How to receive Scan information

[Cindi]

I am just writing this to vent a bit. I wish that there was something in writing on how to receive my scan results. Right now I am waiting to hear the results of my PET/Ct fusion scan (it was done on 12/28 at 8:00 a.m.). No one is returning my calls right now. I am sure that they are busy at University of Michigan as it's the first day back after a holiday. I am planning on having my family at my home tomorrow morning and then pursuing in earnest getting the results.

My point is that today my 11 year old son came home from school with stomach pains and was very tearful. He said everything else was the problem, no mention of my scan results. Poor guy, I am sure that this is a big part of the problem. All of my other results have been received at work (during school hours) and then the boys would be picked up by Dad and get the news of recurrence or biopsy results when they got home.

This time I am keeping them home from school until we get the results. It wears on them too.

My Onc appt. is set for this Thursday, but I want to know the results beforehand. It is a 90 minute drive home from Ann Arbor and if the results are not good, that is a tough drive for anyone. Two days to let the news (whatever it is) sink in, is a better idea for me.

Thanks for letting me vent. It's so sad that this stinking disease affects not only me, but all of those whom I love. But, no matter what my results are, I will continue to fight to get to NED!!!!!!!!!!!!!!!!!!!!!! As so many of you continue to show me through your postings.

Thanks,
Cindi.

[Lisa]

Cindi,

Be persistent! Scans are read immediately, so doctors can get the results at least by the next day. Keep calling. Call the onc, call radiation. Be a pest!

I don't understand about keeping the kids home to find out the results. Personally, I believe that even if you have to fake it, let them know you're optimistic and that the results will be great! O.K., you may have to rEALLY fake it, but our imaginations are always worse than reality. Kids' especially.

Through reading? Go call again! Good luck.

Love and light,

Lisa

[AlaskaAngel]

Waiting

I've worked in various departments and dealt with the sequence in terms of how reports are dealt with, both as a worker and as a patient.

I truly sympathize. You made a very good point in regard to the distance you will be driving after getting the news.

If the system is working, those who have either test results that indicate a serious problem or who have test results that continue to be puzzling should be notified before those who do not. But if you happen to be among those who do not, you may end up waiting longer than those who do. And unfortunately you don't have any way of knowing whether you need to push the system or not.

I personally suffered because my surgeon forgot to get back to me at all, and then made the problem worse by leaving town for several weeks. Then we she did get back to town and FINALLY returned my call, she claimed "we" had decided not to biopsy.... I was stunned and very, very confused by it all. My cancer grew while I tried to figure out what the problem with her was. I also ran into problems getting the report from the medical records department as they insisted I had to go there in person and then when I did, they didn't have the right form for me to fill out, and then after filling out the right form, they would not provide the report while I was there, but instead had to mail it to me at their convenience, and then when they did, they sent the wrong report. My cancer grew all through that time, to a much larger size.

Considering the holiday, I think what you are doing is good, but when that time is up, be persistent.

A.A.

[Celina]

Cindi, get those results..you don't need to suffer with the "what if? symdrome" and nor does your family. Stay positive, especially with your son. I believe that children DO need to be sheltered from some of the hard facts. He needs to see your hope and optimisim.
Your fighting spirit will surely see you to a recovery. Please let us know.

[Lolly]

Cindi, I just wanted to say I hope you're able to find out the results before the drive there, it's terrible having to wait. Good luck.

Love, Lolly

[*_Cindi_*]

My PET/CT fusion scan is clear! I should clarify a bit further though.....since my recurrence was a local one last May, the PET/CT picked up a small area of concern ( rpt said, either fatty tissue or persistent tumor ) seen in same area as my local recurrence.

My Onc wants to look at the scans herself (had only seen report of the PET) and then make a decision. The Radiologist suggested a 4 week waiting period and then re-scan. So, this is a kind of gray area right now (I will see Onc this Thursday), but I am VERY thankful that everything else is clear (lungs, liver, other lymphs, etc..). Thank you all for your thoughts on my "waiting for results" email. It is so very frustrating sometimes. I started placing calls at 8:30 a.m. and finally after 3 more phone calls I placed, my Physician's assistant called me back. It must have been VERY busy there, it took me 4 hours to get the results! If there is another scan in my future, I WILL discuss how I receive the results, thoroughly with my Doctor. This was crazy!

After receiving my results I trooped my 11 year old over to the Pediatrician. His acid reflux is causing us more problems. Ped thinks it could be a bacterial infection of the stomach acids, so we have some antibiotics now to add to his Prevacid. He stayed home from school today as he was feeling so poorly. A bit perkier now, but I don't think the anxiety of my test results had that much to do with his being sick. He was certainly happy that my results were good, but still stayed on the couch feeling "yucky" (to quote him). LOL.

I agree that children DO need to be sheltered from the hard facts, all of my sons are. But, they sense things around the house and since I have young children, they are here at home with me and hear things. I gave them all a choice about hearing the results. 2 stayed home and one went to school. He called twice during the morning from school to hear the results. They are so brave and I am very proud of them. I do NOT give the HARD facts about my disease. They are just kids and I want them to live as "normal" a live as possible. As we always say...."We are just a family whose Mom happens to have Breast cancer". Otherwise, we're no different than anyone else. I am VERY HOPEful that I will beat this disease and so will many, many others!!!! There are so many new treatments coming into play....we will continue to see many advances. And thank the Lord for Herceptin!

Lolly, Lisa, Celina and AlaskaAngel thank YOU al for your insights and suggestions.

It IS terrible having to wait. But, if there is a next time for scan results, as I said before, I will work with the medical team to find a better way to receive those results!!!!!!!! I am VERY persisitent!! Ha!

Thanks again,

Keep up the good fight.

Cindi.

[Lisa]

CONGRATULATIONS!!!

love and light,

Lisa