EileenO

[EileenO]

Hello,

My name is Eileen and I am from Boston, MA. 

Yesterday I had a lung cancer CT (after putting it off for a year) and later in the day my PC doctor called to tell me that I have a nodule on my left lung that is 8mm and of great concern. I learned that nodules 3mm or less are likely noncancerous while 8mm or more are likely cancerous. My doctor also said that nodules 8mm or more are called masses instead of nodules, so I have a mass on my lung, not just a nodule. 🙁 I also had a bone density test and the results were very good. I am 69yo and an off and on smoker for about 40 years. Aside from a constant nagging cough, I am pretty healthy and do not take any medication regularly except for OTC medicine like vitamins, calcium and cold remedies when needed. 

I have an appointment with the pulmonary doctor on Tuesday of next week to go over the CT results and determine next steps. They wanted me to come in this week but I am not ready and first need time to absorb all of this. 

I am a single parent (husband died many years ago) with two grown sons and 4 grandsons that I love very much! I am struggling with how to tell my sons about this. My grandsons are 14, 12, 10 and 8 and will leave whether or not to tell them to their parents. My grandchildren recently lost both of their maternal grandparents and I am the only GP they have today, we are very close and this news could devastate them! All 4 grandkids are from my oldest son and daughter-in-law , my youngest son does not yet have any children, at least that we know of!

I have so many questions for this group and am looking for support from others facing the same situation. I may be jumping to conclusions here but honestly think that I do have lung cancer. How did others tell their loved ones about this and how much should they be involved before the diagnosis? Are there others that had a 8mm mass that turned out to be non cancerous and how many others were cancerous? What treatment have others received and how effective was it? I have read that those with a 8mm mass that was cancerous were given 5 years of life expectancy. Is this true? 

I am retired from a national non-profit where I was the Director of Community Outreach and Public Relations. While I have been in the public most of my adult life, I am a very private person and seldom share my private life with anyone outside my family. This situation scares the crap out of me and I need to share it with those that understand and can offer the support that I need. Anything you can offer will be greatly appreciated. 

Best Regards,

Eileen

[Donna G]

Hello Eileen.  I am 70 years old.  I was born and raised in Boston.  ( Roslindale)   

I am glad to hear you have an appointment with a pulmonologist to make plans I hope for a biopsy.  

If it turns out positive I pray they start treatment quickly.  This is possible to beat.  I have survived over 20 years.

Please keep us posted on how your journey is going..

Donna G

[BridgetO]

Hi Eileen and welcome here. 

There are lots of new treatments for lung cancer and more being approved by FDA all the time. There are also many clinical trials and some are helping people survive and even be cured. So any survival statistics are out of date, being based on people who didn't have all these new options. Additionally, statistics are based on bunches of people, and each of us is a case of 1. Your good general health will be a factor in your favor if it turns out you do have lung cancer.

Lung Cancer 101 on the main Lungevity website is a good place to begin looking for infomation about lung cancer and treatment. Here's the link if you don't have it: https://lungevity.org/for-patients-caregivers/lung-cancer-101. 

My situation is different from yours as I don't have any children or any close family other than my spouse. So I'm probably not the best person to advise on how/when to tell family. I think it depends in part on how close they are to you, both geographically and emotionally. If close, I suggest letting them know sooner rather than later. Will you be able to rely on them if you need help during medical tests or treatment. I don't like keeping secrets- I've been pretty upfront with people I'm close to and even some I'm not, who I see a lot. For children, if there's a big secret about an illness, they figure it out pretty quickly and it may seem scarier that it would be otherwise. If you're matter of fact when you tell people, I've found that they tend to be matter of fact about it too. After all, cancer is a disease. It can be treated. It's not a curse or a sentence.

So, having said all that, I admit that there are times I'm scared, anxious and/or depressed. I've found that antidepressants and support groups (including these online forums) can help. let us know what  questions you have and how we can support you. We are here for you! 

Bridget O

 

[Tom Galli]

Eileen,

Welcome here. In 2003, I was diagnosed with a single 7 cm long mass (70 mm) that was 2.5 cm in diameter that was completely blocking the airway to my right lung.  I suffered no symptoms, not even shortness of breath until my coughing started producing blood. I was diagnosed with stage IIIB non-small cell, squamous cell, lung cancer and endured a multitude of treatments until March 2007 when I achieved a state of no evidence of disease (NED).  

