My cancer update

[KS Toronado]

Hello friends, a fair number of you have asked in my posts how I was doing, sorry I never responded
but I had no good news to report and I still don't.

Bottom line my local medical complex/hospital is killing me is how I feel. I went to "HM" January 2nd
with a small lump below and behind my right ear, within 10 days we knew it was cancerous and to this
day I have received no chemo or radiation treatment from them. It was an enlarged nymph node and is
is growing around the jugular vein. Everything with HM is scheduled 2 weeks away, test for ABC 2 weeks
away, appointment with doctor to talk about ABC test results 2 weeks away.etc, etc

So HM declares "we have no surgeon willing to do your surgery". They set me up an appointment with
KU cancer center in Kansas City, drive 4 hours to get there just to find out again "we have no surgeon
willing to do your surgery". Wait another 2 weeks to meet my 3rd chemo doctor in 5 months at HM.
"We got you an appointment with UCH in Denver with a ENT surgeon"

Yesterday drove 5 hours to UCH in Denver, the surgeon has preformed the type of surgery I need
several times successfully but mine is the worst he's ever seen. If he did surgery today because it's
grown so large I'd lose most of the right side of my neck and some of my face. Plus it's starting to
grow into my vocal cords and if it has, they'll remove them also and leave me with a hole in my lower
neck to breath. If I had found this surgeon in January I'd be in great shape today.

So the UCH Doctor's game plan is send me back to HM and have them start me on some
autoimmune therapy to see if we can reduce the size of this tumor to where he feels comfortable
doing surgery, I'd sure hate to lose my vocal cords or to breath through a hole.

Called HM first thing this morning an informed them what Denver wants done right away, 2 new tests
and autoimmune therapy started. Last time I called HM cancer center they took 2 days to call me back,
if I don't hear back from them today I'll be sitting in their office when they open at 8:00.

I really do appreciate everyone's well wishes.

[StarryNite]

1. I am so very sorry.

Our healthcare in this country is an abomination. And it's only going to get worse. Sending you healing vibes.

[hamsterjill]

21. +1000

And I echo the healing vibes to the OP.

[LetMyPeopleVote]

2. I am so sorry

I hope that you are able to get the medical care that you need

[Lulu KC]

3. Oh, man

There's so much I could say, I could do a good rant, but will just say I hope they call you back today and I'm glad you found the UCH doctor.

Please keep us posted.

[William769]

4. My prayers & wished are with you.

I hope they are able to do the surgery & God speed on the recovery.

[mucholderthandirt]

5. I am so sorry. This should not have happened to you. Peace and strength to you and yours.

[Passages]

6. All best wishes and that hope turns into a solution for your health.

[mobeau69]

7. Sending all my good vibes to you, KS.

Peace be with you in your struggle.

[Celerity]

8. Gutted to hear this m8, all my wishes that you quickly find a way to unlock the process & get on the road to recovery.

[Canada Kid]

9. Feel for you! Good luck!

This is a prime reason, much like a thousand other prime reasons...that Donald Trump can go fuck himself with all the cuts to medical care throughout the US. Sure would be nice for him to end up in a bad situation with no qualified medical services available to assist him.

[NNadir]

10. I am very sorry. It does seem that KU offers Car T cell therapy for lymphoma.

If you google University of Kansas cancer lymphoma you will be directed to the page.

If they can shrink the tumor, surgery may be possible.

Last week my wife and I watched the Ken Burns documentary Emperor of All Maladies. You may wish to procure it. It's a little "sciency" but informative. It's based on a book with the same title.

I, like everyone here wish you all the best.

[blogslug]

11. Sending out good vibes for you.

[TexLaProgressive]

12. I'm sad to hear of your lack of quality care.

My own story is different because my urologist referred me to a very competent surgeon urologist in Houston. The 3 doctors oncologist and urologists were in constant contact with one another.

You fell through the cracks with a dysfunctional team. Whoever referred you to the 1st surgeon should have consulted with them sharing all the results of your condition.

You have my prayers and what support I can offer.

[mercuryblues]

57. They have access through "MyChart"

If they don't use MyChart the Dr's office should have called to have KS sign a release before the appt for records. There was dysfunction from everyone involved in the scheduling and treatment.

