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Avatar universal

crazy making and scary

Hi ladies, I read the posts here and on a couple of other message boards and I'm so confused. Amost 2 years ago, after my debulking surgery and staging of 111c,OVCA with mets to lymph nodes, my Gyn/ONC Surgeon had recommended me to a group of Medical Oncologist/Hematologists. I've been seeing one doctor in the group and I've been very happy with the patient, concerned care he's given me. I've had Carbo/Taxol, only a 4 month remission, and now Topotecan for 5 months. He's always been honest and told me there are lots of chemo drugs, and he expects me to be on several of them as time goes on. If I bring  him an article re a new cancer treatment, or drug, he's aware of it and discusses it with me.

The thing that I find scary, and makes me crazy, is when I read the posts saying that everyone who has a female organ related cancer, should ONLY see a Gyn/Onc. because they are up on all the advances, and their patients have a longer survivial rate.
There are also suggestions to go to a major cancer center for the best treatment.

You only get one chance to do this thing right, and we want to make the best choice for our treatment, and sometimes I think that maybe I should be seeing a Gyn/Onc for my best chance at a longer survival.
I'll appreciate your input very much, thanks.
Jane
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Avatar universal
Hi Dian, My oncology nurse is aware of the surgeon's exam, and said he's got a reputation as an excelent surgeon, but probably wants to check out the tonsils while he's doing the follow up exams.
Gee, my oncologist and his group are also hematologists, I'm in NJ and how weird would it be if we, no it can't be!
I'm glad I gave you a chuckle today, we don't get enough of them. Someone on another website had said "You know you're getting older when the only entries in your address book, are the names and addresses of docors." I said how about the only notations on your calendar are doctor appointments!
Back at you about the New Year, have a healthy one.
Jane
Helpful - 0
Avatar universal
Your last post put a smile on my face......some of those pelvic exams are awful.....I finally told my gyn he'd have better luck cleaning my teeth if he went in through my mouth!   And, I guess I never thought of it before, but....why have a gyn/onc for future surgeries if, please God no, that monster returned ?  Get the proper specialist....no duh!
Any way....thanks for the chuckle.  By the way, I had a gyn/onc for the surgery and then was referred to a hematology oncologist for chemo .
I hope the New Year treats you right.
Peace.
dian
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Avatar universal
My Dear,
I am so truly sorry for the loss of your dear Mom, I lost my Mom to heart disease 24 years ago and I still miss her so very much. She was my best girl friend and I understand your pain. I also understand your grief at having wanted better care for her, and more timely testing, there's no excuse for the doctors or nurses not listening to you, but that's in the past and you can't go back and redue the mistakes of the past. I was misdiagnosed, told by my former internist that my 4 classic OVCA symptoms were side affects of a medication. This went of for 6 months, until I had a routine GYN exam, where a cocoanut size mass was felt.
My only saving grace, is knowing that some day my Mom and I will be together again and that gives me a feeling of peace.
I had a dream a few months ago, that she, and her parents came to my bedside, they were in white shrouds and all smiling gently, and she said it's time to go.
I'm a fighter, so angry at this disease that has invaded my body, that I know it's not time to go. It's time to fight like hell to stay here.
Please let the memories of the wonderful times you and your Mom shared, take over the sad memories, as time goes on.
Be well and have a healthy year. Jane
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Avatar universal
Ladies, thank you for your replies, I'm no longer seeing the Gyn/Onc surgeon who did my surgery. He did a wonderful job and his waiting room is always packed with women from all over the Northeast who travel for his expertise in surgery. He was honest with me when the cancer came back in several lymph nodes on major blood vessels, 4 months after my remission. He told me that surgery could kill me, I could die on the table, because it was so dangerous and he recommended I restart chemo, which I did.
I've stopped seeing him because of his bedside manner, giving me no hope, telling me I know what the final outcome will be, etc. Also, his pelvic exams were extremely painful and I began dreading his visits. My oncologist said since I no longer have any female parts, there's no reason to expect to have him do any future surgery. I believe he said that future surgery would performed by a specialist in the particular organ involved.
Thank you both for your advice and help, and Shewrites, I needed that "shake by the shoulders!" Jane
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Avatar universal
Dear Marty,
First let me express my deepest sympathy on the loss of your beautiful daughter, Leslee. I just looked at your pictures and now I can put a face with the name of the brave lady who fought so hard against her cancer. I wish you peace in your memories, and I shed several tears as I followed your posts. G-d bless you for the support you gave her.
Thank you for your post to me, it actually calmed me and I understand where you're coming from. Today, before chemo, I discussed an article I had read, with my oncologist. The article was about how some cancer patients receive doses set for "ideal body weight", not taking into account the true body weight of the patient. It went on to say that obese patients, (I'm one) don't get doses which could actually extend their lives because they are underdosed. He listened to me, read the article, and explained to me that he was aware of this finding, but he's giving me the greatest dose of Topotecan he can, because my bone marrow reacts to this dose, requiring and Aranesp injection and giving me a larger dose would put me at greater danger of bone marrow damage.
I trust him, and I will continue to have him treat me, until he suggests I do otherwise.
Thank you for your information, and advice.
Jane
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Avatar universal
To fight cancer and stay alive one needs to be strong but to let it go , getting ready to leave your loved ones behind and preparing for the unknown is a show of even greater strength . Dying and giving up is not weakness for it requires more strength than trying to live alone .
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Avatar universal
My Mom went to City Of Hope in Duarte,Ca. They were supposed to be the best,cold,uncaring,for the most part,but the best.She had a different doctor for everything,her heart doctor,her pulmonary doctor,her gyno/oncologist,for surgery only,Dr.Linn was wonderful,even called me after my mom's passing,went out of his way for her.Told me,that this really hurts with tears in his eyes.He is how all doctors should be,very rare in my opinion.He still checked on her,even though surgery was no longer an option for her.Her chemo doctor,not nice,nurse even worse.They gave up on here way before I did,or she gave up on herself.We beat it together the first time,they were shocked and wanted to now what herbs she was taking to suggest them.But the doctor let her go for 3 months.She had started to lose weight,not eating,etc.I begged,our primary doctor and my Mom for an early ca-125 test,ct scan,anything,they refused.In my opinion they failed her.Has anyone ever noticed the doctors seem to give off the impression that an ovarian cancer diagnoses means thats it?Not so after reading some of your ladies posts.My mom was stage 4.
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Avatar universal
Hi Jane