But, your mass is relatively small and there still is a great deal of uncertainty.  Here is my favorite go to reference for explaining lung nodules, what they are and why they form.  Certainly, your pulmonary physician will recommend, hopefully, a minimally invasive biopsy.  So, until the biopsy results are known, jumping to conclusions is an appropriate characterization.

I can't pretend to give you advice on how to involve your family.  I was a full disclosure guy and felt comfortable telling mine about my diagnosis.  They all pitched in and helped with my treatments. But, every family is different.

You mentioned the five year survival projection.  Here is some insight on medical statistics and why they are often inaccurate.  The most important reason is they are dated, with at least 1/5th the data 5 years old.  We've had a revolution in lung cancer treatment in the last 5 years and more people are living complete lives after successful treatment.

Read into the disease with the information Bridget provided.  Knowledge is power and you've got to get your vocabulary expanded to understand new terms and concepts.  I'd recommend you bring someone with you to the pulmonology consultation.  Moreover, as you read-in, if you have questions, this is the place.

Stay the course.

Tom

[EileenO]

6 hours ago, Donna G said:

Hello Eileen.  I am 70 years old.  I was born and raised in Boston.  ( Roslindale)   

I am glad to hear you have an appointment with a pulmonologist to make plans I hope for a biopsy.  

If it turns out positive I pray they start treatment quickly.  This is possible to beat.  I have survived over 20 years.

Please keep us posted on how your journey is going..

Donna G

Hi Donna,

Thanks for your post! I was born and raised in Dorchester and now live in Arlington.

I do know that this is possible to beat but I don't have 20 years. Not a Debbie Downer by any means, just trying to look at this realistically. 

I will keep you posted. 

Eileen

[EileenO]

5 hours ago, BridgetO said:

Hi Eileen and welcome here. 

There are lots of new treatments for lung cancer and more being approved by FDA all the time. There are also many clinical trials and some are helping people survive and even be cured. So any survival statistics are out of date, being based on people who didn't have all these new options. Additionally, statistics are based on bunches of people, and each of us is a case of 1. Your good general health will be a factor in your favor if it turns out you do have lung cancer.

Lung Cancer 101 on the main Lungevity website is a good place to begin looking for infomation about lung cancer and treatment. Here's the link if you don't have it: https://lungevity.org/for-patients-caregivers/lung-cancer-101. 

My situation is different from yours as I don't have any children or any close family other than my spouse. So I'm probably not the best person to advise on how/when to tell family. I think it depends in part on how close they are to you, both geographically and emotionally. If close, I suggest letting them know sooner rather than later. Will you be able to rely on them if you need help during medical tests or treatment. I don't like keeping secrets- I've been pretty upfront with people I'm close to and even some I'm not, who I see a lot. For children, if there's a big secret about an illness, they figure it out pretty quickly and it may seem scarier that it would be otherwise. If you're matter of fact when you tell people, I've found that they tend to be matter of fact about it too. After all, cancer is a disease. It can be treated. It's not a curse or a sentence.

So, having said all that, I admit that there are times I'm scared, anxious and/or depressed. I've found that antidepressants and support groups (including these online forums) can help. let us know what  questions you have and how we can support you. We are here for you! 

Bridget O

 

Hi Bridget,

Thank you for the welcome!

Your advice on family makes much sense to me and I hope to follow it. I am fortunate to be very close to my children and grandchildren both geographically (for the most part) and emotionally. Kind of why I am reluctant to share this with them. I can rely on them, and my two younger brothers, to help during tests and treatment. One of my biggest fears is that they will try to force me to live with them and that is not happening!!

I too don't like keeping secrets. You are so right about children figuring out pretty quickly when the secret is about illness. I do not want them to 'figure it out' on their own and need to think about that.

Although you don't have any children or any close family other than your spouse, you have given me advice as though you do. Thank you! 

