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New here and concerned for my mom


Joy Marie

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Hello, everyone.  My mom celebrated her 70th birthday this year and decided to have her lung health checked out.  She had a low dose CT of her lungs due to her age and smoking history.  10 days passed without any notification of the results.  She went to the radiology center herself and got the results.  Suspicious  I.4 x 1cm lobulated nodule in right lower lobe.  She called her Pulmonologist and set up a PET scan.  Results: Increased metabolic activity right lower lobe, pulmonary nodule 1.4cm x 1 cm with maximum SUV uptake 5.9.  No other hot areas defined including in lymph nodes.   She refused a biopsy wanting the nodule taken out by VATS surgery.  Her surgery is scheduled Sept 14th.  One of my first question is, why her doctors won't give her a diagnosis.  I'm researching and finding many cancers are found and even staged through PETS.  It's just worrisome.   Thanks for any responses.   Joy

 

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Hi Joy,

I'm sorry to hear about your mom.  My mom has lung cancer and it's tough to deal with sometimes.  My mom is a few years younger than yours and was diagnosed with lung cancer in 2015.  If your mom ends up having lung cancer, know that it is treatable and survivable.  You will likely meet some of the forum's active survivors soon.  

The reason why your mom's docs are not giving her an official diagnosis is that they don't know for sure that she has lung cancer and it's hard to accurately stage cancer just from looking at a CT.  Since she has not had a biopsy, it's hard to tell what the nodule is.  The reality is that most nodules are not cancer.  People can have nodules come and go in their lungs for a variety of reasons.  I'm not very familiar with SUV uptake, but I am sure someone will comment about it to give you an idea of what may be worrisome (if anything).  The only true way to know if a nodule is cancerous is through a biopsy.  This can also tell the docs what type of cancer it is and if there are any mutations.  By removing the nodule thru VATS, they will get a good tissue sample and be able to figure everything out from there.

Take Care,

Steff  

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Hi Joy Marie and welcome,

PET can be a useful tool but generally can't, by itself, determine whether something is cancer. My nodule, which was about the same size as your mom's and also in the right lower lobe, was discovered in a routine CT that was done to surveille for metastasis from an earlier non-lung cancer. The nodule didn't register on the PET scan at all and it couldn't be biopsied with a needle or bronchosope because of its location. Because the nodule had a suspicious appearance, taking it out was recommended. I had a VATS lobectomy and a bunch of lymph nodes removed at the same time. Nodes were negative but the nodule was adenocarcinoma, stage 1A. So PET isn't foolproof and, as Steff says, the only way to tell for sure if something is cancer is with a biopsy. 

By the way, I was 71 at the time of my VATs lobectomy. It was easier than I expected and I recovered fully and pretty quickly. Best wishes to your mom for a similarly fast recovery.

Bridget O

 

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Thanks Bridgette and Steff.  My mom is a young 70 but I've got her out walking so she'll get strong for her surgery.  Mom and I live together and take care of each other.  I only wish I knew what she is facing.  I hope someone can tell me what this SUV means.  Thanks again.   Joy

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Joy,

This is my basic understanding of SUV...

The SUV was created to determine whether a region may be considered “tumor” or “malignant”. An SUV of 2.5 or higher is generally considered to be indicative of malignant tissue.  SUV has a number of limitations. For tumors within the lung, respiratory motion can be a major source of error in SUV values.

But please know that an SUV score is only part of the overall picture and I honestly don't know how accurate they are.  Could your mom have lung cancer? Yes, if she has lungs. If your mom has lung cancer might it only be the 1 lung nodule? Yes. Could removal of the nodule take care of the issue? It's very possible.

Joy, now that I know how close you and your mom are, I understand what you are going through.  When my mom was first diagnosed, I wanted answers and I wanted them NOW.  She is my best friend and so much more.  I was broken for a long time.  Unfortunately, I did not find LUNGevity until my mom had a recurrence of her lung cancer.  These forums are so helpful.  We all know what you are going through because we have all been there in some form.  I understand your fear of the unknown. Cancer brings about that fear and throws it in our face when normally we can just ignore it and go about our day-to-day business.  It's good that your mom is a "young" 70 and that she is active with you.  The stronger she is, the better she will be able to battle lung cancer, if she does end up having it.  The initial diagnosis phase is the worst part for a lot of people.  Once you are told what it is and how it needs to be treated, things tend to calm down.  And if further treatment is recommended and once the rhythm of the treatment process is found, life gets even easier.  Nothing about lung cancer is enjoyable, but it is survivable and people can continue to live full lives despite it.  My mom still does all of the things she loves, while taking care of my disabled father, all while being active in lung cancer treatment.  We are here for you, Joy. Please feel free to reach out to us.

