So frightened

[Lisa L]

Hi I’m 52 and have been an on off smoker for many years.  My friend suggested her and I go get a lung and heart scan at Advanced Body Scan, which we did last Thursday ..well the next day my beloved mother passed away in her sleep and I have been devastated.  I just bury my mother and I get a call that I should be getting my letter and if I have any questions to call them, I thought that was weird and I get the letter yesterday, it says Spiculated lingular nodule 9mm with irregular margins in lingula ( suspicious, 15% chance of malignancy).  Of course I can’t call them because it is Saturday but I am having one panic attack after another and what I have read spiculated is not good. 

[LexieCat]

Hi, LIsa, and welcome.

You're right--spiculated is not good in the lung nodule department.  The GOOD news is that if it is confirmed to be (or highly suspicious for) cancer, it appears to be a VERY early "catch" and there's a good chance that a relatively simple surgical procedure will completely eliminate the cancer.  It's what I, and many others have undergone, and even 85 y/o Justice Ruth Bader Ginsburg came through it yesterday with the expectation that she will make a full, cancer-free recovery with no further treatment.

So try your best not to freak out.  Nobody wants to have to deal with lung cancer in any way, shape, or form, but you can be thankful that it was found so early.  What makes lung cancer such a deadly disease is that it's usually not found until there are symptoms and it is far advanced.  Mine was also found through screening, and I'm SO thankful my doctor suggested it.  

I'm sorry for the loss of your mom.  

Honestly, though, at this point there's no reason to think this isn't curable.

[LexieCat]

Incidentally, you can probably expect one or more additional tests: biopsy (if it's large enough and in a position where it can be biopsied), PET scan (to confirm there has been no spread), or it's possible they will suggest waiting three months or so and doing a re-scan to see if there has been any change.  That is common (to wait and see for a few months) and isn't likely to increase the risk to you.

[Lisa L]

Thank you for reaching out it does make me feel a little better.  So is 9mm considered small? And   Do you think it was caught early? Can you tell me about what happened in your situation. 

[BridgetO]

Hi Lisa and welcome, I'm sorry for the loss of your mother. 9 mm is a small tumor and LexieCat is right that spiculated is not good. However, because it's small, it's likely to be early. My nodule, which was about that same size, was caught in a routine scan for something else,  Mine couldn't be biopsied without surgery due to it's location . I had my right lower lobe removed by VATS (video assisted thoracic surgery) and had a fairly fast recovery with no further treatment required.

For good information about lung cancer, a good place to start is this https://lungevity.org/for-patients-caregivers/lung-cancer-101. Hang in there,  You'll need to see a pulmonologist soon. You might want to call your primary care doc for a referral. The pulmonologist will be able  to figure out what's next- undoubtedly more testing. 

Keep us posted and let us know what questions you have and how we can support you. We've been there!

[ColleenRae]

Hello Lisa ~ Glad you found this site. It has been a very valuable resource for me and others. You received good info from LexieCat.

I was an off/on smoker for close to 30 years and had a lung cat scan at the recommendation of a new Primary Care Provider in December 2016. I got the results three days before Christmas - I was told I had multiple lung nodules.  I, too, was devastated and extremely frightened, so I can understand how you are feeling at this moment.  I'm sure it's a very difficult time for you - I a sorry you just lost your mother as well. I don't have any answers as to why life's challenges and painful events can hit us like an avalanche at times...

This will probably be a difficult time for you until you can get more answers and, like LexieCat said, there will be more tests and possibly procedures that you will need to go through. Just try to be patient.  The nodules found on my scan in 2016 were small and they did not appear to be cancer at that time. So, I was told I should get regular scans and it would be a "watch and wait" situation. I continued to get scans every six months. The last scan I had was a bit earlier than planned (last July 2018). There was one nodule that continued to look suspicious. It had not grown in almost two years but it was becoming more dense.  I was told it was located in a difficult place to biopsy and that the best course of action would be to remove it via a lobectomy.  I was not happy to do this, but finally accepted this was the best option for me to undertake. I had a PET Scan prior to surgery that indicated there wasn't any cancer showing elsewhere in my body, however, the nodule in question did "light up" quite a bit, indicating it had a good chance of being malignant.  That further convinced me I would need to have a lobectomy done.

