My trip to the ER

MsGebby said:

I called SLoan Kettering
Finally! I'm too scared NOT TO. After telling my story, the nurse I spoke with said a biopsy is truly needed. I couldn't believe that someone finally agreed with me. I got ALL my reports and doc notes to send to MSK. Well, I was surprised to read in almost every doc note that I was offered VATS and that I declined each time. I'm like, WHATTTTT???!! The first onco doc would say "we will do VATS if you want to" but then she would tell me what could happen (lung collapse and whatnot) and that it is very risky. She would also say her systemic therapy approach not change if it is mets. Her belief was that it would be breast cancer which is highly ER/PR+ and that would be all I need. Well, here it 3 months into taking Arimidex and the nodules keep growing and multiplying. My heart tells me it is NOT mets from breast cancer. 6 nodules have doubled in size and 2 more were found since the last CT scan 1 month ago. What am I to think?

Anyway, I faxed 50 pages to MSK. The gentleman I spoke with there (thoracic surgery department) was so kind. He was doing his level best to keep me from completely falling apart. He said the reports I send him will be scrutinized by the team of doctors who will be in charge of my care. He tried to tell me that he sees this all the time and that it may not be as bad as I think. He feels that I am being proactive and that my call at this time just may bring the best possible news if it this is cancer. He feels I may be Stage 1 because it sounds like I jumped on this so fast. Now I wait for a call from this facility. If I need surgery to resection my lungs, it will be in NYC (i live in NJ). Treatment can be performed in NJ. That facility is 35 minutes away. I think I am jumping the gun talking about surgery and treatment. I honestly hope I need either.

I am such a mess right now.

I want to thank you all for holding me up. I truly feel blessed, Thank You Thank You Thank You.

Please know that once I have more information then the OLD Mary will be back. I function better when I know what I am up against. I am trying to stay positive. My faith is still very strong. It's just that I feel so little ... so weak ... so scared ... at the moment. I didn't think I would break down. I mean, I've been down this road once before. But this is looming so large, it's just unimaginable to me. Please excuse me for sounding so negative. I am not trying to go there.

I am looking forward to the nice weather that will be here for the weekend. I have plans to visit with Dad in PA for Father's Day. I just hope I don't lose it when I am there. He doesn't know and I have no plans to tell him. Not just yet ... hopefully my fears will be for naught. One can hope, right???

StaceyPMD1121 said:

Praying for You

My prayers are with you Gebby. I am glad that you got a second opinion. God will give you the strength to get through this crisis. Hold on to your faith and read the Bible to calm you. Try to do something you enjoy to take your mind off things. Come and post and vent often to keep from exploding on the wrong person.

Peace,Blessings,Love & Big Hugs,
Stacey

Faith1122 said:

prayers
prayers & hugs to you.

MsGebby said:

I called SLoan Kettering
Finally! I'm too scared NOT TO. After telling my story, the nurse I spoke with said a biopsy is truly needed. I couldn't believe that someone finally agreed with me. I got ALL my reports and doc notes to send to MSK. Well, I was surprised to read in almost every doc note that I was offered VATS and that I declined each time. I'm like, WHATTTTT???!! The first onco doc would say "we will do VATS if you want to" but then she would tell me what could happen (lung collapse and whatnot) and that it is very risky. She would also say her systemic therapy approach not change if it is mets. Her belief was that it would be breast cancer which is highly ER/PR+ and that would be all I need. Well, here it 3 months into taking Arimidex and the nodules keep growing and multiplying. My heart tells me it is NOT mets from breast cancer. 6 nodules have doubled in size and 2 more were found since the last CT scan 1 month ago. What am I to think?

Anyway, I faxed 50 pages to MSK. The gentleman I spoke with there (thoracic surgery department) was so kind. He was doing his level best to keep me from completely falling apart. He said the reports I send him will be scrutinized by the team of doctors who will be in charge of my care. He tried to tell me that he sees this all the time and that it may not be as bad as I think. He feels that I am being proactive and that my call at this time just may bring the best possible news if it this is cancer. He feels I may be Stage 1 because it sounds like I jumped on this so fast. Now I wait for a call from this facility. If I need surgery to resection my lungs, it will be in NYC (i live in NJ). Treatment can be performed in NJ. That facility is 35 minutes away. I think I am jumping the gun talking about surgery and treatment. I honestly hope I need either.

I am such a mess right now.

I want to thank you all for holding me up. I truly feel blessed, Thank You Thank You Thank You.

Please know that once I have more information then the OLD Mary will be back. I function better when I know what I am up against. I am trying to stay positive. My faith is still very strong. It's just that I feel so little ... so weak ... so scared ... at the moment. I didn't think I would break down. I mean, I've been down this road once before. But this is looming so large, it's just unimaginable to me. Please excuse me for sounding so negative. I am not trying to go there.

I am looking forward to the nice weather that will be here for the weekend. I have plans to visit with Dad in PA for Father's Day. I just hope I don't lose it when I am there. He doesn't know and I have no plans to tell him. Not just yet ... hopefully my fears will be for naught. One can hope, right???

MsGebby said:

ASloan Kettering rep called
ASloan Kettering rep called yesterday and said I did need to be seen. ~protocol says 1cm is when nodules can be biopsied~
I said ~ i believe the protocol he is talking about is basically for those who are not high risk and that i believe i
Should be considered high risk because i have/had cancer~ we talked for bit and he then said he would present
My reports to the doctors. Well, the same rep (for lack of a better term) called today and said the docs want to see
see me this week. I have an appointment for Friday morning. I am finally going to get some answers. Thank You
Lord:-)


Fuel up the pink bus....I need my sisters with me.

Xoxo
Mary

Different Ballgame said:

You Are Now in Good Hands
You can't ask for better than Sloan Kettering. You are in good hands and will be taken care of quickly, giving you the peace of mind that you need. Thank goodness you acted quickly by contacting them for a second opinion.

Lots of Hugs,
Janelle

survivorbc09 said:

I am on the bus for you
I am on the bus for you too!


Hugs, Jan

SIROD said:

The Unknown Is Often Worst to Deal With Than The Reality
I am so very happy that you called.

That is why it is so important to have the notes. I have read things in notes that were never stated at the appointment. It is good to have their notes to be on the same page with the doctor. Maybe they think they told you but many times they didn't.

Mary I am hoping soon it will be all resolved. You have had a hell of a ride with this for nearly a year.

Thinking positive thoughts for you,

Doris

weazer said:

I'll be on the buss
Mary my prayers are with you dear sister, Good Possitive thoughts also!
LOTS OF HUGS KARIE