One thing Drs and even insurance companies do not take into consideration is some patients are single and trying to navigate the system on their own is impossible. The billing alone is an astronomical task

[pandr32]

13. Scary stuff. You need sme love.

[Lifeafter70]

14. Sending healing vibes

Experiencing the same with my son's doctors.
Hoping your therapy shinks the tumor.

[1WorldHope]

15. Sweet jesus. That is awful.

I hope the immune therapy helps. I hope they get it started with out messing around. I'm sending you white light love. 🤍

[nuxvomica]

16. I'm hoping they can reduce the tumor for you

So you can have a more-or-less routine surgery. I'll be thinking of ya.

[Bev54]

17. Wishing only the best for you. So sorry to hear

You are going through this, heartbreaking.

[malaise]

18. Hope it works out

[brer cat]

19. I am so very sorry, KS. I wish I could do something for you,

but I am limited to sending good vibes for strength and prayers for a positive solution. And hugs...

[LoisB]

20. I am so sorry. I do hope it can be shrunken so the surgery can be done. Don't lose hope.

Strength for your journey.

[question everything]

22. What horror. Hoping for the best.

[LiberalLoner]

23. I am so very sorry. 🙏🙏🙏

[AltairIV]

24. So sorry you are dealing with this.

What a travesty. Hoping things take a turn for the better for you. Sending good thoughts.

[Doodley]

25. I pray the autoimmune therapy works. Your post brought tears to my eyes. I am so sorry you are going through this.

[NJCher]

26. you should never have had to go through all that

what the hell is wrong with these people?

If I dwell on this much longer I'm going to punch a hole in a wall somewhere.

[BumRushDaShow]

27. (((HUGS)))

Hoping hoping hoping the treatment works so you can move on to the next steps. What a PITA to have to go through all that but that is what our health system has devolved into.

[multigraincracker]

29. I've fired a lot of doctors. The U of M docs are the worse.

Every time I’ve gone in I feel like just training for the new med students. Have had the best luck with DOs for some reason. They listen to me instead of blowing me off.

[redwitch]

28. I'm sorry to hear how badly you have been treated.

I pray you can shrink it and get the surgery you need.

[democratsruletheday]

30. GOOD lord that's brutal KS....

my thoughts are with you at this time. You aren't alone, my Dad is battling stage 4 prostate cancer with bravery and vim every day. I hope your prognosis improves and please keep us updated

[70sEraVet]

31. Crap, KS

Sorry to hear all of this. I truly hope this turns out well for you, in SPITE of our 'health care' system!

[Fla Dem]

32. What discouraging news, IF ONLY, your issue had been addressed in January.

Our medical systems in many ways are failing.

I hope you get the autoimmune therapy you need immediately. Do you have family and or friends close by you can lean on?
My thoughts are with you.

[Vinca]

33. OMG, what a horror story you're living. I feel so sad for you. They keep telling us we have the best

healthcare in the world, but here you obviously need it and it's nowhere to be found. Keep us updated.

[Tommy Carcetti]

34. Prayers and well-wishes.

[flashman13]

35. A note to everyone. I recently fought the cancer battle. I won because we caught it early.

If you don't think you are getting care quickly enough, get another doctor ASAP!

Best of luck KS Toronado. Stay positive.

[MIButterfly]

36. I am so sorry you are going through this.

What a horrible (and unnecessary) ordeal. My heart breaks for you. I hope you get the treatment you need and will be on the way to better health soon.

I will keep a good thought for you.
Love,
MIButterfly

[FrankTC]

37. Cancer Is Truly Awful, But Just As Bad Is Being Treated As Disposable

Really sorry that this has been your experience. The response you describe seems uncaring and is truly disheartening. Best wishes for improved treatment and a good outcome.

[Solly Mack]

38. ...

[ChazInAz]

39. We're in a similar situation, chiefly due to Kansas.

That's why I moved back to Tucson from Atchison. Just to see my urologist involved a drive up to St. Joseph to get my catheter changed or get an injection of something. Occasional trips down to Leavenworth or KC. And that was all for an aggressive prostate cancer, as the insurance companies ponder the case.
Hope you can find better care.

[Exp]

40. Oh man, so sorry. wtf is our medical industry doing?!?! This is insane. Delay delay delay. We're all really hoping

the surgery goes as planned.

But what a thing to go trhough. I have no idea what I would do.