I ended up having the right upper lobe of my lung removed this last October.  I was very frightened. Overall, the surgery went well and it was a blessing that I had it done.  I had VATS surgery and a mediastinoscopy done to see if there was any lymph node involvement.  The tumor was small (8 mm) and the pathology test confirmed that it was adenocarcinoma. Fortunately there was no lymph node involvement and the PET Scan did not show cancer anywhere else so my cancer was staged 1a.  I was told I would not require any chemo or radiation after surgery.  I will be getting regular CT scans as my follow-up treatment.  My first post-surgical scan will be in February 2019 (and yes, I am nervous about it... but accepting that this is my new way of life!)

I'm sharing my story with you as wanted to know what a 9mm nodule might mean for you... It is considered small. If your situation is anything like LexieCat's or mine then it is a very good and positive thing that you got your scan done. If this nodule is cancer (and a lot of them aren't, so try not to get too upset as it might not be malignant) it is small and you're in a very good position to have caught it early. Like LexieCat said - even Supreme Court Justice Ruth Bader Ginsburg just underwent this in her 80's (and she's had two other cancers in the past). Amazing what can be done!

I'll be honest - I am still in shock over my own discovery of lung nodules two years ago... and that I've had a lobectomy and now can say / have to say that I am a lung cancer survivor.  I am grateful that the tumor could be removed, that it was small, etc.  Hopefully your nodule won't be cancer, but if it is, catching it at 9mm is a very positive beginning.  Please keep coming back to this site... There are some wonderful posters here that are extremely knowledgeable, encouraging and will help you through this.  I have many people I consider my angels or heroes on this site - for their experiences, positive outlooks and the generosity of their time to help others here.  I'm still struggling with this whole cancer experience, but they give me hope. Rely on this site when you need it!

I understand your fear but know that many others are on this same path as you (or have been there). It sounds like you've caught this early which makes a huge difference if this is lung cancer. 

Blessings to you...

Colleen

[Lisa L]

Oh Colleen thank you so much for your post ...reading it has helped me so much to  understand  this shocking situation..I spoke with the surgeon at the Advanced Imaging today and yes he called me on a Saturday because I was so upset and he said he sees a lot of modules that are not cancerous..even the one like mine and the good news mine has an 85 % chance it is not cancer ..but and he said but if it is it is small and your screening probably saived your life. But right now with everything I just want it to go away..the only thing that gets me through a posts like your’s Bridgette and Lexi ..

[Curt]

Lisa I’m having a similar experience to you.  A nodule was picked up on a scan for something else.  It is 8mm.   I had a PET scan six months ago which did not “light up”.  Cancer is supposed to light up on a scan because cancer cells are metabolically more active then regular cells.  Apparently they can still be cancer even if they don’t light up.   The doctor recommended we wait and monitor it.  I had a six month follow up CT recently. There was no change in the size but the doctor didn’t like the fact that it was spiculated and pulling on a fissure (the line that separates the different lobes of your lungs). They are unable to biopsy it.  They are recommending I have a lobectomy to remove it. I do have a family history of lung cancer.  I am gong for a second opinion on Monday.  I completely understand how frightened you are.  If you had an 85% chance of anything good happening in life you’d probably be be thrilled, somehow when it comes to cancer an 85% chance you don’t have it is nowhere near enough to allow you not to worry.  Do the best you can to focus on the fact that there is an 85% chance you are fine.  A spiculated nodule does increase the chances it is cancer but they took that into consideration when they sent you that report saying there was only a 15% chance it is cancer.  The good news is whatever’s it is it is really small.  The frustrating part is accurately diagnosing something that small is often times very challenging and can take a while.  That process is stressful.  I have found that communicating on this forum helps.  There are a lot of wonderful people who are having or have had the same experiences you are.  You aren’t alone.

[LexieCat]

In my case, the nodule had grown slightly from the scan I had the previous year (they had me come back three months after the first scan and with no changes they had me come back in a year--I was in a screening program with annual scans), and had developed a spiculated appearance.  Though the nodule was too small to biopsy, the consensus was that mine was suspicious enough they would want it out even with a negative biopsy.

So I had one lobe of my left lung removed, the nodule did turn out to be cancer (adenocarcinoma Stage Ib), and I had the option of chemo or no chemo.  I opted for no chemo and get semiannual scans for right now.  I just had my most recent one (1.5 years after surgery) and everything's still fine.  I FEEL fine.  No shortness of breath or other problems.  Assuming the next scan continues to be good, the scans will then drop back to once a year.