Take Care,

Steff

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Thanks so much.  I'm hoping the nodule was found early and maybe it's small, the surgery will get it out and she can continue to be watched for any further problems.  If anyone else has any insight please post.  I will keep my mom's condition updated.    Joy

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Joy,

SUV means Standard Uptake Value and is an indicator of the metabolic activity of tissue. The theory is cancer cells have higher metabolic rates than normal tissue. So the test records the amount of radioactive glucose attracted by body tissue. This “uptake” of glucose shows up as levels of brightness on the scan medium. For tissue with SUV of 2 or less, the likelihood of metastatic activity is low. Above 2 but less than 8, the tissue may be metastatic. Above 8, the tissue is very likely metastatic. The test is not a diagnostic tool in that it cannot reveal the type of tumor. It is not always accurate. I’ve had back-to-back tests with tumors showing high SUV returns on one test and lower on the next. Your mom’s 5.9 is something to be concerned about. But, the test is useful in determining the presence of metastatic activity throughout the body and while one tumor “lit up” no other areas were identified. 

A tissue biopsy examined by an pathologist is the method used to indentify lung cancer. Since no biopsy was performed, a diagnosis is not available. 

If it were me, with a tumor SUV of 5.9, a smoking history, and a biopsy could not be performed, I’d have surgery.

I hope this answers your question. 

Stay the course. 

Tom

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Thanks, Tom.  I'm a little encouraged with your info that SUV above 2 but less than 8 may be metastatic.  The PET scan report says consistent with malignancy.  If I want to parse those words I would think that's more of an educated guess.  Maybe I'm grasping at straws here.  Sorry!  Mom's nodule is 1.4 cm, from what I've read that's small.  It may indicate surgery could take care of it and she could continue to be monitored.  Unfortunately, her doctors are good doctors but not talkative about things like this.   Thanks again.  

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Hi, Joy.  Your mom is fortunate to have the VATS procedure; the recovery is much better.  I had the traditional lobectomy and that was tough.  Your mom's surgeon will have the tumor tested to determine if it is malignant.  If it is cancer, you should also ask the surgeon to have the sample tested for genetic biomarkers.  If one is present, your mom may have the option of immunotherapy.

Let us know how we can support you and your mom. 

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Hi, Joy Marie,

My experience was similar to Bridget's--except my small nodule DID light up on the PET scan--it had an SUV max of 6.5.  Nothing ELSE lit up on the scan, which was reassuring.  In addition to the SUV, my nodule had a "spiculated" appearance, which is also suspicious for cancer.  My nodule, like Bridget's, was too small to biopsy, but my surgeon felt that even if a biopsy had been negative, it was suspicious enough that he would want to remove it.

The way it worked in my case was that the surgeon first removed the section of the lobe with the nodule, and had the nodule immediately examined in the lab.  He then removed the lobe and an assortment of lymph nodes.  The nodes all were clear of cancer, but the nodule was adenocarcinoma.  Due to possible invasion of the pleura (lining of the lung), it was Stage Ib.  I did not require any further treatment.  I was back at work in a couple of weeks and felt almost completely normal within a couple of months.  The lobectomy has had zero impact on my breathing or anything else.  I go for scans every six months to make sure everything stays fine.

If your mom's in good health, she should tolerate this just fine.  And good for her, for getting the scan!  Mine was recommended by my doctor due to my smoking history, and I'm sure glad she did!

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Yes, I'm so proud of mom for getting the early low dose CT.  She's holding up well and hopeful.  I'm worried, of course, but I don't let her know that.  Her VATS surgery is Sept 14th.  I will keep everyone posted.  Thanks to everyone who posted to me today.  Your support is everything.  Joy

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Hey, parents always secretly want their kids to worry about them, just not to go overboard, lol.  Your mom sounds like a strong lady.  If you live nearby, it's nice to have a little help for just the first few days at home.  Other tips include getting a foam wedge pillow to sleep on the first 2-3 weeks or so--there's a lot of coughing right after (which they want you to do--she will get breathing exercises and doing those help with recovery) and she will sleep better if her upper body is elevated just a bit.

If you really want to make her feel good, tell her how proud you are that she's taking such good care of herself.  :) 

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