Have PET results tomorrow - Please prayers

[karen335]

Hi All,

I would like to ask for your prayers. I had a PET scan on 11-22 and finally get the results tomorrow. It has always been said no news is good news. I really appreciate all of you and pray for all of us. This forum has been my support since in my town we don't have a cancer support group. Without all of you and my family, I don't know how I would have gotten through this with a positive attitude. We are "Survivors".

I just want to say thank you and God Bless.

Wishing all a Merry Christmas and Happy New Year.

Karen

[Ry]

Hey Karen, wishing you excellent PET scan results, from one chat room b to another (sorry private joke between me and Karen, well and okdebi and Snowflake and david a and oh never mind...). Just stay well we need ya in the group.

[Debi]

Karen,

I am so glad that Friday is finally almost here and you will get your results!!! Please post them as soon as you can!! Wishing you good results......

And by the way, do you have any idea who this Ry person is??

[David A]

Hi Karen, wishing you the very best results on your pet scan.

David

[Connie B]

Dear Karen,

Sending positive thoughts your way for a clean and clear PET scan.

Good Bless and Here's to Good News!!! Clink!! Happy Holidays!!!

[norme]

Karen,

am positive you will look great on your Pet photo. Hey, why did it take so long to get the results. They should be ready within a day or two?

[dadstimeon]

Hi Karen,

Praying for you. Peace, take care and God Bless.

Rich

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[Carleen]

Hi Karen,

I am wishing and praying hard for you!!!

I am holding onto hope and faith that these scans will come out well. In fact, your request will be my special project for today; when I have any down time, I will say a special prayer for you today.

Carleen

[Hebbie]

Thinking of you today and wishing you clean and clear PET Scan results!

[MO_Sugar]

You have my prayers added to those above.

God Bless,

MO

[bobmc]

Hey Karen;

Be saying a prayer for ya, but know all will be well, be watching for your post in the good news forum.

God bless and will talk in chat;

PS - think that Ry person is a frenchee from Michigan, got to be careful

cause she's got everybodies number!!

be well

Bobmc- NSCLC- stageIIB- left pneumonectomy- 5/2/01

" absolutely insist on enjoying life today!"

[karen335]

Thanks all for your prayers.

Sorry I didn't post right away. Hubby had to dirve to Yuma, AZ so I tagged along for the ride.

Well went to see onc yesterday and now I'm really confused. I had a PET in June and now this one. In Oct I had another broncoscopy and Pulmonary doctor said he couldn't find the tumor and Biopy came back negative. At yesterdays's visit at the onc's she said according to the PET, the scan was the same as it was back in June. Said tumor still same size and still activity in right lung. Good news is it still is only in the lung. Now I had pneumonia in Sept and we all know how long it takes for that to clear up. My husband asked onc, if there was still infection in lung would that show up and could it possibly be mistaken for tumor. She said yes. I asked her how bronc test could come back negative and PET per her is positive. Her comment was I don't know. She does want me to have a CT scan and also do blood work. I don't have another appointment until the end of January. This doctor is NOT a lung specialist, her specialty is breast cancer. I am thinking I need to find a lung specialist. I am leaning towards Hoag Hospital in Newport Beach CA or Cedars Sianai Hospital in Los Angeles. Has anyone experinced it where your doc doesn't have any answers. She also told us we need to change our insurance from and HMO and go to either a PPO or EPO. The reason for this is due to what is being ok'd by the med group. She also said they are wanting to bring in another Oncology Group which is larger than her group. It sounds like she and her partner are having some problems. I'm not sure. Like I said I am really confused. This doctor is warm and compassionate, but I need her to be knowledgable and be on top of things...

So this is how it went at the onc's. More time spent talking about insurance that on results.

Thanks all

God Bless

Karen

[kimblanchard]

From the initial diagnosis by a Pulmonologist in 1999, to today...we've kept a Pulmonologist as an ESSENTIAL partner on our team.

They have done ALL the post-treatment monitoring and related referrals, labs, etc., any one could ever hope for, plus have helped tremendously with the ongoing adjustments to life with diminished respiratory ability.

It was also the Pulmonologist that provided the linkages with Pulmonary Rehabilitation (6-8 weeks of intervention that greatly improves quality-of-life) and community Lung Cancer Support groups (for either the diagnosed or their caretakers).

