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New here. terrified of the unknown.

srndpty4life
Posts: 7
Joined: Jan 2019

I am going for CT scan #2 of my right lung. A 9mm "spot" was found in the right upper lobe and is being checked again tmrw. Recent COPD diagnosis, and the fear of not being able to breath has got me quite worried. Anyone out there just starting this journey? 

srndpty4life
Posts: 7
Joined: Jan 2019

I had my second scan done yesterday of this "spot" on my lung. I now know that this is called a nodule only because the tech referred to it as that. The wait contines, so in the meantime, I have called the Doc and asked for a Pulmonary referral. I know it's early in this diagnosis, but I feel like I am getting most of my info on this site. Still waiting on the call to see where things go from here.. The waiting is the worst!!Cry 

 

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jorola
Posts: 225
Joined: Mar 2016

Nodules can be fairly comman. They can be caused by scarring from infections, diseases and even arthritis. It can only be confirmed as cancerous through a biopsy not a CT scan. Scans are often done to monitor for growth. Not that is a tell all for possible cancer either but often does prompt a biopsy - if it is big enough. A referral to a pulmonary specialist will get their opinion and if a biopsy is warranted. May your nodule not be cancerous and you continue on without cancer in your life.

srndpty4life
Posts: 7
Joined: Jan 2019

I want to thank you for responding to my posts, I'm not sure where to begin. I saw your profile on here and your responses to others going through their cancer journey, including your husband. I actually started to reach out to you, I even began typing to you some of my questions, worries, and fears. I never sent it on as I'm not sure what is going on yet. I just want to say, what a nice surprise to get a reply from you! Thank you for sharing your knowledge and explaining these things to me, you seem to know quite about this and I can see why. I hope your husband is doing well, and you too! 

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jorola
Posts: 225
Joined: Mar 2016

You should always see your dr and listen to their expert advise as I am no dr of course. I am only relaying yes what i have learned in my 4 1/2 years of having to be aquainted with this beast. God forbid but I can be wrong. I just have known a number of people that scared themselves to death that they had cancer and in the end they did not thank goodness. Sometimes it is just not cancer and I truly hope for you this is the case. I get it is scarey. Even still knowing what I do, if I was in your position I am sure I would still be freaked out until I knew for sure! Hey we are human. The thing that worked for me to try to remain calm and not focus on "cancer" was to do things I loved the most - hobbies, being with best friends, watching fav movies. What better way to spend your time right? That was advise I got from someone on another cancer site when I first started this journey and she is a very dear friend now. I  give that same advice to whomever needs it. Waiting sucks, but keep busy as above and wait to see what comes of the results. All the best and please let me know how things turn out. Fingers crossed!

srndpty4life
Posts: 7
Joined: Jan 2019

Going to the Dr. for a follow up which will be a relief, things are moving along now and that seems to help. In the meantime, I have been staying away from digging too deep into anything until something is determined. The tech even told me the internet can be your enemy, imagine that!! So, I will take your advice and put this in the back of miy mind, and start focusing on the good things in my life. Spring is right around the corner, and I have alot to look forward to! Thanks again for your support and kind words. I will be back on here again once I see the Doc. 

LOWE2019
Posts: 6
Joined: Feb 2019

I went for a random ct scan Dec. 13, I wanted to see if I had any calcium on heart, no calcium but to my surpise a 9mm spiculated nodule in lingual.  Terrified is an understatement even tho I smoked on and off for 20 years, 3 weeks later went for a PET scan that showed no uptake anywhere, not even the nodule, not even a little, so If it were to glow anywhere they would have got me right into a pulminologist but because it did not I see him Feb. 13.  I have been on every site possible and when it comes to nodules and spiculated it is not good, although I have talked to a few dr. who say spiculated does not always mean cancer.  The waiting is awful and I feel like my life just shut down, i am praying that it has not grown.

