Results of PET

ACinNC

It's always so good to see NED when someone reports on their latest scan.  It  didn't  happen to me though. Sigh! I haven't  gone over the results with my once yet.  That will happen on next week.  But I pulled down my results from the patient portal and saw for myself.  Looks like Mets to lung.  I have scheduled a visit today for MD Anderson with Dr Eng in Aug.

A separate issue is very bad abdominal pain, losing weight and feeling unwell. I see my CR surgeon next week also.  I hope it's only adhesions as the PET/CT did not show anything of concern there.

I'm  in for a long weekend waiting . That's all I can do.

 

eihtak

ACinNC...

Oh no! I'm so sorry as we all know the possibilities can go either way, but lets face it...we're really only ok with hearing NED.

Firstly, are you sure you read the report correctly...is it possible you did not?

But if you are not wrong, know that we are still here with you and while anything you hear for a few days will likely be a blur we'll still be here when the fog lifts! If it brings you any peace (and I hesitate because we all have our own unique journeys) over 3 years ago I was in your boat! After 4 years of NED on anal cancer, I went in for a follow-up scan feeling mostly well only to be told I had a mass the size of a peach on my lung. It was not until the biopsy that it was confirmed anal cancer mets. I have also been treated for breast cancer so considered that or even a 3rd primary cancer!

My treatment was a lobectomy to remove the lobe of my lung that contained the mass followed by an aggressive course of Cisplatin/5FU. It was tough yes, but the recovery again was rather quick and I have since been great! (I too get scanned later in July so am praying that continues)

Please know that you will most surely be in my thoughts and prayers over the weekend and onward that you are able to find some moments of positive peace and less worry of what is really out of our hands.

katheryn

ACinNC

eihtak said:

ACinNC...

Oh no! I'm so sorry as we all know the possibilities can go either way, but lets face it...we're really only ok with hearing NED.

Firstly, are you sure you read the report correctly...is it possible you did not?

But if you are not wrong, know that we are still here with you and while anything you hear for a few days will likely be a blur we'll still be here when the fog lifts! If it brings you any peace (and I hesitate because we all have our own unique journeys) over 3 years ago I was in your boat! After 4 years of NED on anal cancer, I went in for a follow-up scan feeling mostly well only to be told I had a mass the size of a peach on my lung. It was not until the biopsy that it was confirmed anal cancer mets. I have also been treated for breast cancer so considered that or even a 3rd primary cancer!

My treatment was a lobectomy to remove the lobe of my lung that contained the mass followed by an aggressive course of Cisplatin/5FU. It was tough yes, but the recovery again was rather quick and I have since been great! (I too get scanned later in July so am praying that continues)

Please know that you will most surely be in my thoughts and prayers over the weekend and onward that you are able to find some moments of positive peace and less worry of what is really out of our hands.

katheryn

Your mass the size of a peach

Wow. That was a big one. Do you know how long it was growing?  During the 4 years of NED did any scan show evidence of It?

I have 2 areas.  One nodule at the base grew from 2mm to 4 mms in 6 months. But the area I am more concerned is an avid node in the hilum. It remains to be seen but I assume a bronchospy will be needed to biopsy it.  The wording on the report for both areas suggest mets. CT scans bt themselves aren't reliable.  Or at least the interpreter is not.  The scan 6 months ago did not mention the 2 mm nodule.  It wasn't  untill the PET that they went back and looked for it. Also, last year with my diagnosis, a second opinion doctor mentioned a lung nodule but my 2 oncs did not find it when they looked at the scan.

After your lobectomy and chemo, how often were you scanned?.  I am praying your July scan will be NED. 

PS I am a BC survivor as well.

mp327

ACinNC

So sorry you did not get the all clear on your scan.  I'm glad you'll be seeing Dr. Eng, as she is the leader, IMO, in treating anal cancer mets.  Please let us know when you get scheduled to see her.  In the meantime, I send good thoughts and prayers for you.

eihtak

ACinNC said:

Your mass the size of a peach

Wow. That was a big one. Do you know how long it was growing?  During the 4 years of NED did any scan show evidence of It?

