Still no answers, just more tests

[KathyC]

Had a PET scan over a wk ago but nothing remarkable; said it showed a very very mild something happening in the spine & prostate which we already knew & both biopsies were negative for those areas. Tons of lab work back but all negative. Another day of tests tomorrow; repeat of CT scans of abdomen & chest to see how much whatever this is has progressed in the last 7 wks in the pelvic lymph nodes & the lungs. Also doing some kind of scan of the thyroid. Will see the oncologist on Monday. Since the middle of July we've had $40,000 worth of labs, x-rays, MRI's, biopsies, etc & know we have a problem but no diagnosis & therefore no treatment started since you can't treat something when you don't know what it is. Anyway, we've decided to see what oncologist says on Monday & if this has really progressed further into the lymph nodes & lungs we are going to request a transfer to Mayo Clinic. DH does not want to offend the drs who have really been trying to figure this out but I don't feel we can continue with endless tests & no answers if this is continuing to spread so he has agreed with me that it might be time to move on. So thankful we have good insurance & really feel for anyone faced with a major illness & no insurance. Of the $40,000 we have only had to pay $2,000 which is still tough on the budget but could be so much worse. Will update again after Monday oncologist visit.

 

[Donna - dsw]

Kathy - you must be beside yourself!

How is hubby feeling?

Sure hope they find out something so they can take aggressive action. I agree - - Mayo here we come!

Please keep us posted and know we are thinking of you!

Take care!

 

[Hucc]

waiting and no results -- that is so hard

prayers continue

 

[Cruise cutie]

HUGE hugs from me.. time to bring in the BIG guns and gett outta town.. keep us updated.. and keep the Faith.. Prayers continue.:angel...Joanne

 

[Jill B]

.

Kathy, I am so sorry you still have no answers after all those tests. I am keeping you and hubby in my thoughts, and praying you get a diagnosis soon.

 

[BostonsJ]

Kathy I agree it is time to go to the big dogs. And I'm sure the doctors understand you need answers and they can't give them to you.

You take care. Prayers continue for you and hubby.

 

[reggae]

Kathy, I too believe you are doing the right thing by going to the Mayo Clinic. It's got to be so tough for all of you, not knowing. Prayers for all of you, to find answers soon.

 

[conniecat]

So sorry you don't have answers yet. Waiting is the hardest part. Hope you hear something soon, and it is good news. Hugs, cc

 

[mrsrocster]

I have to ditto what others have said Kathy. If you can go to the Mayo Clinic (regardless of what the O. Dr. says), I think I would ask anyway, it can't hurt. Goodness, all these tests and there isn't a definitive answer! Ugh!

You know that all of us here at @ddicts are behind you and your DH every step of the way!

These negative results are great, but not great because he's still having issues but we don't know what they are! I know I'm not telling you what you don't already know, just re-iterating the frustration!

Take care and remember, we're here for you!

Michelle

 

[Gayle V]

I think you're doing the right thing. You've been incredibly patient already, waiting for answers. It's time to look elsewhere.

Good luck.

 

[nieciez]

Yep, it's time to call in the big guns...keeping you both in my prayers.

 

[Karry]

Kathy, sorry you haven't had any answers yet. I was just thinking of you and your DH the other day. And about 2 sentences into your post, I thought: boy, maybe they should take all the test results and go to the Mayo Clinic. I think this is the BEST decision right now, and I am sure the other dr's would agree with you. Keeping you both in my prayers and please keep us updated. =hug

 

[JANPEP]

So sorry you still don't know anything, it's been a long expensive haul' I agree you should head to the Mayo.
Continued prayers & good wishes for the both of you from MN.

 

[GloBug]

One thing I learned during my pregnancy was that you have to take control of your own health care. RUN to the Mayo, and find out what the heck is going on! Prayers for hubby to be able to handle all this, and prayers for you to keep strong, you are his strength right now, and he's leaning heavily on you.

 

[JacquieP]

Prayers are still headed your way. A second opinion is definitely required, especially when there is no FIRST opinion.

 

[bostongal]

Kathy =hugs to you and your dh. Don't worry about offending the doctors by requesting to go to the Mayo for answers - they will understand and help expedite the process for you. I hope you get some answers and a treatment plan soon so that you and dh will know what you are dealing with - not knowing is the worst. I will keep you both in my prayers.

Meg