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SCOTTIEGIRL57's Photo SCOTTIEGIRL57 Posts: 1,286
7/31/09 5:14 P

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Wonderful information "TKJBSGETTINGFIT", I think my surgeon is very familiar w/ovarian cancer. I'm sorry she doesn't include alternative medicine more in her therapy.

I appreciate your response.

K

The unknown monster under the bed is always scarier than the dust bunny reality.

SCOTTIEGIRL57's Photo SCOTTIEGIRL57 Posts: 1,286
7/31/09 5:10 P

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Acehigh, bless your heart for the excellent post. I'm getting a ct scan in August as a 3 month follow-up. I'm normally checked w/blood work every 3 months. I'm having a follow-up CT scan because of what looked like a lesion they found on my last scan. My surgeon seems to be very knowledgeable re: ovarian cancer. Tomorrow I go down and get my blood work done. I'm a bit behind schedule. I'm SO nervous about all of this.

I'm so glad you don't smoke any more. I smoked for about 4 years or so and about 1/2 pack a day. It's now been 9 months since I've stopped. It gets easier w/each month that goes by. My biggest thing there is to not eat too much. I'm sitting this morning still at 151 lbs. I'm trying to lose an additional 15 - now 16 lbs.

Welp, heading out to do shopping. Best to everyone.

K

The unknown monster under the bed is always scarier than the dust bunny reality.

CIAOBELLA57's Photo CIAOBELLA57 Posts: 590
7/27/09 9:39 P

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Kate, do you get CT scans regularly (every 4-6 months?)

AAMC is terrific in follow up and track all cancer patients for five years; the first 2 1/2 years I get a CT scan every 4 months, and then it moves to six months.

I think a PET scan is recommended if something suspicious shows up on the CT Scan.

I agree you have to be aggressive with your healthcare. I know I drive both my GP and oncologoist and OB/GYN crazy with all the articles i print off from the web or that I read elsewhere.

I was smoker for 30 years and insisted on an annual chest xray from my GP. I had one done for some other issue in Feb 2006 and it was totally clear.

When I had it done in Sept of the same year for my annual; a small mass was found in the upper left lung. I was lucky, it was non small cell stage 1A.

I cant tell you how many times the surgeons, oncologists and other specialists kept telling me how rare it was to find lung cancer so early and what made me insist on a chest xray?

Duh! I dont understand why ALL GP's dont tell their smoking patients that if they dont quit to at least get a chest xray every year.

Good luck; and keep fighting for your health; no one else is going to go that extra step.



TKJBSGETTINGFIT's Photo TKJBSGETTINGFIT Posts: 321
7/27/09 6:36 P

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Every kind of cancer has different ways to monitor if it is coming back. I found out by joining a group of researchers specializing in my kind of cancer, leiomyosarcoma. Google and check out all the information you can to find what the general consensus is, unless you have a specialist in your cancer you are being treated by, then discuss your concerns with the specialist. Good luck in your search!

Funny how easily I can respond to someone else's question but have so much difficulty using the information myself, LOL!
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Edited by: TKJBSGETTINGFIT at: 7/27/2009 (18:37)
Fill your minds with those things that are good, deserving of praise, that are true, noble, right, pure, lovely, and honorable.Put into practice what you have learned and received from Me, both from My words and actions. Phil 4:8-9
SCOTTIEGIRL57's Photo SCOTTIEGIRL57 Posts: 1,286
7/26/09 10:25 P

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In reading this thread - I've a question. My doc said it wasn't necessary for me to have a PET Scan. So - I never requested one. I'm doing well. Supposedly cancer free - Who needs one of those scans?

K

The unknown monster under the bed is always scarier than the dust bunny reality.