With a nodule the size of yours, there's a good chance that even if it is cancer (or sufficiently suspicious that surgery is recommended anyway), you will have a similar course of treatment.  Early detection and treatment is a game-changer with this disease.

[Lisa L]

Curt, 

Thank you for sharing ..so when they picked up the 8mm nodule was it spiculated? Did you immediately have a PET scan, I just got this news yesterday and haven’t been able to contact my physician yet and so I have no answers except for talking to people on this forum which has been helpful. My dad died of lung cancer 12 yrs ago but he was a heavy smoker..and I have also been a smoker for many years on and off depending on my stress level..I’m 52 going through a divorce and just lost my mother last week ..it’s like what else can I deal with.  Seems like the only comfort I am getting at the moment is talking to people on this forum, so thank you.

Lisa 

[Curt]

Hi Lisa.  I’m really sorry to hear about your mom and your dad.  Losing my dad to lung cancer six years ago left me feeling very alone.  It’s a strange feeling to not have that person around anymore.  I had to keep telling myself that if all things are as they should be in the world we will all have to go through the loss of our parents.  It doesn’t make it any easier but it’s one of those things we all will inevedely have to confront.  Your family history will weigh on how the doctors guide you.  Your having previously smoked will as well.  Don’t beat yourself up about that one. I’ve never smoked and am going through the same thing.  The search for answers is difficult with lung nodules.  The only definitive way for them to know what they are is to biopsy them.  The doctors will determine if that is necessary based on your specific demographics, family history, the characteristics of the nodule and the results of the PET scan.  Mine was spiculated when it was originally found.  Spiculated does increase the concern, but it does not definitively mean cancer.  It took me a while to make my way through the intitial obdominal CT scan that saw it, following up with my primary, getting a CAT scan specially looking at my lungs, then following up with a surgeon who specializes in cancer.  That surgeon ordered the PET scan.  My insurance company didn’t want to approve the PET scan at first because it wasn’t 10mm. The doctors were able to convince them it was necessary.  That scan did not show anything difinitive.  Nothing was “glowing”.  It was probably two months from the time of the original scan until I had that PET scan.  The doctor who ordered the original CT of my abdomin never mentioned the nodule in my lung to me.  My mother, who is a nurse (and thankfully nosy), read my entire radiology report.  She found mention of the nodule on the third page.  Frankly if she hadn’t read it I would have never seen it.  Even if I did read the entire report I wouldn’t have known to be concerned and to follow up   I just had my six month follow up CT. Nothing has changed but the fact that it is spiculated and pulling on the fissure that separates two lobes concerns the doctor.  That coupled with the location (upper right lobe), my family history and spiculation has been enough for them to recommend I have a lobectomy without knowing for sure it is cancer.  I understand from others on this forum that is not an out of the ordinary approach.  I also understand that it is a very affective treatment and, after lots of research and consultation, not the life altering thing I initially thought it would be.  I am getting a second opinion tomorrow.

Who knows why life seems to throw challenges at us all at once.  That is to a large extent out of your control.  Try to stay focused on what you know.  You have a small spot, the odds are it’s not cancer but you should be diligent in following up on it.  Try to find compfort in the fact that it is small and able to be dealt with regardless of what it is.  Don’t let the other things happening in your life (divorce) turn your attention away from this   Keeping after this is more important.

Use this forum for support.  You will find people here with many of the same life experiences you have had or are having.  I’m sure your current circumstances feel overwhelming but take comfort in knowing others here have confronted the same things you are, they have been able to overcome them and are more than willing to support you as you go through them.   

 

 

 

[Lisa L]

So I went to physician today and she scheduled a pet scan ..I told her I was terrified and she game me some anxiety meds buspar  for 30 days.  I also got a call from the Pet Imaging from Tulsa and they have me scheduled for Thursday at 9am..I seriously almost cried to her and asked her so many questions..she did say it was small, she said usually on ct scan they say something abt lymph nodes which mine didn’t ..she said it’s not attached to wall and maybe like the middle lobe?  Is any of that good? She said take it one day at a time which I am trying to do..but I have such an active life and this has stopped me in my tracks and I just keep thinking abt my life has stopped ..on a completely other note every time I sign into this sight it will not take my password..and I have not changed it but I keep having to say forgot my password and get a new password every time I sign in which is annoying...thanks guys 

[Tom Galli]

Lisa,

I messaged tech support about your password difficulty and hopefully they will soon contact you and solve the problem.