Cannot see how any one with LC could make it adequately without a Pulmonologist, or why...because we honestly cannot say we could've made it this far without ours.

Highly recommended!!

[kimblanchard]

Hey, why did it take so long to get the results.

They should be ready within a day or two?

THREE WEEKS after the Scan until you know the results??

In addition to being totally UNACCEPTABLE, that may be a world record!

[Ry]

I think your instincts to switch doctors are good. Regarding the insurance issue, be very careful. We had a PPO and had some major out of pocket expenses with it, just switched back to an HMO. Depending on the company and your State, there's also the pre-existing condition to consider.

Regarding your results, it sounds like at least things have reminded the same and not gotten any worse.

Start getting another doctor lined up.

Take care

[bobmc]

Hi Karen;

Thanks for posting, was getting a bit worried, when I did'nt see anything on Fri. ;

I'm real glad that there is no change to your condition but have to agree with Ry, think it's time for a new doc. No way you should have to wait that long for results and you deserve better answer's than change your insurance co. I think a lung dr. would be good, I have one but really rely on my oncologist. He is really thorough. Ya know, I just finished my tests on Fri. We did a bone scan ( last wk. ), CT scans of the head, chest and abdomen, X- rays and the bloodwork. It's once every 6 months now but during the first year it was every 3 to 4 months. I also called my insurance co. right from the start and let them know what I was going through and discussed coverage issue's.

Good luck to ya, will see ya on chat!

God bless and you'll be in my prayers

Bobmc- NSCLC- stageIIB- left pneumonectomy- 5/2/01

" absolutely insist on enjoying lifet today!"

[Debi]

Karen,

Glad you posted...was worried about you!

I second all the advice above that you need to get a second opinion. My Pulmonary Specialist was probably the most instrumental person on my "team" before my surgery. He pretty much was the one who made the decisions.

As far as something showing on the PET and not during the bronchoscopy.. I'm not sure where the area is in your lung but my specialist had told me that a bronchoscopy would not help me since my nodule was in an area where it would not reach. Of course that was the 2nd Pulmonary Specialist, the first was more than willing to do it even though his hands shook like Katherine Hepburns!! I think sometimes the procedure is a way that they can make a quick buck. But then again, I don't trust doctors for the most part!

Anyway, my 2 cents is to gather up your PET scans and other results and find a totally new doctor, a Pulmonary Specialist..you need to see someone experienced in what is going on in your lungs. It's only a second opinion but it will put your mind at ease!

[David A]

Hi Karen, Just to echo Debi also my pulmonary doc has been very instrumental in orchestrating my care since they 1st found my cancer in 3/02. I'm very fortunate to have found such a caring, educated, down to earth and "normal" doctor wish everyone could see him. He is the doctor who pushed and shoved my thoracic surgeon to finally put a stent in my right airway, and from what I understand they had some pretty heated dialogues about it(my wife works with them).

KNow that youy are in my prayers and thoughts and I hope to see you in chat tuesday, hope we aren't scaring you off, as it isn't all serious business, I need the laugh sometimes.

Your friend David

[Tiny]

Karen

I'd get on the second and third opinions right away. I think your idea to tie up with a lung specialist is right on the money!!!!! I plan to do that ASAP at the first indication of recurrence.

I guess everyone's team is different. The pulmonologist on my team wasn't worth a keen f@^t in a high wind, as my mother would say, and was the principle reason why it was 2 months from diagnosis to surgery (missed appointments because of "emergencies", double-booking me, completely losing an appointment, not having his hospital notes to refer to on my first appt., not having the requested scans available to reference during my appointments ... I had to go get them myself from the hospital and cart them over to his office...shunting me off to his P.A., not believing I could possibly have LC because I am a lifelong non-smoker and was way above average on the PFT and therefore dawdling about with arranging more scans, etc...even though he was the one who waltzed into my hospital room and said, "I understand you have lung cancer" to me right out of the blue when no one else had told me yet and I had never seen the man before in my life). I'm sure you get the picture!

The wonderful person in my life who is compassionate, understanding, and right on top of ALL my health concerns and who orders all my scans and follow-ups is my oncologist. I haven't seen the pulmonologist since surgery. Should I need to, I plan to go to the BIG CITY.

Hoping you get some better care REALLY FAST and really look into the insurance thing before making any changes.

Thinking of you.