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what to say to people who are pesaamistic with your diagnosis?

cathyK's picture
cathyK
Posts: 88
Joined: Jul 2009

I have a problem, the last three people I have talked to have been pesamisitc saying, well you do have 5% chance of survival,
so "I wouldnt put money into your teeth If I were you" while talking to cancer cares ! of all people.
My GP saying I need anti depressants because I am mad about the pains I have and alergies ( I have never had before ) and cant figure out what is going on and slight hot flashes, I said oh well it is good on hot flashes, she said yes and for depression, you DO have a diagnosis of %5 so your depressed right , NO I AM NOT , If I were Id just throw myself infront of a truck, that is not ever run through my mind,
I am mad I can not figure out pains, and especially the alergies ! sounds like I have a cold sniveling and running eyes, everyone runs when i come in as they think I am contagious !
I am frustrated about the new HMO rules, I am frustrated that I have to wait now to see if the chemo worked.
thank God the only one that is not saying that is Dr Liu, she said yes there is a bad diagnosis but we are going to be positive and do all we can to give you a LONG life, I am only going to see her once every 3 months unless there is recurrance, and then I if I have to get chemo I will not be able to get it at U of M as my medicade hmo will not allow it. so I am finding all these extra problems coming up with this dang hmo, like giving me a driver who had a very full ash tray in the front seat by me, was feeling very ill when I got in his car, asked him to move it away from me , as I had asked them prior to not have a driver that smoked, well that fell on deaf ears, he was not happy about having to stop and move the ash tray . new hmo says it is a crap shoot I will get who ever driver , I have NO choice in the matter, more headaches.
sorry for ranting.
ao any suggestions other than telling my doc over and over I am not depressed
and hanging up on the cancer cares person.

cathy K

culka's picture
culka
Posts: 158
Joined: Oct 2009

Cathy, when I was waiting for my pathology report, I finally googled all 3 cancers what they said that I have. one was UPSC and very first paper got conclusion: no matter what stage, overall survival rate is 20%. My respond was hmm, lot of competition and because I was in that piss off moode I said to myself you can do it girl.
Think about yourself that you are one of these 5% lucky one. Actually it is not luck, but lots of hard work. You really have to change everything in your life.
Good luck
Jana

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Is it Dr. Liu who says you are depressed? In any case, you have every right to be depressed or not be depressed. These are YOUR feelings and no one - NO ONE - has the right to tell you what YOU are feeling - PERIOD!!!! I am a psychotherapist, a licensed clinical social worker. I don't have all the answers, but I do know a few things. And I am a sister patient along with you.

So heck with these people who are trying to tell you how to feel. Many people, I personally know some, have beaten the odds. My brother-in-law was given 3 months to live nearly 16 year ago. He has since run the Marine Corps marathon - without a stomach to boot!!! He has a great quality of life and had 5 grandchildren since he was diagnosed with terminal stomach cancer. We don't have to give up.

I say, hang with the optimists, not the pessimists. We can enjoy life - even with a diagnosis. We are not just a diagnosis. We are people who contribute to the world. We can feel joy and help spread joy. Cathy, you have a particular challenge since you are "beholding" to many bureaucracies. I know how I felt when I needed a PET scan and my insurance refused. It is a very helpless feelings. But don't give up the fight, friend. Keep advocating for yourself, like you have. Look what you have now - one of the best cancer docs!!!