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jorola
Posts: 225
Joined: Mar 2016

Like I said above, heck ya this is scary. I completely get that. But the only thing you can do is take things step by step. Jumping ahead to a diagnosis of cancer is only going to drive you nuts. I can see it in your post. I know you are beating yourself up for smoking. You can't change your past. As much as we would all love to it is what it is. You can change your future though. Whether you have cancer or not, if you haven't quit, you can quit now. Yes it does make a difference even now. I encourage you to STOP googling. That is only feeding your anxiety right now. If you can't find calm, talk to your dr about something to help you while you wait for results. Also if it is cancer, 9mm is very small - like stage 1 or at most 2 which both are very cureable. My husband's tumor was 7 CM across - just across, not even sure how big ALL THE WAY around it was. He was stage 3b and after some tough chemo and radition he is now 4.5 yrd no evidence of disease (cancer free). PLease take heart LOWE. Take deep breaths. You are in good hands with your dr. Let us know how things turn out for you as well ok?

ElsaMay
Posts: 2
Joined: Jun 2018

Your words of advice have taken a weight of my shoulders - I too am waiting for test results.
I'd been having increasing trouble breathing so doc ordered xray. Xray showed pleural effusion on right lung. They drained two litres (!!) of fluid off on Thursday and I had CT scan on Friday (plus full bloods, ECG, etc, etc). ECG and bloods all fine. Fluid has been sent for testing and will see the doc this coming week for CT and fluid results. Have been beside myself with fear - I had breast cancer (stage 3 invasive) 10 years ago on my right side and doc said there's a chance this could be a reoccurance. Am absolutely terrified that it's come back and am expecting the worst even though I know that's irrational.
It's the waiting and not knowing that is the hardest - which I'm sure everyone on here knows.
Anyway I just wanted to say a huge THANK YOU - your post has provided me with some reassurance and sensible advice :) 

JudiCorbin2
Posts: 3
Joined: Feb 2019

I was glad to see your husband is over 4 years out from his diagnosis. My oncologist says after the biopsy n PET that I have SCLC limited stage n my radiation oncologist says it’s stage III B as the lymph nodes on that side were involved   I just started chemo n had my 1st cycle of 3.  I start radiation in a few days. I’m a retired RN so I had to not get to ahead of myself but it’s difficult as the survival percentage didn’t seem very good.   My mass is 2.2cm upper right lobe. The lymph nodes on that side caused a lot of pressure on the superior vena cava n it boarded on emergent but with steroids n first round of chemo the nodes shrunk enough to give me relief.  They ready jumped on treatments within a few days after biopsy was back    Any advice would be appreciated 

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jorola
Posts: 225
Joined: Mar 2016

especially with today's newer treatments. Stats are based on information (results of treatments) from 10 or more years ago. You know as an RN how quickly medicine treatments advance. So ignore the stats and just focus on you and your fight. Immunotherapy is started being used on small cell lung cancer now. This might be something you may want to discuss with your oncologist.

JudiCorbin2
Posts: 3
Joined: Feb 2019

thank you for your reply. You are right n again I was getting ahead of myself.  my oncologist does do immunotherapy for SCLC extensive stage But he says I’m limited stage even though there was one lymph node in the left cervical area which showed cancer on the PET otherwise it’s on on the right side of chest.  I believe they are thinking radiation will take care of that one.  

srndpty4life
Posts: 7
Joined: Jan 2019

Hello Lowe2019. I was wondering about your pet scan. I see where you had one done and now I wonder why they did not do the same for me. I feel like I have to stay on top of these Dr.s in order to get the care I am in need of. I asked for the referral from my family Dr. to the Pulmonary Dr. on my own. She had no plans of sending me on to the specialists. Any info you are willing to share would be appreciated. I hope you have learned mnore about your condition, and that your mind is at ease. Hang in there!

