results of 3 month ct scan

sandysp
sandysp Member Posts: 868 Member
in Anal Cancer #1

Hi everyone,

I see there are quite a few new people on the board. I was stage 3b when diagnosed in 2011. I was too ill to take as much chemo as was called for and so they cut back my dose. I had a spot on my lung and have been on this board about that ad nauseum for the last year, particularly when it suddenly "waxed."

I was so sick of cancer stuff I laid low for the last three months. After my last scan, in which the thingy on my lung had waned finally instead of its waxing spell, I really expected the same progress. I have been feeling nothing less than terrific most days. I even went back to work in real estate sales by popular request of a few of old clients who needed me, which felt good too. I have been getting IgG infusions monthly and this has been a bit of a headache with the insurance companies, etc and so pretty much I have focused on that as being the health drama du jour.

But unfortunately, when I had my scan on Wednesday, it needed to continue waning for my doctor to feel good and put me on a six month scan call back but instead it "stayed the same". He said "I should have ordered the scan with contrast."

This is what the scan said about the lungs:

  Infrahilar masslike opacity 
inseparable from the adjacent inferior right pulmonary vein and impossible 
to accurately measure, roughly 2.8 x 1.7 cm again noted, most recently 2.5 
x 1.7 cm, 3.0 x 2.1 cm on the study previous to that. Comparison is 
limited by lack of intravenous contrast on the current exam. Scarring or 
atelectasis adjacent to the lesion again noted. Punctate subtle ground 
glass focus in the posterior left apex is unchanged. No new suspicious 
lesions have developed.

I am naturally happy to hear no new lesions have developed but my doctor said he is not 100% sure this isn't cancer and that, even though I knew would be the truth if this thing didn't go away, I didn't want to hear. 

He said I need to come back for another scan in 3 months. That will put me in July when the scan was taken last year when it was at it's largest point historically. We have been watching it mostly grow since 2011 when a spot showed up on the Pet Scan.

The surgery would be difficult and I know that's why they haven't already jerked this thing out of me, but I am leaning toward thinking I need to not live like this anymore. What would you do?

I decided to put my work at the church and my sales job on hold for a few weeks, leave my husband with the house and animals and take a trip by myself from the mountains to the NC shore which I have never seen before and say hello to my siblings in SC too. I am going to travel leisurely. This will give me time to think, to listen to music on my car's sattelite music for hours upon end, to write, to meditate, to read, pray and think but mostly just accept this situation.

I also think I need to ask my doctor to schedule the scan with contrast sooner than in three months, like when I get back. Would you? I wasn't ready to hear more about it on Wednesday. I really just wanted to run and that's what I am doing. I don't think it is going to make that much difference, and I probably can't even get into see him again before three months but I am not comfortable going through this over and over like I have been doing. Nor do I relish having unnecessary surgery. I just have to be able to live with the concept of having unnecessary surgery (hopefully) or realize it could be necessary surgery (hope not).

Sorry, I am not going to spend any more time on this board tonight. But will check in later this week. I really want to put things out of my mind as much as possible. I am going back to my silly mystery book and more sleeping, hopefully.

All y'all hang in there and take care of yourselves!

Love,

Sandy

 

Comments

  • lp1964
    lp1964 Member Posts: 1,239 Member
    #2
    Hi Sandy,

    I personally would not stop until I'd find a definite answer for what that spot could be. I just could not sleep. But this is me and I don't want to push my personal approach on anyone.

    That trip sounds great. I found that I come up with the best decision on trips. Think differently when you are outside of your daily routine. Wish you the wisdom and patients to make the right decision and mainly that you have nothing to worry about.

     

    Laz

  • eihtak
    eihtak Member Posts: 1,473 Member
    #3
    Sandy....

    I am so sorry you are facing yet another challenge but your trip sounds absolutely amazing and a great way to get your thoughts together. I love to drive and listen to the radio by myself and could do it for days and be in heaven as I do my best thinking when driving! I have been to both North and South Carolina, you are going to adore it there!

