prayers are with you & your mother .. .She is blessed to have you there by here side ... Remember laughter is good medicine too, anything you can do to help take her mind off of it will help break things up for her ...and you :)

blessings

Mitzi

[SimplyStar]

Thank God your mother is getting fast action on this.  Never put off till tomorrow , what you can do today. She will be home for Christmas and recovering from phase one of this disease. Let her do what she wants to but don't let her overdo it. In 2 weeks post op, she should be up and feeling fairly well.  Her CA125 does show that it is elevated but no staging can be done until the path reports are in and the doctors actually look to see what is involved with the cancer.  Daughters CA125 was 864  prior to surgery and she was stage 3 because it was attached to the bowel.  I am not even going to be home for Christmas this year  but I did put up my in house decorations. Would seem like a shame to me not too.   "Old folks kinda get set in their ways"   lol  Lots of luck to all of you and especially your Mother.   Marty  

[petunia0580]

Thank goodness we sought out an OBGYN /Oncologist!  The regular OB that was going to cut on my mother didn't even have a CT scan of her ovaries!  He didn't do a chest x-ray, other lab tests or ask for a colonoscopy.  I am so angry.  

The Dr. we saw today is in a group of four really great docs.  She said her CA125 is 1900 - tell me what that can mean...
She will have surgery on Tuesday and chemo will go into a port in her abdomen if the doctor can get all the cancer.  I just read about this practice and the success rate is higher doing this.   She did not mention any sort of prognosis but she did say she's in at least stage IIIc but " but so are most people by the time it is caught".

Any light that can be shed....
Angie sort of laid it all out, how it will be.  I had the audacity to suggest to my mother we could "put off" Christmas....she refused that all together.  In fact my dad said he is putting up Christmas decorations (which is like Donald Trump preparing a gourmet meal - just doesn't go together) --so we will do that together.  

[Angie_Lou]

Although the nurse said what she did, it is the doctor that you need to listen to regarding the CA125 blood tests.

Can't comment on the nausea, as it was not a symptom of mine.  Everyone's symptoms have been slightly different.  But, do tell the doctor tomorrow.  And, yes he will kick this thing's butt as hard as he can!

My best, Angie.

[petunia0580]

You women really are amazing....rmarie and Angie, thank you for taking the time to care.  
rmarie, anything positive you can say helps....
Angie, good advice, they did take a blook test Tuesday - I'm hoping that was the CA125 - the nurse said "it did not look favorable"---what does that mean?  what can they tell but that it IS OC?  and If I can get my mom to take supplements I will definitely ask.  I would take them for sure but she is a different generation.  I am so sick to my stomach and so nervous what the doctor will say.  My mom told me tonight she has been nauseated for about a week and that added another bad symptom to her list...does that mean it's worse??  I just want the doctor to look at us tomorrow and tell us he can kick this thing's butt.

[Angie_Lou]

Dear Petunia,

I'm so happy your mom is seeing the gyn/onc tomorrow.  When my sister & friend went with me for my consultation, we basically listened to what the doctor had to say and asked questions as we went along.  It really depends on what surgery your mom's doctor will tell you he/she feels is necessary based on the C.T.  If he/she is as good as you say, this doctor will explain everything from what the procedure will be, what he/she plans to do, what he/she will not be able to do and the whys, how long it will take and how soon she will be put on treatment, etc.  If the doctor throws words out at you that you don't understand, that's when you ask what it is and for him/her to spell it for you.

The doctor will most likely explain the type of Chemo he/she will start your mom on if it is OC.  Again, ask the doctor to spell them for you.  They usually are Paclitaxel (aka Taxol) and Carboplatin (aka Paraplatin.)

You may want to ask if he will take a CA125 blood test before surgery as the baseline or if it is done after surgery.  I don't think my doctor did it prior to surgery, but she did have one done as a baseline prior to me starting Chemo.

Her doctor may say that he will have a port put in so that it's convenient for her to receive her Chemo thru the port rather than intravenously through her arm veins.  If he/she does, ask where it will be entering her body.  It's usually put in the chest area and some doctors do it at the same time as surgery.