LOWE2019
Posts: 6
Joined: Feb 2019

Thank you for your response.  I quit smoking the day I found out about the nodule almost 2 months ago, cold turkey.  The doc did give me something for my anxiety, doesnt seem to be working lol.  I am so happy to hear that your husband is now 4.5 years cancer free, that is very encouraging. I wil get back on after dr. appt. next week with update.

srndpty4life
Posts: 7
Joined: Jan 2019

I had my second scan, and follow up with family doc. What a relief to find no new growth! That being said, I am in a much better place than I was a few wks ago. I do NOT have cancer!! Thank the Lord above! Being as I did have a recent COPD diagnosis, I am going to follow thru with a pulmonary dr. just for peace of mind. I would like to say to LOWE2019, I totally understand your fears, just as JOROLA said. Stop digging too deep into this as I did, it will just cause you great stress and worry, and that's not good for anyone. As the tech told me, "the internet can be your worst enemy", and she is right.Jorola, you are a God send to those of us with these scary scans! And to you Lowe2019, I wish you good results and peace of mind. 

LOWE2019
Posts: 6
Joined: Feb 2019

I saw the pulmonologist yesterday and he said the pet scan looked good but yet sometimes there is no uptake on small nodules.  He also pulled up the pet scan disc and looked and said I also have a 1mm nodule in same lung, he didnt seem to think that was anything (ofcourse I am freaked out), the main thing is though, he said the nodule looked very round and not spiculated, he also showed it to me and it didnt look spiculated at all, so he said to small to biopsy, doesnt think i need to get agressive and have the vats (yet) wants me to come back in April and see if the nodule has grown.  I was very encouraged by the no spiculation but then I looked it up and it says ct scans are better then pet scans...uggg why do I do this to myself.

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jorola
Posts: 225
Joined: Mar 2016

always remember take things step by steps and breathe. you will find your way. You are most kind with your words, thank you but I am just returning the favour once paid to me when I was once in your position. Seriosly no need to thank me. Just promise me to go live, laugh and most of all love.

srndpty4life
Posts: 7
Joined: Jan 2019

Saw a Pulmonology Dr. a week ago and found out I have severe copd. Now trying to find the right inhaler and learning how to live with having it. Other tests have been ordered, he has recommended scans of the nodules in my lung every yr. for 15 yrs. I also learned there are 2 smaller nodules in there but he dosen't seem concerned. I don't like the idea of no new scan for a yr. but he is the Dr. There is a strong history of this disease (lung cancer) in my family and I wonder if I should push him to scan in 6 mos. I was told not to let them put off a biopsy by a friend who has been through this. Return visit in a few weeks with many more questions and answers to be asked. Jorola, I have taken your advice and am taking it one day at a time, It sure has helped! I will be a first time Gma soon and have alot to live for and look forward to!

LOWE2019
Posts: 6
Joined: Feb 2019

I am surprised the pulm doc would wait a year to have a scan.  I go back in April and it will be my first scan since originally found, which will be a 3 month scan.  Did he ever have you take a pet scan, I mean that to me would be the next step to see if it lights up.  What does your nodule look like? Lobulated, spiculated, round? Mine is spiculated which is concerning, but 9mm is to small to biopsy, so really there is nothing i can do at this point, I could push for VATS but yet that option scares me also.  If it has grown on next scan even a little then I will have them do Vats and my Pulm Doc said he would be pretty sure since no uptake on PetScan it would be stage 1a which surgery is all you need, and then scans for years.  I am just praying that when we do a rescan its gotten smaller or just gone.  I am 52 and my Doc that I was still young (really), but I was also a smoker so there is that.