    We are on a similar path as I was diagnosed 4 yrs ago with Stage 3b as well. I had been feeling wonderful and managing any lingering side effects when on my follow-up scan this past January a large mass (3.5cm) decided to show up out of no where with no warning! There was nothing noted on prior scans though as in your case. I did have surgery to remove the entire left lower lobe which contained the mass and was happy to hear that surrounding nodes were clear. The surgery, while not fun and a bit of a scare, went well and healing was much faster than I anticipated. I am currently following with chemo (not always necessary but recommended by my doc) as adjuvant to catch any rogue cells not seen. The chemo week and couple days after is rough, but I bounce back steadily until the next cycle (every 3wks) and am nearing done with the whole thing!

    I know we are all different and your situation is not mine, but in answer to your questions....yes, I would request a scan with contrast, and yes, if surgery is an option I would do it. Aside from the chemo week, I feel good. I am keeping active and would barely know I was short half a lung. I have read that in some people the remaining lobe is able to increase in size by 35% in order to make up for the part removed. I am not yet 100% healed but will get there soon.

    Do enjoy your leisure time away it sounds very healing. Your faith will lead you in the right direction so don't make it more difficult than it needs to be. I will keep you in my thoughts and prayers for peace and health along the way.

    katheryn

  • pializ
    pializ Member Posts: 508 Member
    #4
    eihtak said:

    Sandy....

    I am so sorry you are facing yet another challenge but your trip sounds absolutely amazing and a great way to get your thoughts together. I love to drive and listen to the radio by myself and could do it for days and be in heaven as I do my best thinking when driving! I have been to both North and South Carolina, you are going to adore it there!

    We are on a similar path as I was diagnosed 4 yrs ago with Stage 3b as well. I had been feeling wonderful and managing any lingering side effects when on my follow-up scan this past January a large mass (3.5cm) decided to show up out of no where with no warning! There was nothing noted on prior scans though as in your case. I did have surgery to remove the entire left lower lobe which contained the mass and was happy to hear that surrounding nodes were clear. The surgery, while not fun and a bit of a scare, went well and healing was much faster than I anticipated. I am currently following with chemo (not always necessary but recommended by my doc) as adjuvant to catch any rogue cells not seen. The chemo week and couple days after is rough, but I bounce back steadily until the next cycle (every 3wks) and am nearing done with the whole thing!

    I know we are all different and your situation is not mine, but in answer to your questions....yes, I would request a scan with contrast, and yes, if surgery is an option I would do it. Aside from the chemo week, I feel good. I am keeping active and would barely know I was short half a lung. I have read that in some people the remaining lobe is able to increase in size by 35% in order to make up for the part removed. I am not yet 100% healed but will get there soon.

    Do enjoy your leisure time away it sounds very healing. Your faith will lead you in the right direction so don't make it more difficult than it needs to be. I will keep you in my thoughts and prayers for peace and health along the way.

    katheryn

    Sandy

    I think going for the road trip is a great idea. We went to Cornwall at the weekend, and there was a family at Land's End from Charlotte in NC. It will be good for you to catch up with your siblings.

    i think though, like Laz, that I would be needing to have a definitive diagnosis. Knowledge is power! You could then make an informed decision on which way to progress your treatment. I hope the road trip gives you what you need.

    much love

    Liz

  • mp327
    mp327 Member Posts: 4,440 Member
    #5
    Hi Sandy

    I am so, so glad to hear from you--I've thought of you so many times.  I will cut right to the chase.  If I were in your situation, I would get that CT with contrast as soon as possible and if there has been no decrease in the size of this mass, I would get scheduled for surgery.  I know surgery is nothing to look forward to, but not having this iffy situation hanging over one's head is even worse, IMO.  I would schedule that CT scan for as soon as I returned from that trip you have planned, which I think sounds wonderful BTW.  I love NC, especially the Asheville area.  That will be a great way to sort everything out.  I am a girl who loves to get in the car and just drive by myself.  I think it's a great idea.