I have 2 areas.  One nodule at the base grew from 2mm to 4 mms in 6 months. But the area I am more concerned is an avid node in the hilum. It remains to be seen but I assume a bronchospy will be needed to biopsy it.  The wording on the report for both areas suggest mets. CT scans bt themselves aren't reliable.  Or at least the interpreter is not.  The scan 6 months ago did not mention the 2 mm nodule.  It wasn't  untill the PET that they went back and looked for it. Also, last year with my diagnosis, a second opinion doctor mentioned a lung nodule but my 2 oncs did not find it when they looked at the scan.

After your lobectomy and chemo, how often were you scanned?.  I am praying your July scan will be NED. 

PS I am a BC survivor as well.

AcinNC...

Hi,

Yes it was big, maybe a small peach but that was how it was described. I'm not at home right now but tomorrow or Saturday I'll look up my records and let you know more details. After initial treatment I was scanned every 6 months for (I think ) 3 years. I believe that after 3 years NED I was scanned yearly so no symptoms until scan to indicate how long the mass was growing other than NOT seen the previous year. 

For the first year after the lung surgery/chemo I think I was scanned every 6 months, then it was 9 and then some rescheduling but about a year. I think there is some concern over the amount of radiation and scans I have had in dealing with 2 primary and 1 mets, yet, I truly felt pretty good and would not have guessed the mass was there without the scan. It scares me a little that the scans themselves may lead to further issues, but for at least now, have agreed to yet another.

On one of the "after lung mets" scans there was an area of concern on my kidney...a very small nodule. I had an ultrasound that led to a "within normal condition" type wording lol, and it has been unchanged on following scans.

As long as I'm feeling well and my bloodwork is all normal, I try not to focus too much on the potential for further problems...until........scan time creeps up! Seems to be that thing thats always lurking somewhere on the back of my mind I guess.

Keep in mind that different interpeters do use different verbage and that can cause confusion. I have asked to have the same one read my scans and am told they would note my request but difficult to do, however, I save the hard copies and have seen the same name several times.

When (if you don't mind was your breast cancer and what kind?)

I'll fill you in with better details this weekend.

katheryn

sandysp

lung info

Hi AC in NC

I have not been on this board in a long time. I was treated for AC in 2011 and like you never got an NED since there were issues with my lung. For a while I was scanned every three months because it got larger at one point but when it stabalized went back to yearly scans. 

It was 2.9 centimeters last year but this year on April 28th, it was 3.3 centimeters and changed shape from oblong to round and it got thicker. Then they did a PET scan which for the first time showed it lighting up, not to the point where it would determine absolutely cancer but very close to that bar where it is likely cancer. 

I go back on July 18th for a follow up scan. I was stunned the scans came out like this since it had been stable for so long. But I feel fine and to me my health is far better than it was when I was diagnosed with AC.

Most people wind up having these things on the lung removed by VATS, and a clear determination made with good outcome and virtually no down time, but because mine is located under my heart, in the mediastinum, that procedure is not possible for me.  A very tough thorasic surgery is the only way to get at it. A met has been pretty much ruled out in my case though and instead I believe we are looking at a new primary that is from a lesion that was there for a long time before my diagnosis. It could be benign also. It remains a mystery, but I think it likely is not related to AC. Unfortunately, even if it is benign, it can't be allowed to keep growing so at some point I could be facing the surgery either way

My husband had a kidney problem this year and found out in the process he has a couple of nodes on his lung in the 1-2 mm range. It turns out they are quite common and often are not serious.

I know we all want a clean NED but here I am writing about this seven years after my last treatment and feeling good today. I had a squamous cell skin cancer, but apparently that isn't related to the AC either. There are a lot of people who get those and it didn't show up until this year. I was so sick when diagnosed with AC, I didn't anticipate I would live this long! Especially after the treatment when I felt so fatigued for so long. I did change my lifestyle and am glad I have less stress as a result.

Take good care of yourself and focus on the day. I find scanxiety to be a very real thing I need support getting through. Keep coming back to this board. They same people who responded to you were there for me a few years back when I was fearful, like I am again, admittedly. You are in good hands.

Hang in there,

Sandy

mp327

sandysp said:

lung info

Hi AC in NC

I have not been on this board in a long time. I was treated for AC in 2011 and like you never got an NED since there were issues with my lung. For a while I was scanned every three months because it got larger at one point but when it stabalized went back to yearly scans. 

It was 2.9 centimeters last year but this year on April 28th, it was 3.3 centimeters and changed shape from oblong to round and it got thicker. Then they did a PET scan which for the first time showed it lighting up, not to the point where it would determine absolutely cancer but very close to that bar where it is likely cancer. 

