Run Around

forme
forme Member Posts: 1,161 Member
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hi All,
Well I talked to the lady in hematology at the center today, she basicly told me that she could not help. So, I pushed and she sent my labs reports etc. to a different lady who works for the lymphoma Drs.( I thought she had already done that) The new lady called me and left a message. She said that I need a biospy before they will see me. I had told them originaly ,thats why I was trying to see them to get a true dx. I feel like she told me to go away and sort this out by myself. My husband has put in a call to my pcp, of course it went to voice mail and have not heard from him today. More waiting. I feel so overwhelmed and underwhelmed at the same time. Very lost and a lot more fear of the unknown creeping in around me. I don't know who to turn to since I thought the cancer center was the place to go. I guess I will have to wait till tomorrow and talk to the pcp and push him. He was the one who said I needed a Pet scan. We just need some answers, and sooner would be better. I know many of you have had long periods of waiting to know where you were going. It is just so hard. I'm trying to keep the tears away. Always on the brink....

Comments

  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #2
    Hurry up and wait
    I really feel for you and I hate to say it but I told you how it would be. I have been thru it and I have raised a lot of hell.
  • forme
    forme Member Posts: 1,161 Member
    #3
    COBRA666 said:

    Hurry up and wait
    I really feel for you and I hate to say it but I told you how it would be. I have been thru it and I have raised a lot of hell.

    step one
    Well, the pcp just called. I was very surprised, thinking I would not hear till tomorrow. He said that in the am he will try to set up the pet scan asap. Now of course that could still take some time, but at least we seem to be moving. You all have been so helpful with your words of wisdom and experience. Thanks so much. Lisha
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #4
    forme said:

    step one
    Well, the pcp just called. I was very surprised, thinking I would not hear till tomorrow. He said that in the am he will try to set up the pet scan asap. Now of course that could still take some time, but at least we seem to be moving. You all have been so helpful with your words of wisdom and experience. Thanks so much. Lisha

    Thats a start!
    Hi Lisha,
    Well...thats a start! Each step forward puts you that much closer to finding the answers you need. Made me cry hearing how the cancer center treated you. Soooo not right! Very happy though that your pcp called you back today. I'm thinking things will move a little faster once the scan gets done. In the meantime while you wait for the results we will be here when the waiting gets too much for you. Keep us posted and hang in there!!! Thinking all good thoughts for you!
    Love...Sue
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #5
    COBRA666 said:

    Hurry up and wait
    I really feel for you and I hate to say it but I told you how it would be. I have been thru it and I have raised a lot of hell.

    What day is your scan?
    Hi John...
    What day this week do you go for your scan? You are my "go to guy" for whats possibly in store for me.... so be sure to share everything you find out. My hubby even asked how you were doing today. He just sits and smiles when I talk about you, Vinny, and the ladies in the group. He see's the peace I've found through all of you and appreciates the great support. Hope you don't have to wait too long for the scan results...UGH!
    Sue
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #6
    allmost60 said:

    What day is your scan?
    Hi John...
    What day this week do you go for your scan? You are my "go to guy" for whats possibly in store for me.... so be sure to share everything you find out. My hubby even asked how you were doing today. He just sits and smiles when I talk about you, Vinny, and the ladies in the group. He see's the peace I've found through all of you and appreciates the great support. Hope you don't have to wait too long for the scan results...UGH!
    Sue

    scan
    Sue,
    Got my scan today but won't find out anything till Thursday. It will seem like a weeks wait. I feel confident but don't want to get over confident ya know. Just been reading the posts and what some of the people are going thru right now. Hang in there it shouldn't be too much longer and you will have some news yourself. John
  • merrywinner
    merrywinner Member Posts: 626 Member
    #7
    forme said:

    step one
    Well, the pcp just called. I was very surprised, thinking I would not hear till tomorrow. He said that in the am he will try to set up the pet scan asap. Now of course that could still take some time, but at least we seem to be moving. You all have been so helpful with your words of wisdom and experience. Thanks so much. Lisha

    Good luck Lisha
    I have been reading your posts and have not responded yet because I was confused by it all and didn't know if I could add anything helpful. I think having the PET scan will be really helpful in trying to confirm a diagnosis for you, especially when they lay it over your CT scan. CT scans and PET scans are used together to form a picture. Something can show up on a CT that may or may not enhance or light up, indicating a highly suspicious area if it does enhance, but leaving a big question mark if it does not. The PET will show if this area or areas are active. My guess, and mind you it is only a guess, is that the areas on your CT did not enhance or glow and that is why they have not moved quicker. When I had a CT for a lump I found in my neck it enhanced and the game was on at warp speed! I remember having 2 CT's in one day and a biopsy within 48 hours. There may be something going on but they don't know what and a lymphoma workup is used to determine if lymphoma could be involved. As hard as it may be try to be patient and pray for the best...you still may have some some wiggle room. Best of luck and God bless. Mary
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #8
    COBRA666 said:

    scan
    Sue,
    Got my scan today but won't find out anything till Thursday. It will seem like a weeks wait. I feel confident but don't want to get over confident ya know. Just been reading the posts and what some of the people are going thru right now. Hang in there it shouldn't be too much longer and you will have some news yourself. John

    Fingers crossed!
    Hi John...
    One more day to wait won't be too bad...tomorrows Thursday! I'll be keeping all of my toes and fingers crossed for a good scan result! Be sure to share what you find out.
    Sue

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