If he/she says this his/her normal procedure, ask if he/she will be the doctor putting the port in or if another specialist does that.  I did not have a port because my doctor felt it was invasive enough for the surgery I required.

However, if I couldn't take the drugs intraveneously, then she would have had a port put in later.  My veins were good and I did not have a port.  Again, it depends how often your mom will receive treatment.  Mine was once, every third week for 6 sessions.

Because of your mom's blood pressure, etc, let the doctor know exactly what medication she is on (take them with you) and ask how her medication will interact with her Chemo and if she can continue taking them before or after surgery.  Usually, it is the anesthesiologist that will tell you exactly what she can or cannot take before surgery.  I think it's mostly medication that can thin the blood that should not be taken for a week before surgery.  And, maybe vitamins & other supplements; again because of blood thinning factors that some vitamins & supplements may have.

Very important: she may need blood while in surgery.  If her own blood can be drawn before surgery, ask the doctor how much blood she could possible need and how much of her own blood can be drawn for her surgery and how soon prior to surgery should she have her blood drawn.  I also suggest that if you, your dad or brother are the same type, give blood for your mom's surgery.  Don't let them give blood from the blood bank.

Re blood; I know all the hospitals are suppose to be careful when screening the blood placed in the blood bank, but I needed four pints during surgery (I have an anemia) and two pints after my Chemo sessions were done.  Oddly enough, I contracted Hepatitis C and the hopital won't say that it came from their supply.  Go figure.  It doesn't do anything bad to me, I just need to keep my liver healthy.  But, I'm real skeptical about blood banks, even though I go to a top notch hospital.

Now, what seems like a stupid thing but it isn't; your mom will not be able to climb stairs for about 6 weeks.  If the bathroom and kitchen in her home are not on the same floor as her bedroom, ask the doctor if he will sign an order for her to get a hospital bed at home.  If he doesn't and her insurance still will not cover it, I suggest you still contact a medical supply company get her one for at least a month (rental is by month) so that she can climb out of it easily.  She'll be in pain and using the control to the bed to lift my back up really help me climbing in and out of bed (and I'm only 50 yrs old.)  You and your dad will have to rearrange the house a little, but it will really be so much better for her.  Don't let her be stubborn about this.  She cannot climb stairs, especially if she is having the full hysterectomy like I did.

If the doctor doesn't tell you, ask how many days after surgery will he/she receive the pathology report.  Usually the follow-up visit is after the doctor has received the pathology report and that is usually within a week.

Also, ask how soon after her follow-up visit will he start the Chemo.  It just depends if the doctor's clinic is located in the hospital.  They usually like to be around (that is, not in surgery) when their patients are receiving Chemo.

Lastly, ask the doctor if she/he will object to any supplements.  I have a little list of supplements I took while on Chemo to keep my body healthy and my doctor did not object to any of them.

At the follow-up visit (after surgery), the oncology nurse will also speak with your mom and give her some information on what to expect while on Chemo.  So, after the surgery, please come back and let us know what was done so we can help again with the next phase of this.  I will also list the supplements so that you can ask the nurse/doctor about these.

Good luck tomorrow and do not be scared by anything the doctor has to say.  Just don't leave the doctor's offfice until every doubt in your mind is gone.  He/she is there to save your mother's life and he/she want you all to feel comfortable with what he/she will do for your mom.
Angie

[rmarie]

Does she have her records from the other Gyn?  If not see if you can get them on the way to the office, it will save time.  Or contact the place where the scans were done and have them send the reports.  I can't think of any questions at the moment, anything would be driven by what the Gyn/Onc would say.  What does he believe it is, that is why you need the records.  How soon could a fairly definitive treatment be started started, would be high on my list.  Hopefully he will inspire confidence in her.  If she does need chemo he would be the one that would be doing it.  She would need a Gyn/Onc taking over the surgery, so she might as well start out with the right surgeon.  I don't think I helped much, however you mother took a giant step by making the appointment, that is a great step on her part, she may have already decided.  Please keep us posted.