I go back on July 18th for a follow up scan. I was stunned the scans came out like this since it had been stable for so long. But I feel fine and to me my health is far better than it was when I was diagnosed with AC.

Most people wind up having these things on the lung removed by VATS, and a clear determination made with good outcome and virtually no down time, but because mine is located under my heart, in the mediastinum, that procedure is not possible for me.  A very tough thorasic surgery is the only way to get at it. A met has been pretty much ruled out in my case though and instead I believe we are looking at a new primary that is from a lesion that was there for a long time before my diagnosis. It could be benign also. It remains a mystery, but I think it likely is not related to AC. Unfortunately, even if it is benign, it can't be allowed to keep growing so at some point I could be facing the surgery either way

My husband had a kidney problem this year and found out in the process he has a couple of nodes on his lung in the 1-2 mm range. It turns out they are quite common and often are not serious.

I know we all want a clean NED but here I am writing about this seven years after my last treatment and feeling good today. I had a squamous cell skin cancer, but apparently that isn't related to the AC either. There are a lot of people who get those and it didn't show up until this year. I was so sick when diagnosed with AC, I didn't anticipate I would live this long! Especially after the treatment when I felt so fatigued for so long. I did change my lifestyle and am glad I have less stress as a result.

Take good care of yourself and focus on the day. I find scanxiety to be a very real thing I need support getting through. Keep coming back to this board. They same people who responded to you were there for me a few years back when I was fearful, like I am again, admittedly. You are in good hands.

Hang in there,

Sandy

Sandy!

OMG!  I nearly fell over when I saw your reponse in this thread!  It has been a long time since we've heard from you--you have no idea how many times I have thought of you and wondered how you were doing.  I do remember you finding out you had a lesion in your lung--I'm really sorry to hear that the bugger has grown and is not in a location that would allow for VATS.  I certainly hope that you will not need surgery anytime soon, but if you do, may it all go well for you.  I hope that the pathology will show it to be benign when the time comes to have it removed.  You have been through so much, it just seems unfair that now you are dealing with this. 

I have really missed you on this board.  Your support of me through my ups and downs was so helpful--you always seemed to know the right thing to say to lift me up.  I'm glad you are back, but sorry you are facing another health issue.  Please know that you will be in my thoughts and prayers, my friend, and I hope you'll keep us posted on what the plan is after you see the doctor on the 18th.  Big hugs to you!

Snsjbird

So I’m very new to this so

So I’m very new to this so please excuse me.  I had a ct scan for andomoral pain bloating chest pain.  On that scan they ended up finding several nodules.  I was sent straight to a specialist and he ordered a ct scan on lungs.  3 days later I get a call from office saying forget my follow up appt on Thursday that a pet scan is being ordered.  I went into shock and did not ask questions.  Called back and nurse said a non calcified module but that’s all the info she had!!!  But she left a message for doc.  I’m just worried cuz this was all in a matter of two weeks going on 3.  Should I be worried ?  

sandysp

mp327 said:

Sandy!

OMG!  I nearly fell over when I saw your reponse in this thread!  It has been a long time since we've heard from you--you have no idea how many times I have thought of you and wondered how you were doing.  I do remember you finding out you had a lesion in your lung--I'm really sorry to hear that the bugger has grown and is not in a location that would allow for VATS.  I certainly hope that you will not need surgery anytime soon, but if you do, may it all go well for you.  I hope that the pathology will show it to be benign when the time comes to have it removed.  You have been through so much, it just seems unfair that now you are dealing with this. 

I have really missed you on this board.  Your support of me through my ups and downs was so helpful--you always seemed to know the right thing to say to lift me up.  I'm glad you are back, but sorry you are facing another health issue.  Please know that you will be in my thoughts and prayers, my friend, and I hope you'll keep us posted on what the plan is after you see the doctor on the 18th.  Big hugs to you!