Eileen

[EileenO]

4 hours ago, Tom Galli said:

Eileen,

Welcome here. In 2003, I was diagnosed with a single 7 cm long mass (70 mm) that was 2.5 cm in diameter that was completely blocking the airway to my right lung.  I suffered no symptoms, not even shortness of breath until my coughing started producing blood. I was diagnosed with stage IIIB non-small cell, squamous cell, lung cancer and endured a multitude of treatments until March 2007 when I achieved a state of no evidence of disease (NED).  

But, your mass is relatively small and there still is a great deal of uncertainty.  Here is my favorite go to reference for explaining lung nodules, what they are and why they form.  Certainly, your pulmonary physician will recommend, hopefully, a minimally invasive biopsy.  So, until the biopsy results are known, jumping to conclusions is an appropriate characterization.

I can't pretend to give you advice on how to involve your family.  I was a full disclosure guy and felt comfortable telling mine about my diagnosis.  They all pitched in and helped with my treatments. But, every family is different.

You mentioned the five year survival projection.  Here is some insight on medical statistics and why they are often inaccurate.  The most important reason is they are dated, with at least 1/5th the data 5 years old.  We've had a revolution in lung cancer treatment in the last 5 years and more people are living complete lives after successful treatment.

Read into the disease with the information Bridget provided.  Knowledge is power and you've got to get your vocabulary expanded to understand new terms and concepts.  I'd recommend you bring someone with you to the pulmonology consultation.  Moreover, as you read-in, if you have questions, this is the place.

Stay the course.

Tom

Hi Tom,

Thanks for the welcome!

Your story is encouraging and I look forward to NED. This is the first I have been told (or read) that my 8mm mass is relatively small, can you tell me more about this? I know that there is a great deal of uncertainty but I want to learn as much as I can.

I will take your advice to bring someone with me seriously. 

Eileen

[LexieCat]

Hi, Eileen!

An 8mm nodule is VERY small, and I don't know of any sources that would call it a "mass."  I think you MIGHT have been thinking cm, not mm.  Just a quick source found on google: http://www.radiologyassistant.nl/en/p460f9fcd50637/solitary-pulmonary-nodule-benign-versus-malignant.html.  It's the over 3 CM size that's referred to as a "mass."  Something your size could very well be benign.  Yours is less than a cm.  In my case, my almost-1cm nodule was suspicious not so much because of its size, but because of its appearance ("spiculated"--having points like a star).  I did have a lobectomy and that did turn out to be cancer, but I have a few other nodules nobody really seems that concerned about.  They will continue to watch them as I continue to go for twice a year scans.  My nodule/tumor (over 1 cm when removed) was such an early stage that the surgery likely cured it.  I did not have to have chemo or radiation--anything other than the surgery, which was a quick recovery.  

I'm not saying your situation COULDN'T be worse, but I'm suggesting it may not be nearly as bad as you fear.

As far as family goes, the only ones I didn't tell were my very elderly dad and stepmom.  I know my dad, and his memory was starting to fail.  If I'd told him, he would have worried about this quite literally for the rest of his life--because no matter how good the reports he would fixate on the cancer and I'd have to be constantly reassuring him.

Everyone else was very supportive and helpful.  I have two grown boys in their late 20s/early 30s, and I am still very close friends with my ex (their dad).  They all pitched in, and a cousin with whom I grew up even flew across the country to give me a hand for the week after I got out of the hospital.  

I know it's a shock to get this kind of news, but try to take it one step at a time and don't get ahead of yourself.  Find yourself some good docs who can guide you through this.  Boston is CRAWLING with cancer experts!

[Steff]

Eileen,

Here is a perspective from a daughter of a mom with lung cancer - we can handle it, you trained us to be able to handle whatever comes at us.  Yes, we are going to be sad, angry, feel hopeless and helpless (at times), but we can handle it. Let us be there for you, you were always there for us.  Let us comfort you because you have always comforted us. We will make it through this together.  Let me help when you need help. Tell me you are okay when you are okay, but also tell me when you are struggling.  Let me tell you that everything is going to be alright, because we will figure out a way to make it alright.