Hopefully the PET scan can add some clarity to your diagnosis.  I think it is good news the CT was silent on lymph nodes.  I’m not sure what your statement “attached to the wall” means, but that brings up a good point. It is good practice to ask your doctor for all copies of scan results. That allows you to read the results yourself later or post specific questions about your report here.  I maintain copies of all my scans and it helps me keep track of “phantom” (here today, gone tomorrow) lung nodules that keep showing up or not on my scans. While we are not doctors, many of us have had many scans and we’ve picked up a lot of vocabulary. 

Try now to focus on Christmas.  The celebration for me always brings me peace.  Put cancer on hold for the rest of today, surround yourself with family and friends, perhaps go to church, and enjoy the holiday. Watch a Christmas theme movie.  I’m a sucker for White Christmas with Bing Crosby and Danny Kay and will watch it tonight.  

Thursday will come in due time and we’ll know more a couple of days after your PET.  

Merry Christmas and stay the course,

Tom

[Roz]

Lisa,

I totally understand how frightened you feel. Thursday is around the corner. After that,  you will find yourself waiting again for results.

As hard as it might be, the more time you can spend doing things you really enjoy and trying to turn off the "thinking," will be helpful. I'm not saying that it's easy to do.

I have an app on my iphone called "insight timer." It's a free app..and it has options for relaxation, anxiety, breathing, sleeping..etc. Sometimes, it can really help, even if it's just for a short time. 

 

I'll be thinking of you on Thursday!

 

Ro

[Lisa L]

Tom thank you that fixed the problem.  Curt how did your second opinion go? Thanks Roz I will check out the app today...trying to keep all the negativity out of my head. 

[Rower Michelle]

Hey there.  I know it must be hard to get through this & everything except 7-11 is closed today.  

Try some of this medicinal meditation music:

www.soundstrue.com/free  

Michelle

[Lisa L]

Hi Curt, 

Just  wondering how your second opinion turned out? 🙏

[ROAD3000]

Hi Liza,

I know your scared, been there done that, horrible thoughts go through your head, and you feel alone shocked who I do I tell where do I go.

The hard part is waiting for the answers, for sure.

If that single 9mm nodule comes back positive you were blessed that you had the scan.

You will have lots of options and lots of support here.

Your next step if your 9mm depending on its location will be a biopsy, mine was pretty painless, then if that comes back positive than a pet scan to check for friends.

Hang in there

 

Jerry   

[Curt]

My second opinion went well. Thank you for asking.  They gave me the option to just watch it for another six months or to biopsy it.  If it turns out to be cancer during the biopsy they will do the lobectomy at that time.  I’m still not sure why the other doctor wanted to do the lobectomy without a biopsy.  I’m going to call them tomorrow.  I went to Sloan Kettering for the second option and felt much more comfortable with them.  I’m opting for the biopsy.  I want to find out what this is and figure out what’s next.  It still scares the crap out of me that I’m going to be going to sleep and could be waking up with part of my lung missing and a cancer diagnosis.  It scares me even more to have it inside me and not know what it is.     

The PET scan will likely give you some more information but be prepared that it may not be difinitive.  Mine wasn’t.  They had me do a six month follow up CT after my PET.  I know it’s hard but make a conscious effort to try and keep to your life routines.  Worrying doesn’t make this go quicker.  I have a few work and personal trips coming up.  If I did the biopsy and it turns out to be cancer ad they did the lobectomy I would not be able to go on them.  You aren’t supposed to fly for 6-8 weeks after a lobectomy.  Given it hasn’t grown in six months the doctors weren’t overly concerned so I am scheduling it for after the trips.  They felt confident that even if it is cancer waiting six weeks won’t make a difference in prognosis or treatment.  I just need to figure out how not to worry about it during that time.  

Good luck on your test tomorrow.  Think positive thoughts...and bring something to read.  They inject you with radioactive material.  When they did mine they made me sit in a lead lined room for an hour to let the material be absorbed.   The room I was in had no cell signal (lead lined), and really old magazines.  It was a long hour.  It will probably be about a week before you get the results.  

Coincidentally I’ve been having the same log in issues as you.  What were they able to do to fix it?   

