Had my last chemo today, great, now I go for a scan that tells me if it's all gone.
Now my doctor, who on my first visit told me I go do these chemo treatments, they're a pain in the neck but once they're done I can just come see him a few times a year for checkups, sounded good. Today he explains that this is a chronic condition, even if it all comes up good I am just in remission and it is likely to come back. He wants me to do take part in a study where I get a different chemo treatment once a month for 12 months, said it will increase the amount of time before the cancer recurs.
I have to check if my insurance will cover this or not, they are looking into it and will let me know by the end of the week. Then I have to decide if I even want to do this. It took an hour of discussion for him to finally say I don't have to do it, I can just come in three times a year for checkups, but that he really recommends doing this,. They know the drugs make it stay in remission longer, this is testing for better ways to reduce the side effects and improve quality of life. One is a greatly reduced dose of one of the drugs I was already taking, so I know how I react to this one, the other one is a newer version which increases the remission period a bit more and has fewer side effects. I could also end up in a group that does nothing, just comes in once a month and gets checked, which is good in that they will find anything sooner.
Then he explains how there really isn't an accurate test for ovarian cancer, theres the CA125 blood test, which he calls garbage, there's the Pet Scan which shows hot spots which may not be cancer, the Cat scan which shows spots again can't verify it, an ultrasound if you have anything like uterus and ovaries to check, but I don't anymore. I was getting really frustrated, he said they'd do the scans and blood work and if they came up bad, do a biopsy and start treatment again.
On my first visit, the doctor told me "dont' put yourself in the cancer group, you're not part of that." Now he's telling me I have a form that never goes away. I guess I'm glad he didn't tell me at the beginning, coz now I've been through this and know I can do it again if I have to, and won't be as freaked as if I hadn't done it, but this was a big shock. My mom kept trying to tell me this, but I said that's not what my doctor told me. He just didn't tell me til now. No wonder my mom has been so darn freaked out.
Check out my site at http://susieed.tripod.com/
Thanks, Sue Edelmann
1|1|SO SORRY TO READ THIS SUE|tonyas30|tonyas30@hotmail.com|19:43:00|04/19/2010|
I'LL BE PRAYING THAT IT DOESN'T COME BACK. I KNOW HOW YOU FEEL. WHEN I STARTED CHEMO LAST YEAR, I WAS ASSURED THAT IF I DID IT, MY 5 YEAR SURVIVAL RATE WAS IN THE 90 PERCENTILE. HOWEVER AFTER I STARTED CHEMO AND THEN ENDED UP IN THE HOSPITAL AND STARTED REALLY RESEARCHING MY TYPE OF BREAST CANCER AND TALKING TO OTHERS I FOUND THAT MY TYPE OF BREAST CANCER - TRIPLE NEGATIVE HAS A VERY POOR PROGNOSIS. AND THEN I GET HIT WITH HEY YOU ARE STAGE 4. MY DOCTORS DIDNT EVEN TELL ME THIS. I GRABBED MY FILE ONE DAY WHILE GETTING CHEMO AND WAS FLIPPING THROUGH IT AND THERE IT WAS METS, STAGE 4. I STARTED SHAKING AND SHAKING AND HUBBY AND I JUST COULDNT BELIEVE THAT WE WERE NEVER TOLD, SINCE WE'D SEE THE ONCOLOGIST EACH TIME BEFORE THEY LET ME GO BACK TO CHEMO. I JUST TRY TO STAY POSITIVE, AND TRY TO STAY BUSY. ITS HARD. CANCER SUCKS.
~The only way to have a friend is to be one ~
2|2|Hugs and Blessings to both of you ~|petunia1|sweetpea39@comcast.net|20:53:10|04/19/2010|
So sorry you both had to go through this, will continue to pray for you.
Sue, sounds to me like the Doc was trying to talk you into doing the study, it's hard but you have to do what you feel is right for you.
3|1|(((Sue)))|sunriver|lithiasalt@cheerful.com|10:25:56|04/20/2010|
You are such a strong lady! Hang in there! 4|1|I'm so sorry sue :(|kandywolf|kandywolf@gmail.com|10:57:20|04/20/2010|
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
-{-<@ Have we traded? @>-}- ~Please~ leave feedback at this link:
http://www.refundsweepers.com/dcforum/feedback/78.html
TY!
~Please include RS username in emails. If you do not have a username, I WILL NOT trade
with you. Tired of lurkers taking advantage of people, if you really want to trade, you will
sign up at RS with a username!~
~If we have not traded before and you have no feedback or 5 or less feedback you will
need to send your end first. Sorry but this is my new rule. TY~
~I am now giving 36 hours from the time I email someone about a trade. I am losing too
many trades waiting 3 or 4 days, and then they decide no, or dont let me know at all.
