Lung Cancer Support
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2nd Opinion Results

Went for the 2nd opinion and the doctor was very, very nice. Unfortunately she could not open the CDs, so we are not done. She is going to follow up and have her IT department open them (if they can); said that had never happened to her before. She did say that she never would have used a mega dose of radiation in my case because both breasts were heavily radiated and that is why my ribs fractured. I go back to the current oncologist 12/21 and she wants to wait and compare those results with what she already has. She is also interested in how much damage the rads has caused to my lungs and heart. We do not know anything about the status of the tumors such as EGFR because that was not included in the reports.

The trip took the starch out of me - slept for almost 2 solid days, I have to review notes to know more and will update you after reading them.

As always, it is good to take someone with you! Diane took notes and did the driving - I now know that it is not a trip I can take alone without spending the night in a hotel, which is good to know.

Oh, and she was concerned that even with oxygen my O2 level was so low (91)

Now know I did the right thing!

Thank you for all your support!!

Lauri-Anne

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Lauri-Anne, she sounds very professional and well informed, thank goodness. So glad you followed your instincts. Now you can find out what is going on, hear your options and make a plan. I am so glad you will be able to trust your doctor, but keep on trusting YOU too:)

Frustrating about those CDs!!

Thank you for keeping us posted, so glad you are back home and can rest.

Hugs.

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Dedr Peggy,

Thank you for yours= support - it means the world to me! Will keep you updated as things move forward <4

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Thank you for sharing. Will be waiting to hear.

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So glad you went through with the appt in spite of your apprehension. It sounds as though you found a good one. So frustrating to not be able to open the cds. This doctor could not see the full picture during the visit, but it sounds as though she is going to follow through. I look forward to hearing what recommendations she has. You definitely did the right thing.

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Jean, that you for your support and encouragement! Don't know that I would have gone through with it without the support here. I have learned so very much through this message board!

It does sound like she will follow through, and finally get the answers! The paper reports were very vague. At least she is willing to call - the trip was much more difficult than I expected...we aren't as young as we used to be hehehe

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Keep advocating for yourself. You deserve the best care available and to know everything about your case. No. We're not as young as we used to be. I'm 76 and not sure I could have handled a 6 hour drive in one day plus the anxiety of the appt. Good that you were able to rest when you returned home.

Keep the faith and may the force be with you. Or if you prefer Star Trek, live long and prosper.

Jean

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My, how things change! When I was younger I used to go to Rochester for the weekend, get up early Monday morning and drive back to work! Now I'm 59 and think there is no way I ever did that hehehe I used to go at least twice a month as my sister and niece lived there. It is so different now!

I think this new oncologist is going to get the answers and hopefully point me in the right direction for care. If it means having to make the trip, then I will do it and spend the night. So far, she is willing to call so that I don't have to make the trip just to get the answers - It was very disappointing that she could not open the CDs, especially the PET scan, and I am grateful that she is willing to chase it down! Finally there is a calmness about all of this! I will be able to make intelligent, well-informed decisions, and that is a great comfort! Knowing that she would not have done the mega dose of radiation confirms my instincts that it shouldn't have been done, or at least the possible outcomes (fractured ribs, damage to lungs and heart) should have been explained.

I know some of this is my fault because I don't present as the usual patient - I don't cry and do the hysterics; tell me I have cancer and I'm 10 steps ahead thinking about getting rid of it, not dwelling on the fear and woe is me.

Thank you for your friendship on this board - it means so much that we share!

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We have to stick together. This is a long and bumpy journey with many ups and downs. We all need support at one time or another. Hoping that you will soon have a good treatment plan.

Jean

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Very proud of you. Keep being your advocate. She sounds like a good doctor.

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Dear Marymac,

Thank you for your support! I am grateful that she is going to call instead of having me return for another appointment. We all need to advocate for ourselves - I have learned so much by being on this message board! When I first got on the board I had no idea how different chemo is for breast cancer v lung cancer; it is a comfort to know that it is not nearly as bad, and I really wonder why the current oncologist did not explain the differences. There is so much to learn that it gets overwhelming but I'm doing the best I can!

Take care of you on this long journey~

Lauri-Anne

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How frustrating for you! It sounds as though going for that second opinion put your mind at ease about some of those things. I look forward to an update when you have new info.

Sorry that she confirmed your fears about the ribs breaking. Will you be taking something to strengthen your bones?

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Dear Denzie,

The current oncologist did not even think to check my bone density! It was my gyn who did, and she put me on Vitamin A along with the calcium and Vitamin D. I am now borderline between osteopenia and osteoporosis. Not a good place to be. Right now I am in a hold pattern until the 2nd opinion doc gets the information she wants and then calls me. Grateful she is willing to do as much as possible over the phone so that I do not have to make the trip again!

Thank you for your wonderful insights and support! You truly are a blessing to everyone on this board!!

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It’s an honor to be able to help others new to the process.

When steroids pushed my osteopenia over to osteoporosis my dr put me on alendrondate (Fosamax). My density score improved quite a bit and somehow that class of drugs reduces risks for reoccurrence. I’ll try to find the citation.

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You are doing an excellent service for all of us!

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Amen to that!

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