    I can't speak from personal experience, but from other comments made, this surgery does not sound as horrible as advertised.  If it were me, I would do it.  I will keep you in my prayers and ask God to guide you in your decision-making.  I want you to be well, my friend.  Take care, drive carefully, and please let us know what you decide to do. 

    Hugs and Prayers--

    Martha

  • jcruz
    jcruz Member Posts: 379 Member
    #6
    Hi Sandy

    I hope you have a wonderful and peaceful time on your trip.

    I just want to echo what others have said.  I'd want that scan done ASAP.

    Take care

    Janet

  • TraceyUSA
    TraceyUSA Member Posts: 316
    #7
    Good to hear from you, Sandy

    Your trip sounds great!  I have often thought of going away like that by myself but have never been courageous enough to do it.

    As for setting things in motion sooner, I think your body and mind are telling you that's what needs to be done even if it's just for your own peace of mind.  I know that prior to diagnosis, I like others were told it was a hemorrhoid but deep down I knew that there was something more wrong.  I'm not saying that something is wrong, I just saying there's a reason you have these feelings and thoughts.  Listen to your inner voice.

    Best wishes for you and a safe, fun trip,

    Tracey

  • sandysp
    sandysp Member Posts: 868 Member
    #8
    TraceyUSA said:

    Good to hear from you, Sandy

    Your trip sounds great!  I have often thought of going away like that by myself but have never been courageous enough to do it.

    As for setting things in motion sooner, I think your body and mind are telling you that's what needs to be done even if it's just for your own peace of mind.  I know that prior to diagnosis, I like others were told it was a hemorrhoid but deep down I knew that there was something more wrong.  I'm not saying that something is wrong, I just saying there's a reason you have these feelings and thoughts.  Listen to your inner voice.

    Best wishes for you and a safe, fun trip,

    Tracey

    Thank you everyone

    I really appreciate your input, everyone.

    I had this great big fight where I said F-you to my husband for the first time in our 22 years because he feels exactly opposite of all of you and he went to my Oncologist with me where she reitterated the "watch and wait" scenario that is our present strategy as proposed by the Pulmonologist. On the way home he really didn't mean to upset me by saying I was reading the reports too much, should stay off this board, etc. was catastrophizing, obsessive, etc. but you can imagine how wide eyed I was and how much I waved my arms around with a high pitched shriek telling him to "back off with his judgments", etc. He sounded so "in control and rational" I thought I would just brain him. People who haven't lived in our shoes don't understand how stressful this is. But the good news is I had been on this board just before going to the doctor with him and knew I wasn't alone in my feelings of frustration with that report. You knew how you would feel and that helped me immensely to own my feelings and advocate for myself.

    The doctor did say the only way they will know for sure what it is would be to take it out and slice it up but that would take an open lung procedure which the Pulmonologist has not yet called for. She understands that I feel stressed about this every three month watching but that the 2 millimeters it "grew" is not significant. It was always close to the vein of course, but I didn't know that until this last scan which was upsetting to suddenly see.The reason it is indistinguishable from the vein and difficult to measure, (it always was) she believes is because of its "opacity". She was surprised I have not been sick, though, as was the Pulmonologist since it looks like it could be "inflammation." I haven't had an inflammation in two years this coming June that I know of nor have I been coughing. I also do not have a single symptom of Bronchiachtisis, oddly enough which was another word that was thrown around for a while. It concerned me when they asked me at the Pulmonologist's office if I was coughing up blood because that's the first time they ever asked that question that I can remember.

    In any event, she says it is the call of the Pulmonologist. I know from this board, they usually review files on Mondays, though at MSKCC as a group, and we haven't had a Monday yet since the last scan. If there is any change, I am sure I will hear something. But I asked her to ask the Pulmonologist some questions for me about my concerns about what happens if . . . ?" (This is what upset my husband so much, I think).  So I am so glad you all support me also in taking this adventure trip. My husband apologized this afternoon and I appreciate that and I apologized back. 