SWIMLOVER SparkPoints: (86,393)
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7/24/09 2:46 P

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I will be praying for you. This is a decision that you have to feel comfortable with. They are not pushy. However, they are very helpful and if you have questions they try answering them to the best of their ability. Again, this is your life and you have to make the decision that is right for you. I will continue praying for you.
GOD BLESS!
Louise

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TKJBSGETTINGFIT's Photo TKJBSGETTINGFIT Posts: 321
7/24/09 10:28 A

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You mean "wings of mercy?" Thanks for the information, it helps to know there are options. I have been impressed Cancer Centers of America is so low key, not pushy at all, just giving information and letting me ruminate on it. Thanks so much for getting me going, don't know where it will lead but I have a few weeks to prepare!

Fill your minds with those things that are good, deserving of praise, that are true, noble, right, pure, lovely, and honorable.Put into practice what you have learned and received from Me, both from My words and actions. Phil 4:8-9
KIPPY_63's Photo KIPPY_63 Posts: 851
7/24/09 12:33 A

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yah there is an air flight things called blue angels...google it.




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7/23/09 11:48 P

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I might sound like an advertisment, believe I am not but if I were you I would contact Cancer Treatment Centers of America. They saved my life. I had a rare aggressive cancer and they got all of it. They give PET SCANS and CAT SCANS and MRI's. I did not get the MRI because I just could not get myself to go into the machine. However, they other tests were very helpful. I am not sure about this but if there is not one of there Centers near you, I think they fly you to one. I am sure there are other good Cancer doctors around and good Cancer Medical Centers but I recommend Cancer Treatment Centers to anyone. They are not in my insurance plan and after I paid the out of network deductable they absurbs what my insurance did not pay. Anyway, they treat the whole person, not just the Cancer. The Cancer I had did not have a good survival chance also but I am
here and Cancer Free. Of course, with any Cancer, it can come back but I am praying and thinking it will not. Also, I am overweight so please don't believe what that doctor told you. I will be praying
that you are lead to the right place that will help you.
GOD BLESS!
Louise

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DAMISA's Photo DAMISA SparkPoints: (0)
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7/22/09 6:53 P

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I was going to mention the PET/CT scan, but that isn't necessary anymore. My doctor has not been shy about ordering any and all scans she has deemed necessary and none of them have been denied. We did have a little trouble getting the insurance to cover my BRCA test, but even that was resolved. Being educated or having a medical advocate in your corner helps. My Godsister is a doctor, so the oncologist and surgeon I have been dealing with have been treating me quite well. I would like to think that it is because that is how they are, but I am not that naive...

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KIPPY_63's Photo KIPPY_63 Posts: 851
7/22/09 12:44 P

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Hi hun...Okay...this is going to be long...but in my years of fighting this system...and it is a system... here is what I have learned:

1. Doctor's often won't prescribe scans and other tests to help determine whether cancer is present. Why? insurance companies like them to keep costs down. HMO plans often dictate these treatment/test protocols, tying the hands of physicians. (I know, its wrong.) By following HMO protocol, doc's remain off the black list which is a database that lists doctor's according to how well they stay within the HMO protocol plan and how cost effective they are. When they become too costly for the HMO, they run the risk of:
a.)An anonymous tip to the state medical board which in turn can cost them hundreds and thousands of dollars for their own defense. Most medical boards are rife with conflicts of interests... many of the people who sit on them work for or have financial ties to insurance companies.
b.)their license
c.)their job
d.)fined and reprimanded
e.) all of the above

The kicker (as if this is not enough)insurance companies are protected under the ERISA act. They are untouchable. A patient cannot sue them even though they are dictating treatment protocol to doctors. A serial killer has the right to face their accuser. A physician does not when it comes to medical boards. I have spent 100's of hour researching this...I lost my oncologist to a corrupt medical board... they bankrupted him and shut his clinic down and the patients were ultimately left to fend for ourselves... most of which were too sick to fight. We posed no threat to them... most of us were dying.

