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Late effects to lungs - check!

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

Got a preliminary written report on my CT Thorax from my oncologist (still not the lung doc) which stated two conclusions of note: (1) Multiple nonspecific pulmonary nodules measuring up to 4 mm in the right upper lobe, and (2) Biapial ground glass opacities, likely representing postradiation change.

First response - Eeeeeek!  'How can one know that these represent post radiation changes, you ask?' Well, I asked, anyway, so I started searching on Google. Apparently this is a very common side effect; so common that they can typically match the scarring to the very radiation fields that caused them.  Internet sources note that such scarring can result from radiation levels as low as 30 or 40 Gy (I received 68.4 Gy, both sides). And, the lung fibrosis develops slowly, over a period of 6 to 24 months.  Oh, wait,... that's  me.

Ah, the gifts that keep on giving.  Christmas every day...

Deb

Ladylacy
Posts: 493
Joined: Apr 2012

My opinion, I would have them checked.  My husband had them and guess what, he had a needle biopsy due to location after the PET/CT scan showed them, and it is cancer.  His were small and at first they didn't want to do a needle biopsy, justed wanted to watch them, but our H&N specialist insisted on the needle biopsy.

Radiation and chemo are the gifts that just keep on giving.

Sharon

phrannie51's picture
phrannie51
Posts: 3784
Joined: Mar 2012

Did you have symptoms of something, in order for them to order a CT Thorax....or is this part of their regular protocol?  I've got a scan coming next week, but it's only of the head and neck....and to me, it seems silly that they don't keep an eye out on a person's lungs with this disease.....but they don't do that here. 

p

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

My Insurance fought over the two-year PET-CT, and denied the three-year PET-CT.  Stanford and my local doc were very reassuring that they would be able to identify a cancer recurrence in the head/neck area via scoping and palpating and prodding.

The two-year scan showed lung nodules that I was concerned about, and I asked several times about the possibility of metastises to the lungs, as that is the most likely location for such to show up.  So, the doctors ordered the CT Thorax and then my Insurance balked over that for three months.  Finally approved.

Deb

phrannie51's picture
phrannie51
Posts: 3784
Joined: Mar 2012

Looks like I may be in for a little fight with the insurance company.....but that's ok....better a fight with them than C....I want my lungs checked....symptoms or not....I smoked for far too many years, to have this worry hanging over my head all the time....the anxiety itself can make a person short of breath...Smile 

p

hwt's picture
hwt
Posts: 1967
Joined: Jun 2012

I'm coming due 04/01 for another scan. Prior CT scans were eyes to thighs but as I understand it, this one is cut back to head/neck and chest, so atleast they are continuing to include the chest. I had1 PET initially and one post tx and then told I would not be getting any more. Doesn't seem to be a protocal, they all seem a bit different.

KTeacher
Posts: 951
Joined: Jan 2011

Since I have never gotten past the one year mark, and we have the same insurance and both have doctors at Stanford, I appreciate your sharing about having to fight the insurance company.  It will be interesting to see what happens when I am officially retired, I haven't been with the school district long enough to keep insurance in retirement.  Not sure about energy for that fight,but I know it is coming.

It sounds like the doctors aren't worried, so that is good.

Bev

Crazymom's picture
Crazymom
Posts: 300
Joined: Nov 2011

they do not check my lungs either.  I am having my 1 year CT skan on Mar 27.  I will ask about it.  Ann

debbiejeanne's picture
debbiejeanne
Posts: 2506
Joined: Jan 2010

i only have pet scans.  should i also be asking to have a ct scan?  is one better than the other?  why do some get them and others dont?  I appreciate any advise you can provide.  thank you in advance.

God bless,

debbiejeanne

jtl's picture
jtl
Posts: 420
Joined: Sep 2011

My Med Onc always orders PET/CT combination eyes to thighs. From what I recall lungs are a primary target for metasis.  I recently was told by my ENT that he no longer is concerned about recurrance of the original cancer but rather a new primary.  Never thought about that.  In fact I go in tomorrow morning for my scan, low carb diet tonight.  Best to all of you.

John

debbiejeanne's picture
debbiejeanne
Posts: 2506
Joined: Jan 2010

John, thank you for the info.  It's funny you say that about the original cancer b/c they have seen spots on my lungs since my c.  they said it was nothing to worry about but now i'm not so sure.  this isnt the first post i've seen about spots showing up in the lungs.  it's kinda scary.  oh, well, guess i'll just go by the saying here, it isn't anything until they say it is.  thanks again.

God bless,

debbiejeanne

denistd's picture
denistd
Posts: 509
Joined: Apr 2009

I too have had pet scans for the first three years then just started CT scans of head neck and lungs, I had nodules dating back to 209, just found that out. In September the scan showed a nodule had increased in size and was of ground glass opacity. Onco said I could wait six months and then get a new scan or get a biopsy, I elected the biopsy, turns out it would be a needle biopsy, that turned out to be inconclusive, lung doc said I could have surgery to remove the thing or wait a little longer, I opted for the surgery. Turns out that it was a new primary, adeno carcinoma. It was removed. went back two weeks ago for new scan and meet with Professor Toth. I still have other small nodules (2), the one removed was a newer one, it was one centimeter in size. The scan showed all clear and go back again in 6 months, if you have nodules that are not calcified a watch should be kept, calcification means the nodule has calciumed up and does not need to be followed. If you don't know whether it is or not, ask your pulmonary doc. Denis

debbiejeanne's picture
debbiejeanne
Posts: 2506
Joined: Jan 2010

dennis, thank you for the info.  i'm glad all worked out well for you  :0)    I'm sure mine is nothing but we'll watch it just to be safe.  thanks again.

God bless,

debbiejeanne

denistd's picture
denistd
Posts: 509
Joined: Apr 2009

The professor explained it to me this way, this particular nodule showed up in May of 2012 while I was in a local hosptal for a check up my heart. It was 4mm in size. She said that a nodule becomes suspicous if it doubles in size over a relatively short period, 6 months to a year. If it stays at 4mm, and is not calcified it is still safe to assume it is still just a nodule and not cancerous, the doubling in size (mine went from 4mm to 10mm) she e-mailed all of my radiplogy reprts for the past 4 years, fascinating stuff they look at, everything, size of heart, aorta. kidneys. liver and on and on. I feel really good about the outcome, one centimeter is really small, not even up to a mass description, she said they caught it really, really early and the prognosis is really good, but it jumped up on me in 6 months and I will be vigilant and ask lots of questions. Early is the way to find it. Denis

debbiejeanne's picture
debbiejeanne
Posts: 2506
Joined: Jan 2010

dennis, thank you again.  i don't even remember what was said about size or if it was even mentioned.  i'm not one who can think of questions to ask and that's why i come here.  my csn family helps me know what to ask.  now when i go back to my ent, i'll ask him about the spots.  i'm still really stupid when it comes to all of this and knowing the questions to ask.  it's funny, i can throw the questions out there like nothing when i'm dealing with a loved one or friend, but can't think of what to ask concerning me.   hopefully, one day, i'll outgrow that.

God bless,

debbiejeanne

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