I wish you peace and joy, Love, Mary Ann

cathyK's picture
cathyK
Posts: 88
Joined: Jul 2009

dr Liu is the one that I had a GREAT time with with her 3 students listening in on the conversation intently, she was extremly positive!!! my g p is the one that said I was depressed.
yea the hmo is horrible at best, the only thing I have seen good with it is I dont have to pay the $1 to $3 for meds. price now is 0
other than that nothing is going well with them , 400 min on phone with them so far since nov 1 ! yes I counted the min off my phone bill!
cant wait for the ct ! want a pet scan too and the second doc (the one day doc to get chemo away from first doc) said he orders pet/ct scan and they have a machine that does both at once at his hosptial but dr Liu says if they see something in the ct they will do a pet scan, the wait is the worst, I feel fine other than abdomine pain when I touch or lean against something or wear pants (my size!) I have had pants and undies 3 sizes big since operation! getting tired of that
I get upset and a couple people relate that to depression and angziety (sp) cant spell sorry,
I am mad and it comes out as that not depression, soooooo
thanks for the notes, and I am pressing on.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I can relate to the problems with insurance. I spent many hours on the phone trying to get the PET scan my doctor ordered. I learned a few things that might help you:

1. They have the standard protocols that they will not compromise. Go with the flow and have the tests they WILL cover first. This can be frustrating and a waste of money but they won't budge with it - I learned.
2. they have internal advocates that can help - request a CASE MANAGER. This person helped me by advocating WITHIN the system. Get to know this person and ask them how you can get what you need.
3. PERSIST. I read that after a procedure is denied, that most insurances finally give in with persistence. Follow the appeal process and keep appealing - DON'T QUIT!!!!
4. become educated. Use their system to your advantage. I researched the insurance company's own criteria for PET scans and used this in my argument for it.
5. enlist the help from your doctor. They know how to use the system and sometimes they will order the same test another way. Tell Dr. Liu of your problem and ask her help. She's probably get one of her students on this.
6. Keep good records.
7. Try to stay calm during this. They are bureaucracies and go VERY slowly. Accepting and expecting this will lower your stress and anxiety.

Yes, I finally got my PET scan. And you will get your tests too. Unfortunately, I will probably have to repeat this next time a PET is ordered.

Hang tough, Kathy. Mary Ann

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

Dear Cathy,

You have been treated pretty raunchy; and when you are down and out! I am ashamed of those professionals and think they should be reported.

I don't know what stage your UPSC is, but the percentage of people living and beating has increased dramatically with chemotherapy the last two years. Any information older than two years may not be accurate. Even if your chances were 5% you have to realize that someone made it and perhaps you can too.

I know dentists often like to just do teeth cleaning before chemo and save other work until chemo is completed. It is safer that way because of risk of infection. It doesn't sound like they explained it that way though!

We wish you the best with your chemo. the drugs are ususally Carboplatinum/taxol and it really doesn't matter where you take it as long as you are followed by an oncologist. Taxol always made me depressed but I felt better when I completed therapy.

Perhaps you need to bring a note book and write the names of the nonprofessional people and go to management with your complaints. I know that is not what you feel like doing now. Surround yourself by positive people. Avoid the toxic people (the ones who for some reason like to make your life harder during this time) remember; more women are surviving this than years before.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I agree with Diane. That link about the 10 things cancer patients should know includes being assertive and asking for what we want. I just want to make a couple of points.
1. We can and should report this type of thing to the administration and even to the state licensing board. You can find out about procedures online.
2. my hygienist told me to use the "purple" rinse during chemo because it gives extra protection to the teeth.
3. It's ironic that I had those same thoughts about investing in my own teeth recently. I forged ahead and chose to be optimist and invested in myself. It's certainly a different story when you are being "talked about" publicly by professionals as if you were non-existent. This was really uncalled for. These people need some education and at the very least, sensitivity training.

