Going for the 2nd opinion in a week. Do not like or trust the doctor I am stuck with here. He is not being honest. So traveling 3 hours to hopefully find out what is really happening. This is actually a 3rd opinion; I got a 2nd and made the mistake of going back to the original doctor for treatment. This is so complicated that I feel completely overwhelmed bu it all. My insurance won't cover the original 2nd opinion folks so I am stuck. The original doc promised that a mega dose of radiation would not fracture my ribs - it did anyway. This is my 5th cancer - I don't cry and do the hysterics, so he thinks I do not understand. Far from it - I am 10 steps ahead and thinking about what to do instead of crying about what I cannot change. I do not know things like my EGRF, even though I have asked. Hopefully I will now. Please pray for a safe journey and successful appointment.
Lauri-Anne
Written by
anrean
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Thank you, Peggy. I am very apprehensive about all of this. Trying to make good decisions but don't know where to turn so praying this oncologist has some answers. It is a 3 hour trip, but hopefully worth it and if I have to, I will make the trip on a regular basis - I just want answers and a direction instead of being set aside.
I don't blame you , you have been through so much. I will email you our Resource Guide for help with travel expenses/lodging, so take a look at that. I'll include some other information as well.
Everyone should welcome 2nd opinions! This is my 5th primary ca and the first time I have not been secure in getting the facts and knowing what is happening.
Wow. I feel blessed to have an oncologist who is open and honest with me and puts up with my questioning and research and attempts at non traditional treatments. I hope you find someone who treats you as a partner in this journey. Your feelings and needs are every bit as important as the medical expertise available. You deserve better.
Thank you for the support, Jean. I'm very scared to go behind his back but have to take care of me. Hopefully he does not find out until I have some better answers from the 2nd opinion and can digest it all. Then I will decide what to do.
Your doctor's feelings are not relevant. Most doctors welcome a second opinion. It might verify his or her treatment plan or it might open up new avenues. No one can know everything. Many doctors consult with each other to make sure they have covered all the bases. It's your health and wellness at stake here. Go for this second opinion with confidence. You can do this.
This is your body and your health. You are doing the right thing. Please go to your hospitals records department and request all records associated with this cancer. They have to give them to you. My hospital gives me the option of having it on paper or CD. The final biopsy report will tell you which mutations were tested and the outcome.
The steroids given during radiation and chemo leach calcium from the bones. Please ask for a new baseline bone density test. After treatment for 5 cancers I have to suspect you have osteoporosis and need something like Fosamax to strengthen your bones. I did.
All the paperwork from both breast cancers and the lung cancer have been sent to the 2nd opinion doc by fax and I have picked up the CDs of CT scans and the PET scan to take with me because there isn't time to mail them. I was surprised at how fast the appointment was made - it took me a long time to work up the courage to call, and within a week of receiving the paperwork they called to make an appointment. It all happened within the last three weeks.
My gyn did a bone density 3 months ago and I'm on prescription vitamin A along with calcium and vitamin D. She said I am borderline on osteoporosis and would like to stop it from progressing. Makes me wonder what else the current oncologist is overlooking.
When I think about Tuesday my stomach turns. Not at all afraid of what I will hear - I already know so much and being here know so much more than I ever knew from the oncologist. Wish I could know that the oncologist here won't blow me off as he has been doing. Take that back - I am slightly afraid of what I'll hear because I know so very little now.
Grateful to be part of this group - the support and learning have been incredible!
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