I am an only child. I am very close to my parents, especially my mom. She is my best friend, my rock. I would imagine if you are very close to your children, your children feel the same things that I mentioned above.  Now don't get me wrong, my mom's health struggles broke me. I am facing things that I wasn't ready to face. And even though dealing with the battle is emotionally exhausting and leaves its battle scars, I would not have it any other way (except for her to not have cancer). I am closer to my mom because of cancer (I didn't even think that was possible). 

I echo everyone else's message of taking someone with you to appointments.  There is so much information to be retained during appointments that it helps to have an extra set of ears.  

Finally, I hope that this will all be a mute point because your "mass" turns out to be non-cancerous, but if it does turn out to be cancerous, we are here for you. And I am happy to hear that you have family that you are close to.

Take Care, 

Steff

[Tom Galli]

Eileen,

Lexie's explanation on size is right on.  Here is another analogy.  If you have an old fashion lead pencil with an eraser, the diameter of the eraser is little smaller than 8mm.  I think it is a nodule and not a mass.  But the pulmonologist ought to be able to show you the size on the CT scan.  Ask him and he'll mount the film and measure it with a ruler.

I believe the point for your focus now should be it is an early find and these are often successfully treated.  So regardless of the biopsy outcome (if it can be biopsied) you should be just fine.

Stay the course.

Tom

[Laurel]

My only child, a daughter, is living in Brazil with her husband and two young sons, age 1 and 3. The same week I was told I had cancer, my husband had a massive heart attack. There was no hiding the news. Plus, a few years ago, my daughter made me promise she would always be told about our health. Share with your children and friends. Support is so good to have.

[EileenO]

On 5/10/2018 at 8:46 AM, LexieCat said:

Hi, Eileen!

An 8mm nodule is VERY small, and I don't know of any sources that would call it a "mass."  I think you MIGHT have been thinking cm, not mm.  Just a quick source found on google: http://www.radiologyassistant.nl/en/p460f9fcd50637/solitary-pulmonary-nodule-benign-versus-malignant.html.  It's the over 3 CM size that's referred to as a "mass."  Something your size could very well be benign.  Yours is less than a cm.  In my case, my almost-1cm nodule was suspicious not so much because of its size, but because of its appearance ("spiculated"--having points like a star).  I did have a lobectomy and that did turn out to be cancer, but I have a few other nodules nobody really seems that concerned about.  They will continue to watch them as I continue to go for twice a year scans.  My nodule/tumor (over 1 cm when removed) was such an early stage that the surgery likely cured it.  I did not have to have chemo or radiation--anything other than the surgery, which was a quick recovery.  

I'm not saying your situation COULDN'T be worse, but I'm suggesting it may not be nearly as bad as you fear.

As far as family goes, the only ones I didn't tell were my very elderly dad and stepmom.  I know my dad, and his memory was starting to fail.  If I'd told him, he would have worried about this quite literally for the rest of his life--because no matter how good the reports he would fixate on the cancer and I'd have to be constantly reassuring him.

Everyone else was very supportive and helpful.  I have two grown boys in their late 20s/early 30s, and I am still very close friends with my ex (their dad).  They all pitched in, and a cousin with whom I grew up even flew across the country to give me a hand for the week after I got out of the hospital.  

I know it's a shock to get this kind of news, but try to take it one step at a time and don't get ahead of yourself.  Find yourself some good docs who can guide you through this.  Boston is CRAWLING with cancer experts!

Hi LexieCat,

You are correct, I meant to say 8cm not 8mm. So much easier when measurement units were inches instead of centimeters, picas, points, or millimeters. 

Glad to hear that your 1cm nodule was successfully removed and you did not need chemo or radiation! Hoping the same for myself 😊

I did tell my oldest son and he is coming with me on Tuesday for the appointment with the pulmonary doctor. I have sworn him to secrecy, other than my daughter-in-law (his wife). I will wait until after the appt on Tues to decide what to tell other family if necessary. Hard to not get ahead of myself but I am trying. 

My doctor is amazing and you are right, Boston is crawling with cancer experts and she knows all of them.