You are worth it Cathy, Thanks for sharing with us here. Mary Ann

cathyK's picture
cathyK
Posts: 88
Joined: Jul 2009

thaks songflower,
I have already gone through chemo cisplatin/taxol/ andromisin (sp) 6 treatments.
my new HMO, medicade run, has given me hell lately, since all were forced to change to medicade/HMO as of nov.1
my PCP is dragging her feet to send requests to my HMO to have Dr Liu as my specialist and now I find that this needs to be done EVERY time I go see her and EVERY time she reads any records (that would be charged).
Yes I am standing up for my self now, and writing down names . told my PCP 2 days ago that she was pushing me into going to see a general oncologist as "I dont have a uterice any more so I dont need a gyn/onc) yep she said that, the oncologist was surprised at this comment and said he sees gyn cancer 2 times a year or so, and sent me to dr Liu so now my PCP thinks she does not have to do anything,
sent her a long note stating her job and if she can not do this or does not want to do it , I can get another PCP . have had no response from her but did get a call from the oncologist she sent me to. the nurse said she is sending in a request for me to see Dr Liu end of january for 3 month check up , now to get her to do that with CT scan and other tests I am having and sending to Dr Liu,
it is confusing and very upsetting on the phone all day to every hospital I have been to to send files to Dr Liu, and deal with medicade and deal with my general doctor,
I do have advocates ! :) the general oncologist nurse and dr Liu's multiple nurses :)
holding my breath as I have first CT scan since finding out I had cancer in June.
details to come , I hope :0
cathy

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I see a team of 3 oncologists for my cancer, all very different:

When I asked my chemo oncologist yesterday what subtle symtoms I should be looking for that would warrant me immediately calling him for an appointment, he said "Call me and tell me how your turkey turns out next week. & Call me when you go someplace else fabulous like Greece and tell me all about it." He always talks as if he has cured me, and I have UPSC Stage III-c! He's the eternal optimist and I try to match his attitude as much as I can.

My radiation oncologist is more realistic. He just said "So far, so good" at my last clear CT-scan. That's as far as he goes in celebratory comments.

My gynecologic oncologist, when I pushed him, said he felt that with the aggressive surgery and adjuvant treatment that I had; and my cancer only found microscopically in 1 lymph node; he put my odds at 70% for a cure. He's the head of Women's Health at Geisinger and has decades of experience. He said the most important thing I could do to prevent recurrance is 'Be Happy'.

So let's all try and 'Be Happy' as much as we can, and defy the odds! ((((Hugs))))

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I double-posted. (sorry). So I'll 'EDIT' this and add a note about TEETH.

During my chemo I had some mouth soreness and actually had a bridge break off towards the back of my mouth. (I have 2 places on my lower jaw where I never had a permanent tooth waiting to replace the baby tooth and so kept my baby teeth in those 2 spots until I was in my 40's and it started to get loose. At that time I had 2 bridges cemented in with a fake tooth on each side to replace the baby teeth I had pulled at 42.) because I was having chemo, all the dentist could do was smooth off the area and ask to see me after treatment.

Now that treatment is over, I also wonder whether I should invest the thousands it would take to have a tooth inplant done. It's considered cosmetic and not covered by insurance, and the gap is way way back in my mouth and doesn't show. And the dentist said "at your age, your other teeth won't shift into the gap like they would if you were younger". (MY age!!?? HA!)

If I was positive I was going to live another 20/30 years, I'd have the tooth inplanted. If I was positive I would never need to be re-opened, I would have my belly scar reduced by a plastic surgeon, maybe even have a tummy tuck and my eyes lifted while I was already getting elective surgery. But I'm not sure. I wouldn't have elective surgery done now, unless I believed it was the last surgery I would ever have to have. In my heart, I don't beleive it enough to have the work done that may then get messed up again by a later surgery.

So I do know what you're saying here. Investments you may have once made in yourself,...now, maybe not.

cathyK's picture
cathyK
Posts: 88
Joined: Jul 2009

hey Linda,
well my teeth were in extreme pain, ie root canal on the tooth beside the 2 front upper teeth so taking it out was less of an option, I have a tooth taken out beside the second last molar in the lower back, the last tooth is taken out too so there stands this pathetic over filled molar and empty spot then my other teeth, have pain problems there trying to eat, but could never afford cosmetic anything , let alone even think about it!
and yes keep happy , yes when I am not on the phone to my medicade hmo or not on the phone to the general doctor begging her staff to send the correct forms, I find out today that she did not send the correct mamogram form, it is for a 6 month visit not a general 1 year visit and it is tying the hands of the hospital which could have got me in today for mamogram but the wrong script was sent to them,
more headache. but happy other wise

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