Don't believe me? Have doubts? research it... start with www.makingakilling.org

2. A good doctor will love an educated patient. When you start asking all the "right" questions, they start treating with all the right answers because they know they can't double talk you. Ignorance can mean the difference between survival and death. (I was given a 20% chance of surviving 5 years... it is now year 6)

3. Don't be afraid to put your foot down and ask for scans...one of THE biggest and most beneficial scan is the PET/CT. The surgeon who told you you are too fat to find lymph nodes is full of sh!t...these scan will light them up like a Christmas tree in December if there is cellular activity there. MAKE THEM USE THE TOOLS!!!! They can also map them with a special dye....at least the sentential nodes. If the cancer made it to them...does it matter what is beyond? in my opinion, it doesn't. One node, is one too many.

5.)If you feel you are not getting the treatment you think you need KEEP LOOKING. Get a second, a third, a fourth...opinion. Find a doc who is willing to work with you and not treat you like you are dumb... but remember...you have to know your disease like the back of your own hand. Network with either people who have information about your particular cancer type or research the crap out of it on the internet. I have had no less than 6 oncologists. I even went to the mighty MAYO clinic in Rochester, MN. I left there in tears... I believe they are all about making their own statistics look great by treating patient at high risk of dying poorly which eventually chases them away...but that's another issue.

6.) YOU ARE YOUR OWN BEST ADVOCATE!!!!! I cannot stress to you enough that you have to be willing to fight for what you KNOW you need... this is the most important tip I can give. I know you will understand this because only someone who is fighting for their life can... pick your battles. We are taught at a young age to blindly trust two types of people...one is clergy, the other is physicians. If you aren't getting the answers you need, make the decision to either keep asking and fighting for answers or move on to the next doctor. But I will say this: if you have to fight for your life, should you really be fighting your physician too?

I wish all the best in this journey. May God walk with you every step of the way... may you have peace, comfort and healing... my you find your answers quickly...and may you beat this thing into oblivion, right where it belongs.
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K.


Edited by: KIPPY_63 at: 7/22/2009 (12:52)

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TKJBSGETTINGFIT's Photo TKJBSGETTINGFIT Posts: 321
7/22/09 12:02 P

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Hi,I am switching HMOs and will have new doctors except for the surgeon who did my second surgery. There are no doctors anywhere close, certainly not my HMO or the last HMO, who have dealt with my kind of cancer, it's rare. When my Gyn (head of the dept) found out I had this cancer(leiomyosarcoma of the uterus), he cried, he told me i needed immediate surgery to remove everything around that wasn't absolutely necessary to keep. And he referred me to a larger facility 2 1/2 hrs away for surgery and staging.

I had fallopian tubes and ovaries removed and the new surgeon said afterward I was too fat to see lymph nodes so he didn't test any-the biggest reason for me going to him! He also said he needed to get out of my surgery because a teen girl from a car accident needed him immediately (there are hundreds of surgeons available here!). He reassured us he was sure I had no remaining cancer and my survival odds were 85%. I would not need any chemo or radiation. We believed him. In my post surgery checkups I have only had pelvic exams. No blood tests, no scans.

Now I have done my own research via internet-yea, I know they hate that!-and have joined a Sarcoma Alliance group of the leading edge researchers, patients, families and friends. My 5 year survival rate is 45%. Other than tx given immediately after the first surgery to remove the cancer, there are few treatments that have any effect on the cancer and it usually returns in the lungs, liver, brain or sometimes it's found that it had spread initially to the bladder or rectum years after. The only way to check for it is scanning of different sorts. Radiation can actually make it grow (?!!) so xrays aren't recommended.

How do I get the scans done to check for it when the oncology surgeon isn't ordering them? How do I get further tests for continued discharge with no known source of origin-doctor said it was just my body getting rid of stuff from the surgeries 1 1/2 years ago! Do I confront him with the real survival odds and the information from the research group? Is it worth it to push for this if the odds are so low anyway, how do I know? I'm just full of questions and don't know which ones to act on, with who, or how. I really need some guidance here. Thank you in advance, don't know what I would do without sparkfriends!

Fill your minds with those things that are good, deserving of praise, that are true, noble, right, pure, lovely, and honorable.Put into practice what you have learned and received from Me, both from My words and actions. Phil 4:8-9
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