It is good to see you too

i took a break coming on to here to deal with other health things. After I went deaf in one ear and was diagnosed with an inherited immune deficiency called CvID, I began getting treatments of IgG monthly. Even my chronic pain left me and I got healthy. So I was shocked to get the last pet scan and CT scan Show the lung problem got worse, larger, and thicker and round since a year ago. I am grateful I did not have to make any decisions but just come back in three months. Then I got a squamous cell skin cancer on my thigh which grew aggressively and was painful. It was my third squamous cell cancer but the first one I ever saw since it was on my leg and it was really really ugly. It was removed a couple of weeks ago and I have a long scar with a valley in my thigh but no further treatment for it.So while I was getting that taken care of it distracted me. Wednesday I will learn if any changes happened in my lung.the lesion is under my heart and just above the pulmonary vein so I have been told it is a very tough thorasic surgery and long recovery. No one will want to do it until it is proven absolutely necessary since it is dangerous to do the procedure. As long as I am not symptomatic, I don’t believe they will operate. But my doctor says if it keeps growing some decision will have to be made eventually. I am More than a little blue trying not to obsess but feel prepared this could go either way. Maybe it will improve.

you sound good. I am glad your diet is working betteR. I make a smoothie with frozen dark sweet cherries, a bananna, chocolate peanut butter powder, green vibrance , almond milk  dark cherry concentrate and organic psyllium husks.  everything is running smoothLy so far.i avoid grains, except brown rice products, acidic foods and choose foods best suited for 0 blood types to prevent and treat inflammation.i learned to not exercise until sore. So I do tai chi and chi Gong.I have retired from my stressful job and just work part time as a singer still. Yum! 

Pease do say a prayer for me Wednesday. I would like to go on living normally.

sandy

mp327

sandysp said:

It is good to see you too

i took a break coming on to here to deal with other health things. After I went deaf in one ear and was diagnosed with an inherited immune deficiency called CvID, I began getting treatments of IgG monthly. Even my chronic pain left me and I got healthy. So I was shocked to get the last pet scan and CT scan Show the lung problem got worse, larger, and thicker and round since a year ago. I am grateful I did not have to make any decisions but just come back in three months. Then I got a squamous cell skin cancer on my thigh which grew aggressively and was painful. It was my third squamous cell cancer but the first one I ever saw since it was on my leg and it was really really ugly. It was removed a couple of weeks ago and I have a long scar with a valley in my thigh but no further treatment for it.So while I was getting that taken care of it distracted me. Wednesday I will learn if any changes happened in my lung.the lesion is under my heart and just above the pulmonary vein so I have been told it is a very tough thorasic surgery and long recovery. No one will want to do it until it is proven absolutely necessary since it is dangerous to do the procedure. As long as I am not symptomatic, I don’t believe they will operate. But my doctor says if it keeps growing some decision will have to be made eventually. I am More than a little blue trying not to obsess but feel prepared this could go either way. Maybe it will improve.

you sound good. I am glad your diet is working betteR. I make a smoothie with frozen dark sweet cherries, a bananna, chocolate peanut butter powder, green vibrance , almond milk  dark cherry concentrate and organic psyllium husks.  everything is running smoothLy so far.i avoid grains, except brown rice products, acidic foods and choose foods best suited for 0 blood types to prevent and treat inflammation.i learned to not exercise until sore. So I do tai chi and chi Gong.I have retired from my stressful job and just work part time as a singer still. Yum! 

Pease do say a prayer for me Wednesday. I would like to go on living normally.

sandy

Sandy

Thank for you the additional update and more details about the lung tumor.  I hope that thing does not have anymore growth spurts and that surgery can be put off for as long as possible.  It sounds risky.  I'm glad to hear the skin cancer was removed successfully and requires no further treatment.  Gosh, you are such a trooper!

I'm glad to hear you are no longer working and doing the things that you enjoy and make you feel better.  As for not exercising to the point at which it makes you sore, I have done the same thing.  I have been a runner for years, but after finding out that my osteoporosis in the hips and spine and knee pain was worsening, I finally stopped and switched to walking.  The upside is I don't hurt as much.  The downside is my workouts take twice as long.  I've just had to rearrange my days to allow time.  My diet could be much better. I confess.  I am still working on improving that.  Overseeing my mother's care influences so many things now, reminiscent of when I used to work full-time and took all kinds of shortcuts in my daily routine.  I know I can do better!

I know you must be anxious to know what the doctor says on Wednesday.  I really hope and pray that the news will be encouraging and that you do not have to schedule surgery.  I can only imagine your worry and anxiety.  I know you have top-notch doctors and that you are in good hands, but it's hard not to be worried.  I will definitely be keeping you in my thoughts and prayers and hope that you'll come back here to let me know what you found out.  Please take care, my friend!  Hugs!