[LexieCat]

Lisa, what helped me the most was to assume, until proven otherwise, that whatever came my way would be something I could deal with.  Look, none of us here on this site is a superman/woman.  We are ordinary people, like you, who got a health issue thrown at us that we hadn't planned on.  For a lot of us, the diagnosis didn't have to throw life that out of whack.  For the others, they have found ways to incorporate the necessary treatment into their lives.  Even with radiation, chemo, and other treatments, not everyone has side effects that are bad.  And for those who do have effects on the rougher end of the spectrum, there are strategies to lessen the impact.

Any time you think about statistics, it can be helpful to realize that there's no reason not to believe you'll be on the "good outcome" end of the spectrum.  Being young and in fairly good health otherwise is always a plus.  

Bottom line is that right now, there's no reason not to assume your worst-case scenario won't be a relatively simple surgery that will eliminate the cancer (if that's what it is) entirely.  Try focusing on that likelihood.  

[Lisa L]

Guys thank you so much, when I read your messages I start to feel calm and then it starts all over again so keep them coming.  The pet imaging center had called me because they are waiting for my insurance to approve 50% of the scan.  I had only switched to this new insurance back in September trying to cut some costs and now it might bite me also my physician of 10 years had retired and I had not got a new dr. Until I was out of my lisonopril and then made an appt. with her, it was going to be 2 months so I saw her PA, no biggie.  When I got the results of the scan it was Christmas Eve that I called the office and the physician was out but I saw the PA again, she honestly looked at me like she was terrified for me but did issue the Pet Scan for tomorrow and fast forward now Monday.  I also called the dr office for them to refer me to a pulmonologist which I have not received a call back from, bottom line I haven’t even seen my regular physician yet and won’t u til she is available at the end of February so I am taking my health into my own hands and no matter the Pet I will get a pulmonologist on my own I just hope that having to wait doesn’t change things with the size of the nodule.  We do have a Cancer Treatment Centers of America her in Tulsa, which I guess is good.  Again guys thanks for the support!

[LexieCat]

Your primary physician should definitely be in the loop, but she will be of limited usefulness in dealing with lung cancer--it's just too specialized a field.  I make sure all my test results get sent to my primary so she knows everything that's going on, but everything cancer-related for me has been with pulmonologist (the experts in assessing/following nodules) and then my surgeon and my oncologist for followup.

I don't think most of us with early-stage cancers necessarily need the HIGHEST level of expertise (what you would get at MD Anderson or Sloan-Kettering or someplace like that).  One advantage of going to a place that specializes in cancer treatment, though, is that they often offer a multidisciplinary approach that has pulmonologists, surgeons, oncologists (medical, surgical, and/or radiation) all in one place.  It helps keep everyone on the same page and minimizes the need to schlep your records and test results around.  Some local hospitals, even if they aren't "cancer centers" are still big enough that they offer similar kinds of team approaches.  Of course, if it ever turns out that someone has a particularly unusual or aggressive cancer, higher levels of expertise might be called for.  In my case, I had early-stage adenocarcinoma, which is probably one of the more well-understood lung cancers with many available treatments.  I never had molecular/genetic testing of my tumor tissue (though samples are in storage in case it's ever needed).  My oncologist did not feel it was necessary unless/until there was a recurrence, in which case they would test it.

[Rower Michelle]

Hi Lisa, 

You may also want to check out the NCI link: 

https://www.cancer.gov/research/nci-role/cancer-centers/find  

Michelle

 

[Lisa L]

Curt, I just used my user name instead of my email and then it took my password.  So hard to stay focused today, I just come into my office and do the bare necessities to keep everything flowing and then I leave.  I am of course feeling every pain in my body thinking oh great it’s the nodule, I have always been a worrier by nature so this has put it in overdrive.  Everybody has posted such encouragement and I just need to chill out.  On the flip side I actually went in for a heart scan and my calcium score was 0 so that’s good.  Thanks again

Lisa

[BridgetO]

Of course you think every pain or even unsual feeling in your body is "THE NODULE" . We all do that, at least at times. Even if your nodule is malignant, it's unlikely to be causing any pain. One reason lung cancer is so difficult is that the vast majority of lung cancers have no symptoms until they're advance, which usually means large. Your nodule is a little bitty thing (like mine was). If cancer, you're fortuate to have it found early when it's most likely to be curable (like mine was). Any cancer is scary. Any possiblity of cancer is scary. I know this, because i've been through 3 of them, all unrelated (breast, cervical/endometrial, and lung). And I'm here to tell about it! Hang in there, you can do this!