    For now I have done all I can do and will just work and then take off. I really look forward to getting to the Southern East Coast Shoreline. I still don't have any itinerary and plan to keep it that way and don't have a clue yet where I will wind up as a destination. Virginia Beach? Wilmington, NC? Charleston, SC? Again so grateful I feel so much better than when I found myself a patient at MSKCC four years ago May 5th.

    Thanks again for your input. I am inspired by everyone and it was so good to hear from you. I will never forget how you took the time to help me once again all of you especially you Katherine. I can't imagine the surgery or chemo is any fun at all but we do what we have to do, don't we. Thanks for your input. We really need each other. I will check back in when I return but since I am still in no man's land, I think I will continue to give the board a rest for a while longer. It overwhelms me to see all the new names here. I don't have it in me right now to respond helpfully. Hopefully I will feel differently when I get back from wherever it is I am going:-)

    Take care,

    Sandy

  • mp327
    mp327 Member Posts: 4,440 Member
    #9
    sandysp said:

    Thank you everyone

    I really appreciate your input, everyone.

    I had this great big fight where I said F-you to my husband for the first time in our 22 years because he feels exactly opposite of all of you and he went to my Oncologist with me where she reitterated the "watch and wait" scenario that is our present strategy as proposed by the Pulmonologist. On the way home he really didn't mean to upset me by saying I was reading the reports too much, should stay off this board, etc. was catastrophizing, obsessive, etc. but you can imagine how wide eyed I was and how much I waved my arms around with a high pitched shriek telling him to "back off with his judgments", etc. He sounded so "in control and rational" I thought I would just brain him. People who haven't lived in our shoes don't understand how stressful this is. But the good news is I had been on this board just before going to the doctor with him and knew I wasn't alone in my feelings of frustration with that report. You knew how you would feel and that helped me immensely to own my feelings and advocate for myself.

    The doctor did say the only way they will know for sure what it is would be to take it out and slice it up but that would take an open lung procedure which the Pulmonologist has not yet called for. She understands that I feel stressed about this every three month watching but that the 2 millimeters it "grew" is not significant. It was always close to the vein of course, but I didn't know that until this last scan which was upsetting to suddenly see.The reason it is indistinguishable from the vein and difficult to measure, (it always was) she believes is because of its "opacity". She was surprised I have not been sick, though, as was the Pulmonologist since it looks like it could be "inflammation." I haven't had an inflammation in two years this coming June that I know of nor have I been coughing. I also do not have a single symptom of Bronchiachtisis, oddly enough which was another word that was thrown around for a while. It concerned me when they asked me at the Pulmonologist's office if I was coughing up blood because that's the first time they ever asked that question that I can remember.

    In any event, she says it is the call of the Pulmonologist. I know from this board, they usually review files on Mondays, though at MSKCC as a group, and we haven't had a Monday yet since the last scan. If there is any change, I am sure I will hear something. But I asked her to ask the Pulmonologist some questions for me about my concerns about what happens if . . . ?" (This is what upset my husband so much, I think).  So I am so glad you all support me also in taking this adventure trip. My husband apologized this afternoon and I appreciate that and I apologized back. 

    For now I have done all I can do and will just work and then take off. I really look forward to getting to the Southern East Coast Shoreline. I still don't have any itinerary and plan to keep it that way and don't have a clue yet where I will wind up as a destination. Virginia Beach? Wilmington, NC? Charleston, SC? Again so grateful I feel so much better than when I found myself a patient at MSKCC four years ago May 5th.

    Thanks again for your input. I am inspired by everyone and it was so good to hear from you. I will never forget how you took the time to help me once again all of you especially you Katherine. I can't imagine the surgery or chemo is any fun at all but we do what we have to do, don't we. Thanks for your input. We really need each other. I will check back in when I return but since I am still in no man's land, I think I will continue to give the board a rest for a while longer. It overwhelms me to see all the new names here. I don't have it in me right now to respond helpfully. Hopefully I will feel differently when I get back from wherever it is I am going:-)

    Take care,

    Sandy

    Sandy

    Thanks so much for your update.  You are right--we do what we have to do.  For now, I wish you safe travels and lots of time to clear your mind and recharge.  I will look forward to your next update.  Take good care, my sweet friend, and enjoy the drive!

