Results of PET

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.

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 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

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!

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!

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