CSN Login
Members Online: 4

PET scan clear....but....

biggles1955
Posts: 15
Joined: Jun 2012

Bugger. 11mm hotspot on left lung. Anyone else had similar misfortune?

phrannie51's picture
phrannie51
Posts: 3672
Joined: Mar 2012

experience just recently...I'm sure they will comment...sending positve thoughts that it's just left over residual from the treatments.

p

luv4lacrosse's picture
luv4lacrosse
Posts: 1385
Joined: Jul 2010

Had a re currance from an almost 2 year NED run of SCC of the right tonsil, METS to 34 nodes in neck.
I was hospitalized in August with a Cellulitis and after a scan it was discovered I had 3 spots about 1.2 CM in my Right Lower Lobe. Was going to have the lobe removed when they decided to do a PET and had 3 spots light up in my Mediastynum, NOT GOOD as they are in my Lymphatic Sysyem.

I am now considered treatable, but no longer cureable. I just finished my 6th week of a 24 week chemo cycle consisting of Erbitux evry Monday, and every third Monday, Carboplatin and a 96 hour infusion of 1,000 MG of 5FU or the dreaded "manpurse."

I am happy to report that my 6 week scan showed that the tumors were still 1.2 CM, but had changed in appearance resembling a "ground glass" appearance. That is good as the tumors seem to responding well to the treatment.

METS to the Lung is no longer considered a death sentence. You should be able to find a treatment or surgery regiment that will work for you.

Is it in your Lymph System, or just in the Lung Tissue? If not in the Lymph System, surgery should cure it.

Best

Mike

biggles1955
Posts: 15
Joined: Jun 2012

Thanks for the replies Phrannie and Mike. I was utterly gobsmacked when my Onc gave me the news along with the "all clear elsewhere". He is referring me to the Lung Specialist and expects that he will want to do a Biopsy to establish the exact nature of it. Such a pity......could be celebrating by now!

ratface's picture
ratface
Posts: 1235
Joined: Aug 2009

I have "multiple scattered lung spots" Four to be exact, in the 4mm range, and one on the thyroid. They have remained unchanged now for 3 years and counting. There are multiple reasons for lung spots that have nothing to do with cancer. This is your benchmark from this point forward. You are now in the "Unchanged" club (until proven different) vs. NED club. In the big picture there is really no difference. Wishing you histoplasmosis or some other possible lung ailment. Honestly, if they just stopped a municipal bus at random and scanned everyone, about 1/4 of them would have lung spots. Do not be surprised if they decide to just wait another 3 months and compare scans. It is entirely possible that your spot is totally unrelated to your disease. I do understand the anxiety but there are medications to deal with that aspect. Crossing my fingers and toes for you.

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

I hate the word "But". It wipes out everything said before that. My ex said "I love you BUT"

biggles1955
Posts: 15
Joined: Jun 2012

Thanks for the replies folks, much appreciated. I forgot to mention that the PET/CT scan also picked up "physiological uptake" in the sigmoid colon. I have since had a full colonoscopy during which they removed 2 small polyps that proved to be non cancerous. During my routine follow up with my onc ( scoped my bot and throat, everything normal!), I mentioned that I had heard nothing from the lung specialist. He said that he would speak with him after my visit.The next day I had a call from the Thoracic Surgeons sec to arrange a consultation  3 days later. The consultation was very straightforward. " Your PET/CT scan shows whole body sterile apart from this small shadow  in your lower left lobe. Surgery will be scheduled in 4 weeks time" !!!!! I nearly fell off the chair! I asked about VATS. He was aginst this for several reasons.The nodule is deep in the parenchema of the lung and not near the surface, hence vats would be difficult and open surgery would be the far better approach.. I asked about a biopsy. He replied that it would be pointless since this nodule should be excised anyway. I said that I needed a couple of days to think about it, to which he agreed. So I bit the bullet and agreed to go ahead, scheduled for 4th Feb, and pre op assessment this Monday. BUT, I am now having second thoughts. Quite honestly after googling like mad, this surgery scares the hell out of me. And after scanning the threads here I am even wondering if this "tiny" nodule is still there. I am surprised that another scan hasn't been done for comparison, the surgeon simply stated that he would arrange an x ray prior to surgery! I should add that this Surgeon is very highly respected and has pioneered minimally invasive muscle sparing thoracotomy. Am I doing the right thing???????

Ladylacy
Posts: 468
Joined: Apr 2012

So sorry to hear what you are going thru.  If you are unsure about treatment, the best thing to do, and I would, is to get a second opinion ASAP.  I know when my husband had his PET/CT in September after treatment for a second cancer, they found suspicious spots on his right lung plus fluid in the lining of the lung.  He followed up with 2 chest x-rays over the next 3 months and they were okay.  We are now awaiting the results of his PET/CT scan done this week.  We did get a second opinion before treatment was started for his second cancer and definitely felt better about the course of treatment that he underwent.

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Even though I've yet to even begin treatment I do understand your anxiety. I also Googled until I Doogled in my pants. Sorry you're having to endure the uncertainty yet again. 

Definitely get a 2nd opinion! When faced with treatment locally, I just felt uncomfortable. The way the hospital and doctors approached my diagnosis and treatment just didn't seem right. I sought a 2nd opinion and I'm SO glad I did. I feel much more comfortable and trust the team. Not only that but the attention and response has been night and day! Remember, when something doesn't "feel" right, there's usually a good reason why.

"T"

 

ausrebel53's picture
ausrebel53
Posts: 74
Joined: Dec 2012

Hi Biggles, not long ago I had a PET scan to see if my larynx cancer had migrated. The PET scan showed some hot spots in my lower chest and Lymph nodes under my arm. Consequently a Lymph node was removed from under my arm for a biopsy which came up no result, my radiation doc said 80% of the time this would be cancer of the lymph node. My chemo doctor said a positive result would be extremely unlikely as the wiring in the body would prevent cancer travelling from the neck to the under arm, it would be more inclined to travel to the brain if at all. You are wise getting two opinions, as you can see there are many ways of looking at a problem, I have to agree with the Chemo Doctor as statistics can be deceiving at the best of times and the wiring theory makes sense. Hope this is helpful.

I have to ask, did you get the name Biggles from the famous world war 2 pilot of comic fame? I'm going back 50 years now but I seem to remember eagerly looking forward to the next thrilling episode coming out of Lieutenant (pronounced Leftenant) J Bigglesworth, flying ace of the RAF, "chocks away, tally ho" and all that. Just curious, that is a name I heven't heard for half a century.  

biggles1955
Posts: 15
Joined: Jun 2012

I Know it's almost a year ago, but thanks for all the replies. Having researcghed the cardio Thoracic surgeon's credentials, I elected to go for open thoracotomy as he recommended. The intention was to get in there, have a good look perform a frozen section biopsy ( They do this whilst you are on the table!) The biopsy result was non -decisive ( If it were a NEW cancer the intention was to proceed with lobectomy, if it were a mets, remove close up and decide on further tratment) He decided to proceed with lobectomy, and I have to say that when I came round with all those tubes hanging out of my arms and neck, as well as a catheter, I just wished I was somewhere else!

anyway that's nearly 12 months ago. I had a pet/ct last month and NED !!!!!! And you know what? I am fitter than ever, swimmming daily, still on nicotine patches to do away weith the craving. I feel great, and grateful for the support here. We know it can be dealt with, but to newcomers ( as we all were) it's no less than bloody terrifying!!! God, I was scared of needles when I started this journey....

Gool luck to all !! Here's to a Healthy happy and prosperous 2014 for everyone!

 

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network