 

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jorola
Posts: 225
Joined: Mar 2016

A pulmonary specialist knows their thing. I am sure he looked at both scans. You can ask him when you follow up again but until then you are in no danger. 1 mm is extremely small. Even if it was cancer it would be stage 1 at this most with is totally curable. My hubby's tumor was 7 cms across, that's not even the total circumference. He was stage 3b and you know his story. Again breathe. You will be ok. Your doctor will figure this out and the best way to deal with it, if it even needs to be dealt with at all. There is no confirmation you even have cancer and I hope you don't and never do get that diagnosis. Stay away from the internet and go live. Talk with your dr at your next appt and got from there.

regi1010
Posts: 2
Joined: Feb 2019

Hello! You might be interested to read this -  https://symptomsinfo.com/lung-cancer-8-symptoms-of-mesothelioma/

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jorola
Posts: 225
Joined: Mar 2016

 

It is not, repeat not, from a reputable medical site like the Mayo Clinic or Dana Farber or even a known cancer site like CSN or Canadian Cancer Society.

 

It is from syptomsinfo.com - not even known who sponsors it. It even says at the bottom of their website " symptomsinfo.com – All content is strictly informational and should not be considered medical advice, diagnosis or treatment. See a certified medical professional for diagnosis and treatment recommendations."

 

Please be careful googling for your own safety. There is great info out there and there is not so great info out there. Always stick to reputable sites and most of all reconfirm the information you found out with your doctor to see if it applies to you!

 

CarolynL
Posts: 1
Joined: Mar 2019

My husband was diagnosed with NSCLC January of 2018. He had no symptoms at all until one Saturday evening when he took the dog out and came back in and bent over to wipe his paws and couldn't catch his breath.  Made a quick trip to our local emergency room and was told would have to be taken via ambulance to a larger hospital in a town about 40 miles away. A mass the size of a softball was in his upper right lung.  Admitted to hospital about 1am on a Sunday biopsy on Monday, pulmonary doctor on Tuesday, sent to Oncologist and started chemo on Thursday.  Long story short he had NEVER been sick in our 38 years of marriage so every treatment they gave him he had an adverse reaction to. I think he has been in the hospital for something every other month.  Was told tumor would most likely never be operable, but after two month of chemo, a new PET Scan was done and we had a doctor at Barnes in St. Louis, say he could operate.  After the operation we were told that they took the upper 3rd of his right lung and 5 out of the 9 nodes they took were cancerous.  Back to chemo and added radiation.  He has had pneumonia twice and is on oxygen (5L) and able to sustain high 90's on his O2 as long as he is sitting, any movement and it drops to low 80's to high70' (sometimes lower).   I am having a hard time staying positive and strong for him and our children.  I am a planner and trying to stay one step ahead of everything, but it is hard to do when you don't know what is coming next.  Just need someone who has gone thru the same thing or is going thru to talk to.  SORRY SO LONG

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Trtlvr
Posts: 1
Joined: Mar 2019

Hi CarolynL,

I am new here too and came across your post while scrolling. I'm sorry to read about what you are going through. My boyfriend of nine years was also diagnosed in January. Originally he was given the diagnosis of unknown primary because they found two tumors in his small intestine. The PET scan showed a mass in his lung, on his liver and in his bone also. He has always been active and never smoked. This has devastated us. Since starting treatment he is constantly fatigued. I feel that he is getting weaker everyday and I'm scared about what is going to happen. I also struggle with staying positive in the face of this monster. 

ODAAT
Posts: 1
Joined: Mar 2019

I was diagnosed just before Christmas, and was overwhelmed at first by the expirience. Went to primary with a wheeze that had lasted over a month and was sent for a chest xray.

Pulmanary Dr. then requested a CT scan in a very short lenght of time. That was followed by a PET scan and MRI and shortly after that a biopsy to determine type of cancer which had taken over left lung. (I believe that was the order of tests) The MRI revealed a spread to liver which moved diagnososis to stage IV.

Pulmanry Dr. ordered radiation which was very helpful in achieving breath, followed by CHEMO which I hope is halfway completed. Doing quite well do to new technology and updated treatment techniques which does include immuneotherapy.

Have a lot of hope that others have access to a team of Drs. with the equipment and knowledge enough to say "our aim is to cure you"

Bottom Line is, one day at a time

ODAAT

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