[mahina]

41. Immune therapy has worked miracles in my ohana,

With one individual healthy and well and cancer free after a stage four lung cancer, diagnosis more than 10 years ago.

That path forward makes a lot of sense and I will be thinking of you with a lot of aloha and hope.

[sheshe2]

42. Sending you love and lots of hugs, KS.

[a kennedy]

43. I am soooooooooooooo sorry KS Toronado

Prayers, positive vibes, love, and we’re all pulling for you.

[mobeau69]

44. You probably know this but M.D. Anderson in Houston is one of the top cancer hospitals.

I’m sending those vibes.

Peace

[Nigrum Cattus]

45. I know what you are going thru

See if any of the hospitals/medical systems has a patient
advocate, if so, talk to them abut your situation. Malignancies
need to have good treatments to be successfully defeated.
Also, eat as healthy as possible, it will help.https://www.cancer.org/

[stillcool]

46. hugs, heart and hope

on that rough road you're on. Take good care

[Spazito]

47. .....

[JoseBalow]

48. I wish you all the best, Amigo

[BootinUp]

49. Sending healing vibes and hope.

[live love laugh]

50. I'm so sorry. The delays are impossible. I hope the treatments

will minimize your surgical procedure. Keep us posted.

[SleeplessinSoCal]

51. You deserve so much better.

I wish you well.

[SheltieLover]

52. Healing vibes on the way yo you, KS!

[littlemissmartypants]

53. So sorry, KST. ❤️💔❤️

[MLAA]

54. Holding you in my thoughts dear KS.

[Cha]

55. I'm So Sorry, KS, you have to go through

This.. you're very brave.

Best of Good Luck to You

[Diamond_Dog]

56. I'm so sorry KS Tornonado.

I will join in the healing vibe with everyone else here. Wishing you all the best.

[proud patriot]

58. (((((BIG HUG)))))

always in my thoughts love and light

[NCgayguy]

59. My heart breaks for you, truly!

Dear KS Toronado,

I hope you are not having to deal with this all alone. You need a strong advocate to help you battle this. When My Tommy was going through pancreatic cancer and even after when we were told the cancer had no markers for chemo and radiation to target and he was terminal, I stood toe to toe with every doctor. Some doctors would duck into doors or around corners in hallways when they saw me coming. I even told some they were dismissed! You need someone to advocate for you, who will also shield you from anyone causing harm. No one should go through this alone. If I lived in your town, I would advocate for you! I was always the caregiver of our family. Advocating and caring for Tommy is just an innate part of me. I truly wish you comfort and support!

May You Be Healthy, Safe and Happy AND LOVED!
Reis

[Staph]

60. Don't lose hope!

I've been through three rounds of what was initially endometrial cancer, first diagnosed in 2013. The third time, I was told that there was no more chemo or radiation treatment and that the position of the cancer made it inoperable. I would probably die on the table.

I asked for a second opinion and was told about immunotherapy. I was put on Keytruda. The tumor melted away. That been nearly six years ago.

There is hope! There are new treatments coming every year; at least there were new treatments coming until the Trump administration started pulling funding away from scientific research. Try to maintain a positive attitude.

[Mountain Mule]

61. I am so very sorry that you have had to endure all this

I can so relate. I live in a small town in rural Colorado. Almost every test and procedure means a minimum of 70 miles travel to the next town over. That's if I'm lucky. I have gotten referrals to distant specialists who have waitlists of six - even ten months. So my heart just goes out to you. May you finally get the care that you need and deserve.

[pnwmom]

62. Has anyone spoken to you about high dose radiation therapy, SBRT?

I wonder if it's an option.

[murielm99]

63. This is terrible.

Cancer sucks.

I had the same kind of runaround several years ago. Finally, someone directed me to the right cancer center. It was very close by, almost under my nose. I had an appointment in two days, and they knew me by name when I walked in the door.

Someone here suggested high dose radiation. It worked for me. I have been in remission for nearly four years. My next scan is in September, and the oncologist is suggesting that I may need yearly scans only from now on.

Don't let them do this to you. Keep looking for help. Stand up and scream.

[niyad]

64. Holding you in love and light. All possible healiing vibes sent your way.

Your DU family is here for you. Lean as hard as you need.

[highplainsdem]

65. I'm so sorry, KS Toronado. You've really been let down by HM. Thank God you have seen the

right specialist now, but they should have sent you there months ago. Praying the immune therapy works quickly and you can have that surgery soon.