Sorry, but I can't wait longer than 36 hours, I believe that is more than fair~
~ Shipping from Zipcode 18201 ~
~~Thank you everyone for all the wonderful trades~~
~~ You are the BEST!! ~~
5|1|Sue, I read your post last night and have been thinking about it.....what your doctor did was unethical...it is your body, your decisions, and you have the right to full disclosure on your care and your disease process....if it were me, I'd call him on it. I am so sorry you were not treated with the dignity and respect you deserve.|saint6811|waylan@comcast.net|15:54:56|04/20/2010|
" You'll get what's coming to you ... Unless it was mailed."
6|1|I'm so sorry Sue. I agree wholeheartedly with our resident nurse. It is degrading tro find these things out later. Perhaps he thought he might spare you the worry? With regard to the study, shouldn't whomever is running it cover the cost of meds and follow-up care related to it like scans, blood tests, etc. |Sara_s_Mom|IClipCoupons@gmail.com|17:27:56|04/20/2010|
Earn swag bucks toward Amazon codes and more! It's super easy! Ask me for more info if interested. Please use this link to join, or email me for an invitation. http://swagbucks.com/?cmd=sb-register&rb=58333
Also: Mysearchbonus.com - earn points for searching, redeem for gift cards. Lots to choose from! I just learned about a new search engine where you get 1 point per search (natural searching....) and once you hit 1,000 points, you can cash out for a $10 gift card. Just another great money making opportunity for searching the internet!
Here's my referral link if you are interested:
http://www.mysearchbonus.com/?p=join&rid=c878cb22180e1c72ec3acff2d421688c
*************************************
Check out my blog - Making Ends Meet: Living On One Income - for posts on money saving tips! http://livingononeincome.blogspot.com/
Money woes? Associated Content pays writers for content. Curious about what kind of articles AC will pay for? Take a look at my articles at the link below. If I can do it, so can you! Please email me with questions, I'll be glad to help! http://www.associatedcontent.com/user/72250/carly_hart.html
7|2|Good point, Caren.....if it is a study, why should you have to pay to be a part of it? Study groups get grants for this kind of thing, don't they?|saint6811|waylan@comcast.net|17:49:21|04/20/2010|
" You'll get what's coming to you ... Unless it was mailed."
8|3|The studies I have seen pay the participant.|Arizona|vbj48@cox.net|18:01:47|04/20/2010|
Here in AZ, medical companies are always advertising for people to participate in studies on various medications and ailments.
They pay for all the tests and medication in addition to paying for the participant's time.
I have seen several of these studies that pay several thousand dollars for time and travel. 9|2|They were very specific that it is not paid|dragonmom|sueedelmann@yahoo.com|18:12:38|04/20/2010|
All treatment is billed to insurance, there is no payment for being involved and the treatment is not free. I am waiting to hear on my insurance company on this still. Sounds like they will pay for actual treatment, but not for anything part of the research (ie. extra tests not related to treatment, will not cover research doctor or nurse, there was a list, but they were still checking). If I have to pay, there's no way I can do it, even though it seems like it would really be helpful.
Check out my site at http://susieed.tripod.com/
Thanks, Sue Edelmann
10|1|Sue, I'm so sorry to hear this......hoping you hear good news back from your insurance co.|kellysp6637|frugalk76@aol.com|18:29:48|04/20/2010|
nobody should denied treatment (of ANY kind, traditional or experimental) if that treatment could save or better the quality of their life.
Take care.
11|1|Sue, I got angry for you reading this. Your doctor makes me angry. What he did was not right and from here on out, I would have a really hard time believing what he says. I would alway be second guessing what he tells me. Can I believe him or not ?|Ranalt|ainebailey@gmail.com|18:45:40|04/20/2010|
If you are not real attached to him, "I" personally would go for a second opinion.
You know we have the great Karmamos Cancer Institute in Detroit
http://www.karmanos.org/cancer.asp?cid=18&id=101
I feel for you. This should not have happened with your Doctor. He should have been totally upfront with you.
Keeping you in my prayers.
Life is like a cup of tea,
It's all in how you make it.
Lisa
Check out my DD work:)
http://www.etsy.com/shop/LoveMankind
12|1|Is your doctor running this study?|Arizona|vbj48@cox.net|19:20:17|04/20/2010|
Or a pharmaceutical company? Is this a group study?
This is a terrible thing to have dumped in your lap. I feel so sad for you. This just doesn't seem ethical to me the way this doctor has handled this.