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New and concerned about PET suv


Willa

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Chest CTs showed lung lesions/nodules 2-3 cm.  PET suv was 5.9 on left upper lobe paramediastinal .  Spiculated edges.   Needle biopsy not successful for evaluation.  Any reasonable chance that this is not malignant?

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Hi Willa and welcome. There's always a chance that this is not malignant, but it looks pretty suspicious.  I think that SUV  generally points tp malignancy. And spiculated suggests cancer. But without a biopsy, you can't be sure.  Do you have a pulmonologist and if so what is his/her recommendation ? Are they able to try for another needle biopsy? I had a nodule that couldn't be biopsied without surgery because of its location.   It didn't light up  at all on the PET scan. A repeat CT scan showed it was growing, but slowly, and small, slow growing tumors sometimes show nothing in the PET. Given my history of other cancers, I opted for a lobectomy by VATs (video assisted thorascopic surgery) and it turned out to be a non-small-cell lung cancer, stage 1a. The surgery was easier than I thought it would be and my recovery was pretty fast.. I have no evidence of disease (NED) 3 years later.  Early stage lung cancer is highly treatable.

Please let us know what other questions you may have and how we can support you. 

Briidget O

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Thank you Bridget!  I don't feel like such an idiot now about feeling that it is cancer.  My pulmonologist gave me two choices:  referral to a surgeon; or another CT in January to see the rate of growth if any.  I chose door number two.  The expert radiologist had his shot at the needle biopsy of the nodule and missed, had me vomiting blood, and my pulse rate got low under twilight anesthesia.  Have COPD and have had it for a while.  Not in any rush to have my lung worked on, even by VATS.  Also, don't really have anyone who can take care of me if something goes wrong.

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Hello @Willa   I’m sorry to hear about the nodule.  What you’ve mentioned is suspicious.  I watched one for a year with no growth and very low SUV.  It was too small for a biopsy.  In the end my doctor recommending a wedge resection to remove it.  It turned out to be cancer and they proceeded with a lobectomy.  I’ve made a full recovery and haven’t needed any follow up treatment.  Watching your nodule is a reasonable approach.  

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Thanks Curt.  Reading about your case and Bridget's is encouraging.  So pleased that each of you has had successful surgery and are doing very well.  Glad to know that my plan of action course was reasonable.  Was it stressful to wait and watch your growth for a year?  Did you have a good way to handle the waiting time?  So far, I'm like a dog chasing its tail.

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I'll have CT in March, watching ~3 nodules.  This follows right lung middle lobectomy (May 22, 2019) which had an adenocarcinoma, stage 1.  Have been doing more or less o.k. not dwelling on upcoming CT March 2020 -- but I think I negative thoughts could start creeping in.  Am seeing a therapist at the cancer institute, which helps a great deal.  Also trying to stay busy, socializing with family & friends.  Husband has prostate cancer -- in remission for the time being -- but we know it can rear it's beastly head any time. . .

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Hi Irka!  Thanks for your response.  Your thoughts about handling the waiting time sound good to me.  I don't think I'm staying busy enough.  Have been enjoying time with family and friends.  Wishing you the best possible results on the nodules you are watching.  Hope your husband can stay in remission.  Impressed by the difficult journey you have been traveling.

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Hi Willa, I have a 9mm slightly spiculated nodule in left lung, caught by chance on ct last December.   I had a pet 3 weeks later with no Uptake.  I got a pulmonologist and did another ct in April and Aug. with no growth, so considered stable and next scan is end of feb.  now with that said how does this affect my mental state, at first I freaked out ever day and was a complete mess but after talking to my pulmonologist and the nodule staying stable I started just forgetting about it.  Fast forward today and last two weeks I have had pain in left chest like it’s sore so once again I’m completely freaked out yet I go back to what my pulmonologist said that I would never feel anything from a small nodule and I tried to calm down and think about what I’ve been doing differently and I realised I’ve increased my upper body workout and I’m just sore from that.  Our minds can play funny tricks on us.  I would see what next ct scan shows and if it has grown and since it did light up on the pet I would choose to have it removed, keep us updated and stay strong, the people on this forum are amazing.  Love and light ❤️

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Lisa,

Yes, the waiting & worrying & every pain in between is dreadful.  But you're doing great.  And as I understood when I re-read your opening lines, the nodule did not "light up" on the PET & showed no growth in following April & Aug CTs.  That's highly encouraging.  If the CT you get in Feb shows any significant change, I think your pulmonologist might want to order another PET to follow up.  In my case, my pulmo was following nodule(s) in my lungs for several years, some of which waxed & waned, so decided to hold off doing any biopsies.  Unfortunately, we dropped the ball for various reasons & didn't have scans for a 3-year period.   Big mistake -- those scans showed significant changes on CT & the follow-up PET showed one nodule in my right lung with quite high SUV of 6.4 -- it was removed in a middle lobectomy:  adenocarcinoma stage I.  Now we're tracking a couple of remaining nodules -- CT scheduled for March.  So for me, too, it's a wait & see situation, but we will be sure to keep checking up faithfully.  I think that's all you can do.  However, if you experience any pain(s) or other changes that you can't explain, be sure to talk to your pulmonologist asap.  Best of Luck!

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Hi Willa,

My mother has two nodules, 6mm and 9mm with some SUV uptake that we’ve been watching for about a year.  The medical team attempted to biopsy, with insufficient tissue they did a blood biopsy which was unremarkable.  A surgeon recommended surgery, a second opinion contradicted the recommendation. With the blessing of my mother’s oncologist we continue in the watch and wait program. She’s closely followed so if there are any changes, she has for time being opted for the mother load of all available treatment- surgery, chemo and whatever else.   In the meanwhile she’s out doing her thing.  

Many people who live on their own can manage cancer treatment with the help of a resourceful social worker at the cancer center.  There are options in the community, please don’t let that deter your decision.  
 

Michelle
 

 

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Hi Michelle...  

Thanks for your message.  Pleased to hear that your mom is out and about and living her life.  I'm encouraging myself to do the same.  Unfortunately, right now I'm feeling somewhat anti-social, so I'm not going to my friends for support.  But, that can change.  Tomorrow, I have an appointment for a spa pedicure and plans to choose a fun color of polish.  Since I'm not diagnosed with anything other than a spiculated solitary lung nodule and don't have an oncologist, am depending on my primary care doctor and pulmonologist.  Both are excellent, so I can't complain.  Best wishes for your mom, you, and your family.

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Hi Lisa...

Thanks for your message.  It dawned on me that there is nothing too weird about freaking out.  For me, the worst is not knowing.  I believe I'll be better when the Jan. CT is over.  Hope your stress is somewhat alleviated by the size of the nodule, and your doctor's reassurance that it isn't causing pain.  That said, I've had left and central chest pain which doesn't seem to have a thing to do with lungs or heart.  The left chest pain was an aneurism that has been repaired.  The central chest pain was GERD.  It is not a problem with the use of antacids and a low acid diet.  Of course, my favorite spaghetti sauce is one of the worst offenders.  Since you have found a reasonable explanation for your pain, that is the one I'd go on for now.  But, things like this are what your doctor is for.  If the pain continues, he/she is there for you.  Best thoughts coming your way!

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