Best 

[EileenO]

On 5/10/2018 at 11:17 AM, Steff said:

Eileen,

Here is a perspective from a daughter of a mom with lung cancer - we can handle it, you trained us to be able to handle whatever comes at us.  Yes, we are going to be sad, angry, feel hopeless and helpless (at times), but we can handle it. Let us be there for you, you were always there for us.  Let us comfort you because you have always comforted us. We will make it through this together.  Let me help when you need help. Tell me you are okay when you are okay, but also tell me when you are struggling.  Let me tell you that everything is going to be alright, because we will figure out a way to make it alright.

I am an only child. I am very close to my parents, especially my mom. She is my best friend, my rock. I would imagine if you are very close to your children, your children feel the same things that I mentioned above.  Now don't get me wrong, my mom's health struggles broke me. I am facing things that I wasn't ready to face. And even though dealing with the battle is emotionally exhausting and leaves its battle scars, I would not have it any other way (except for her to not have cancer). I am closer to my mom because of cancer (I didn't even think that was possible). 

I echo everyone else's message of taking someone with you to appointments.  There is so much information to be retained during appointments that it helps to have an extra set of ears.  

Finally, I hope that this will all be a mute point because your "mass" turns out to be non-cancerous, but if it does turn out to be cancerous, we are here for you. And I am happy to hear that you have family that you are close to.

Take Care, 

Steff

Steff,

Thank you so much for your post and sharing your story with me! Your words touched me deeply, particularly from a daughter with a mom that has cancer, and are encouraging. Your mom must be so proud of you.  

I heard everything you are said and will take your advice to let my children be there for me. I did tell my oldest son and he is coming with me to the appt on Tues with the pulmonary dr.  

My biggest fear for my children is that, like you felt, my health struggle will break them. I hope for them to be as strong as you are and face whatever comes next head on!

[LexieCat]

Oh, sorry to hear it's 8 cm and not mm.  Assuming it does turn out to be cancer, chances are it won't be staged lower than Stage III, so it's likely you will be looking at some additional treatment beyond surgery.  That's pretty much the protocol for anything more advanced than Stage I, and an 8 cm tumor would be too large for Stage I.  Still, there are a lot of treatments available, and more coming along all the time.  It's always better news to have a lower stage, but we have a lot of people doing well here over the long term even with very advanced cancers.  Everyone responds to treatment differently.  

I think you will feel better as you get more information about your particular situation and a treatment plan in place.  Having a game plan will allow you to gear up for this thing, mentally and physically.  

And I think you're being very wise to involve your kids and let them pitch in to help you.  Yes, they will  worry--family members do that.  But, just as I said you will feel better with a treatment plan in place, they will feel better doing what they can to help and support you.  It's different when there are family members who are especially fragile (like my dad), or when there are very complicated family dynamics, but I think most families are able to deal with stuff like this.  

Keep us posted--whatever comes along, there is probably one or more others here who have dealt with similar issues or treatments.

[EileenO]

Hello everyone!

UPDATE:

I took everyone's advice (thank you all so much!) and talked to my oldest son. He accompanied me to my first pulmonary doctor appointment today and it was overall good news! First, I once again had the measurement of my nodule wrong!!! It actually IS 8 mm NOT cm. This was a huge relief for both me and my son! Sorry for confusing everyone, including myself, this is more scary than I thought and I need to pay closer attention. 

She told me the 8 mm nodule had the 'star' characteristics that are of concern, therefore the next step is a PT Scan which I will have next Monday. She did notice three other nodules, two are <2 mm and just need to be watched. One is a little over 5 mm but does not have the 'star' characteristics. Given her expertise, she suspects the 8 mm nodule will light up in the PET Scan indicating that it is active but hopes to be surprised, she does not expect any other area to light up. If nothing lights up it is over and only regular follow up is needed to watch for growth. Praying for the latter.

If the 8 mm nodule does light up, the next step will be biopsy. If the biopsy is positive for active cancer cells she is confident, given the size, that it can be successfully removed, resulting in a cure and ending all further treatment. If the biopsy is negative for active cancer cells, it will also be removed to prevent further risks. 

Both my son and I asked a lot of questions and the pulmonary doctor answered ever one of them. In the end we agreed that while concerning, we will take this one step at a time and continue asking questions. She told us that she and her staff are a team (everyone came to meet me and give me their cards) and are with me every step of the way. I can't tell you how much this helped to alleviate my stress. I feel less alone, as I do here.

