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

And I echo the healing vibes to the OP.

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

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.

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

Peace be with you in your struggle.

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.

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.

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.

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

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

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

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

You are going through this, heartbreaking.

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

Strength for your journey.

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

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.

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.

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.

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

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

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

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.

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

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

Best of luck KS Toronado. Stay positive.

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

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.

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.

the surgery goes as planned.

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

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.

I’m sending those vibes.

Peace

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/

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

will minimize your surgical procedure. Keep us posted.

I wish you well.

This.. you're very brave.

Best of Good Luck to You

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

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

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.

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.

I wonder if it's an option.

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.

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

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.

(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.

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.

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.

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.

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.

Hope things improve and work out for you.

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

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

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

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.

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

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

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.

Thank you for writing this and giving us this insight during your darkest time.

Will be thinking about you and sending positive energy for a good outcome.

I had radiation (proton beam) treatment at KU in 2022. My wife had surgery for pancreatic cancer at CU in 2020. Both went well.

Good places both. There is hope.

Advice: Look online or in books for info about anti cancer foods. (Some foods actually feed cancer.) Diet advice from the medical community is usually poor.

Try to maintain the most positive attitude you can, even including a sense of humor.

I can't do much, but I can drive around if you need anything. I'll PM my contact info.