You're not a statistic, so stop that!  

Seriously, I think my gyn/onc is a terrific surgeon and he has a good "bedside manner," so I keep going to him.  But I'm guessing that what he does for me on an ongoing basis could be done by his nurse.  (Hey, you're looking good.  Quick pelvic, order the next blood work, tell me when to come back.)  

If your medical oncologist seems up to speed, you were referred to him by the gyn/onc, and you have the gyn/onc as back-up, I see no problem.   Come to think of it, if the gyn/onc specializes in surgery rather than patient care, you're probably better off with the medical oncologist.  
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Avatar universal
Hi Jane,
Marty is right. There really is not a cookie cutter approach to this disease. One of the main reasons a gynonc is so important is for the debulking surgery. They are skilled, experienced and not afraid to cut out as much cancer as possible. You had that for your surgery. Because your gynonc referred you to the medical oncologist, I would think you are in good hands. Maybe you could discuss this with the doctor who made the referral. It could be that the 2 groups work hand in hand. Best wishes!
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167426 tn?1254086235
To be brutality truthful  there are those women that have the best  doctors and the best hospitals, that still lose this battle. Since all women are different , so are the cancers all different, even though they are all classified Ovarian, some chemo drugs work  well for some and not for others,  some of these women have been on continous chemo for years, some have short remissions and others have long ones.  there is no norm in this disease. You and your doctor know your body best and that is what guides you through.  There are many chemos and more coming out all the time, but until someone finds a cure,  the fight goes on. It does no good looking at the stats, because you will be unable to see just where you fit.   Marty
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