[Ms. Toad]

66. Sarcoma?

(One of the few that grows that quickly - mine doubled in about a month.) If it is sarcoma, get yourself to a sarcoma center. Even cancer centers don't have the expertise to properly treat rare cancer. If not, get to a center that specializes in whatever kind of cancer it is.

And keep on them. If you don't have the energy (or medical expertise), enlist a family member or friend to help keep their nose to the grindstone. Call them daily - or more frequently. If they can't give you an answer immediately, pin them down as to time. Use your electronic medical record (MyChart or equivalent). Doctors are required by law to release records in close to real time - not two weeks after they receive the result. If they refuse, remind them about their obligations under the CARES act. Read the records and do research in PubMed so you can be an effective and assertive advocate for yourself - and can be prepared to ask questions the next time you talk to them - rather than playing catch up. If you don't feel like you can do the reading and research - enlist a friend. Push comes to shove, if they keep pushing you back, mention medical malpractice for allowing the tumor to grow so large - maybe even consult with an attorney. Bottom line - don't take no for an answer, and enlist help if you're just too overwhelmed.

If you find someone in the medical facility who is helpful - get their name and contact information and keep going back to them. Don't worry about bothering them - it's your life, not theirs, on the line.

Good luck with whatever you learn going forward.

[stollen]

67. Any way you can get to another country?

like Germany?

A friend in FL had stomach cancer. They opened him up and did nothing.

He went to Germany, Tubingen University Hospital, and they told him if they didn't operate, he would die.

They actually got him back to playing racketball.

Operations are cheaper there, too. AETNA didn't require prior approval.

[DFW]

68. This is just institutionalized cruelty. I hate that this is happening to you.

Not that such things don't happen here, too. We lost a friend to colon cancer because his doctors didn't take it seriously enough until it was too late. But that doesn't excuse it ever happening to anyone, anywhere. I hope that this all leaves you with a quality of life that you still fell is worth living. That can turn out to be a big challenge as well, and I hope you manage to overcome it along with the rest.

[EndlessWire]

69. What kind of immunotherapy?

Some of it is miraculous. Get that going asap.

I want to encourage you not to give up. Don't think about undesirable outcomes. Think only about living and a positive outlook for the things you can still do and find pleasure in doing. You are needed, you are wanted. Hold on.

[electric_blue68]

70. This is So Horrible! I Hope Somehow things will turn around for you into a Sucessful Outcome!

[xmas74]

71. Bloch Cancer Center at KU was good to me.

They were my second opinion. My first was at Sarah Cannon at Research and the oncologist completely dismissed my concerns, saying he didn't think I had cancer and that I could wait for surgery. KU was also wonderful for my cousin. It's all about the type of cancer and what stage, I guess.

Good luck. I hope your next step dramatically shrinks the tumor so it can be removed.

[canetoad]

72. Best wishes KS

Hope things improve and work out for you.

[Rhiannon12866]

73. Thanks so much for checking in, my friend. That can't have been easy, but as you can tell, your fellow DUers care

And you have given us so many feel good posts with your cartoons and humor which have been hugely appreciated. As others have said, there has to be a solution. So I'm sending you those powerful DU vibes for energy and positive thoughts. You have brought us so much, it's our turn to give it back to you now.

Rhiannon

[Goddessartist]

74. Sending you lots of

Love and healing vibes. I'm very sorry for how this has been handled. Medical malpractice.

[Clouds Passing]

75. Many many healing thoughts, prayers and energies to you KS 💚

KU saved my life. I’m hoping the same for you.

[Marthe48]

76. I'm sorry that the drs let you down

It sounds like the dr. in Denver has a plan to help you.
You've fought on your own, with unreasonable barriers set between you and treatment. Maybe the help offered now will help you regain your health. Finally having someone in your corner might boost your strength.
Hang in there.

[et tu]

77. big warm hugs

it's hard but try to stay positive
du family is in your corner!

[Trueblue Texan]

78. Peace and healing to you, friend...

If you can’t get anything done, maybe you can find a place within to rest your mind. Best to you.

[DownriverDem]

79. So sorry

I hope you get the care you need. My advice to others who want to move somewhere for the view and lack of people living around them, please consider medical care too.