    Martha

  • sephie
    sephie Member Posts: 650 Member
    #10
    sandysp said:

    Thank you everyone

    I really appreciate your input, everyone.

    I had this great big fight where I said F-you to my husband for the first time in our 22 years because he feels exactly opposite of all of you and he went to my Oncologist with me where she reitterated the "watch and wait" scenario that is our present strategy as proposed by the Pulmonologist. On the way home he really didn't mean to upset me by saying I was reading the reports too much, should stay off this board, etc. was catastrophizing, obsessive, etc. but you can imagine how wide eyed I was and how much I waved my arms around with a high pitched shriek telling him to "back off with his judgments", etc. He sounded so "in control and rational" I thought I would just brain him. People who haven't lived in our shoes don't understand how stressful this is. But the good news is I had been on this board just before going to the doctor with him and knew I wasn't alone in my feelings of frustration with that report. You knew how you would feel and that helped me immensely to own my feelings and advocate for myself.

    The doctor did say the only way they will know for sure what it is would be to take it out and slice it up but that would take an open lung procedure which the Pulmonologist has not yet called for. She understands that I feel stressed about this every three month watching but that the 2 millimeters it "grew" is not significant. It was always close to the vein of course, but I didn't know that until this last scan which was upsetting to suddenly see.The reason it is indistinguishable from the vein and difficult to measure, (it always was) she believes is because of its "opacity". She was surprised I have not been sick, though, as was the Pulmonologist since it looks like it could be "inflammation." I haven't had an inflammation in two years this coming June that I know of nor have I been coughing. I also do not have a single symptom of Bronchiachtisis, oddly enough which was another word that was thrown around for a while. It concerned me when they asked me at the Pulmonologist's office if I was coughing up blood because that's the first time they ever asked that question that I can remember.

    In any event, she says it is the call of the Pulmonologist. I know from this board, they usually review files on Mondays, though at MSKCC as a group, and we haven't had a Monday yet since the last scan. If there is any change, I am sure I will hear something. But I asked her to ask the Pulmonologist some questions for me about my concerns about what happens if . . . ?" (This is what upset my husband so much, I think).  So I am so glad you all support me also in taking this adventure trip. My husband apologized this afternoon and I appreciate that and I apologized back. 

    For now I have done all I can do and will just work and then take off. I really look forward to getting to the Southern East Coast Shoreline. I still don't have any itinerary and plan to keep it that way and don't have a clue yet where I will wind up as a destination. Virginia Beach? Wilmington, NC? Charleston, SC? Again so grateful I feel so much better than when I found myself a patient at MSKCC four years ago May 5th.

    Thanks again for your input. I am inspired by everyone and it was so good to hear from you. I will never forget how you took the time to help me once again all of you especially you Katherine. I can't imagine the surgery or chemo is any fun at all but we do what we have to do, don't we. Thanks for your input. We really need each other. I will check back in when I return but since I am still in no man's land, I think I will continue to give the board a rest for a while longer. It overwhelms me to see all the new names here. I don't have it in me right now to respond helpfully. Hopefully I will feel differently when I get back from wherever it is I am going:-)

    Take care,

    Sandy

    we understand

    sandy,  have a great trip..... i know exactly how you feel about hubby thinking your dwelling on this too much....( i keep most of my fears to myself).....they cannot even begin to know the anxiety, fear, etc..... i am like you in that i do want to know all the info and the what if's......  hugs to you..... be safe...... sephie

  • Lorikat
    Lorikat Member Posts: 681 Member
    #11
    sandy, i have been known more

    sandy, i have been known more than once to take time away from my everyday life.  My husband is wonderful at understanding my need for "me" time.  It puts my soul at rest.  Depending on where I go, I may take my dog with me.  Walking a dog gives a reason to be out walking in a different area....  Take your time and feel good!  Hugs 

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