Best, Eileen

[LexieCat]

Oh, that's so great to hear!  8 mm is a VERY early "catch," so if it is cancer, chances are good that the surgery will be all you need.  Lung cancer is tricky, though, so you can expect twice a year (at least) scans for the next several years to be sure everything stays good.  I never had a biopsy--my pulmonologist said it was suspicious enough that regardless of the biopsy he'd recommend the surgery.  And it was a big relief for me, too, when the PET/CT scan had only the one suspicious nodule light up.

I still have a couple of small nodules that have been there since the beginning, and they watch them but don't seem especially concerned about them.  I've also had a couple that have appeared and disappeared on scans.  Small nodules can be anything--most of them are not cancerous.

I had my upper left lobe removed last year and the surgery was very simple.  I was out of work a total of three weeks, and would have been back even sooner but for a minor complication that put me back in the hospital for another chest tube for a few days.  My surgery was done using VATS (video-assisted thoracic surgery), which is laparoscopic--I had three tiny incisions and that was it.

One thing--if the PET/CT is negative, I think I'd want a biopsy or surgery anyway.  Or if not, I'd want another scan in about three months or so to make sure it isn't growing--the scans and biopsy aren't foolproof, and given the suspicious appearance, you want to make sure you stay on top of it one way or another.

I'm really happy to hear this is so much smaller than you thought!

[BridgetO]

Hi Eileen-- I'm glad to hear it was mm and not cm! Sounds like your appointment went great and your son was a real support.I agree with LexiCat  about having a biopsy or surgery anyway, regardless of PET results, or at least having another scan in 3 months. Here's how mine went: my very small single nodule was discovered in a CT for something else. They thought it was suspicious so rescanned in 3 months and it had grown very slightly. I did not light up at all on the PET scan. The pulmonologist told me that small, slow growing cancers often don't. A team of doctors determined that due to it's location, the nodule couldn't be biopsied without taking it (and my lobe) out. All of them agreed that it looked very suspicious due to it's shape. I had the surgery, by VATS, as was Lexie Cats. I came through it well-- it wasn't as hard as I'd expected. The nodule turned out to be adenocarcinoma, stage 1a. I didn't need any further treatment, but will have scans every 6 months for 5 years. I'm due for my 3rd one this month and so far, so good.

Keep us up to date with what's happening with you and let us know if you have questions and how we can support you.                                                                                                                                 

Bridget O

[EileenO]

Hi,

I had the PET scan this past Tuesday morning and my doctor, while at a conference, called me in the afternoon with the results. LOVE my doctor! My nodule had a 'mild uptake' indicating early slow growth. There were no other uptakes anywhere else. Such good news! 

Recommended next step is biopsy to determine if there are active cancer cells. If the biopsy results show active cancer cells the next step will be surgery. If the results don't show active cancer cells the next step will be regular monitoring. Hoping for the latter!  

What a journey this has been! Thanks for your support 🙂

EileenO

[Tom Galli]

Eileen,

I'd say your PET scan is a cause for celebration!  Mild uptake and a small nodule could be anything at all.  A biopsy could yield certainty but 8 mm is a very small target.  Let's hope the interventional radiologist has a sharp aim!

Stay the course.

Tom

[EileenO]

2 minutes ago, Tom Galli said:

Eileen,

I'd say your PET scan is a cause for celebration!  Mild uptake and a small nodule could be anything at all.  A biopsy could yield certainty but 8 mm is a very small target.  Let's hope the interventional radiologist has a sharp aim!

Stay the course.

Tom

My thoughts exactly Tom!

Staying the course, Eileen

[LexieCat]

Great news!  I hope the biopsy is negative, but if it's positive you've caught it early and any surgery should be uncomplicated with a quick recovery.  And I'm glad they are planning to keep an eye on it going forward if it's negative.  

Enjoy the weekend!

[EileenO]

On 5/25/2018 at 6:35 AM, LexieCat said:

Great news!  I hope the biopsy is negative, but if it's positive you've caught it early and any surgery should be uncomplicated with a quick recovery.  And I'm glad they are planning to keep an eye on it going forward if it's negative.  

Enjoy the weekend!

Thank you LexieCat!