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Newly Found Lung Mass

ClaCla
Posts: 137
Joined: Jul 2017

I had told Kimberly (kfs52) and Griffithds that I would start a new forum topic.  CSN member Loretta had suggested a separate forum, so that it would be easier to find responses.  I learned just a few days ago that a CT scan showed a 3 cm mass on my lung and my doctor says is very unlikely that it is NOT cancer.  I hope to find out tomorrow when I will get a PET scan.  Kimberly (kfs52) and Griffithds are at the same phase of discovery.

starrkat
Posts: 8
Joined: Jul 2017

Just wanted to let you and Kimberly and Griffithds know that people are thinking of you all and hoping for the best. I was in your position a few months ago and was very scared. But then treatment started and everything happened so fast, I didn't have time to be scared anymore. 

 

griffithds
Posts: 2
Joined: Jul 2017

Thank you so much Starrkat. I feel a little better today in that my PET showed lung is primary site and no metastases. First meeting at Mayo/Jax on Monday so I'll keep every posted as I travel this journey.

starrkat
Posts: 8
Joined: Jul 2017

That's great news! Let me know if I can answer any questions.

Connie

Meggie1984
Posts: 14
Joined: Aug 2017

 I saw  a few of your posts with ClaCla and I was wondering how you are doing.  You and I---plus ClCla and Kimberly---are at about the same poin in this most unwelcome journey I too had a PET scan on July 21st anad on July 25th my pulmonologist tole me that the nodule he had seen on the CT scan had lit up in the PET and that I should go for a biopsy.  I has my biopsy thi spast Tuesday but i wont get the rsults until this coming Tuesday, Aug. 15th.  I hope you are feeling positive about your decision to go to Mayo Clinic Jax.  They are one of the bst in the country.  And I hope they are taking good care of you.  

kfs52
Posts: 31
Joined: Jul 2017

Please let us know how your scan goes - I am sending you best wishes from here! - Kimberly

ClaCla
Posts: 137
Joined: Jul 2017

Thanks, starrkat and Kimberly, for the kind comments.  PETSCAN is scheduled for this Friday evening, July 28.  Then doctor will be calling with the results around the following Monday or Tuesday.  Starrkat, is yours lung cancer?  What kind of treatments are you having, or would you prefer not to discuss?  Thanks again.

ClaCla
Posts: 137
Joined: Jul 2017

Starrkat, I just read your post about where you are at with treatment for lung cancer.  So I withdraw my question above.  Wishing you the best.

starrkat
Posts: 8
Joined: Jul 2017

ClaCla, I updated my profile--added some info on side effects, etc. If I can answer any questions about what comes next, please let me know.

 

Connie

kfs52
Posts: 31
Joined: Jul 2017

Griffithds - please help me understand your PET results. What does it mean when they say "lung is primary site and no metastases". I consider myself pretty educated, but these doctors speak a language that we don't understand and they purposefully don't try to explain it to us - I think to keep us dependant on their advice instead of making decisions on our own. Who are you meeting with at Mayo/Jax on Monday, sorry, I mean what kind of doctor. Sorry if I sound so intrusive and you don't have to answer of course if you don't want to.....Did you get your PET results the same day that you took the test? Kimberly

ClaCla
Posts: 137
Joined: Jul 2017

Griffithds, so glad to hear your good PET results.  Starrkat, thanks, I'll check out the update in your profile.  Kfs52, you may need to change doctors. This is just too much to go through without a personable, communicative doctor.  From experience with friends and a parent with cancer, I am pretty sure "lung is primary site and no metastases" means that the mass originated in the lung and has not spread anywhere.  Glad we have this site to discuss it all.

kfs52
Posts: 31
Joined: Jul 2017

Griffithds that does sound like good news!

ClaCla - you are not wrong, I feel like I am learning or trying to learn what is going on all by myself. Switching pulmonlogist would be the best thing for me. I made an appointment with my GP on Friday just to try to review with her what has occured and see if she can help me to understand what everyone has written in their notes. Maybe she will have a good recommendation. 

 

 

ClaCla
Posts: 137
Joined: Jul 2017

Starrkat, did your treatments cause you to lose your hair?  Not important in the big scheme of things, but I'm wondering what might be ahead.  Also, did cancer or the treatments cause you to lose your appetite?  My husband and I have been on the Jenny Craig food plan for a couple of months and have each lost about 23 lbs.  I'd like to lose another 7 lbs, but since I learned about the lung mass, I'm wondering if I'll be losing weight anyway if I do have cancer.  It's a healthy food plan, so I don't intend to stop it unless my doctor tells me to stop.  Thanks for sharing your experience.

starrkat
Posts: 8
Joined: Jul 2017

Yes, hair started falling out about two weeks after first chemo treatment--slowly at first but then more and more. I was prepared for this and shaved my head before the next chemo round started. I had a wig, scarves, and hats all ready to go. 

Also yes, I lost appetite and weight (about 25-30 pounds so far). Your oncology team will most likely give you anti-nausea drugs (probably steroids) along with pre-med fluids prior to your chemo drugs. They may also give you a prescription for oral anti-nausea drugs to use between chemo cycles. Zofran worked the best for me. But I have not had more than a few nausea-free days since this whole thing began. Taste and smell has changed completely for me; I can usually count on yogurt, Ensure, bananas, and Special K with fat-free milk. If you have radiation, you may have nausea and pain associated with that. I don't see why you couldn't continue Jennie Craig. If your course is like mine, you'll be lucky to find anything that doesn't make you sick. Sorry to sound so pessimistic, and keep in mind that your experience could be completely different from mine. 

I went to many web sites for information on lung cancer (American Cancer Society, American Lung Association, Mayo Clinic, Web- MD, verywell.com, etc.) and found some good information. It seemed the more information I found, the less scared and more curious I was.

I hope this helps. Let me know how your PET scan went when you get the results.

Connie

ClaCla
Posts: 137
Joined: Jul 2017

Thank you, Connie, for the information.  Very sorry the side effects have been so rough.  You are so good about sharing info on the CSN website in spite of what you're going through.  So again, thank you.  Had my first PET scan today, so will know more next week.

Kimberly, how did your appointment go with your primary care physician today?  Did she help shed some light for you?

kfs52
Posts: 31
Joined: Jul 2017

Everyone

I went to my regular doctor and she wants me to see another pulmonologist. So I have my PET scan tommorrow, old pulmonologist Thurs and making new appt with new pulmonlogist this week.

I wanted to ask - does anyone cough up blood? I cough up blood like this evryone once in awhile for a couple of hours in each event.

ClaCla
Posts: 137
Joined: Jul 2017

Kimberly, no I've never coughed up blood.  That looks like a lot!  So glad your PET scan is tomorrow and that you got info to contact a different pulmonologist.  You and I will get our PET results about the same time, as I should hear from my pulmonologist no later than Thursday.  I hope someone posts a reply to your question about coughing up blood.  

GriffithDS, how did things go with your first meeting at Mayo today?

Sending good thoughts and prayers to both of you.

kfs52
Posts: 31
Joined: Jul 2017

Everyone

I got my PET scan done today. A horrible thing happened, becasue I was going to a new pulmonologist next week, I started asking for copies of reports and scans (electronic form). So when I left, I don't know about you, but they gave me a copy of my PET scan. And yep, you guessed it, I looked at it right once I got home. I spent an hour doing a flip out dance, took a xanax and now I am starting to calm. I don't know what I saw. I know if things light up - that is bad. Things lit up. 

Everyone, catch me up to where you are please! I think it will help me focus. I am parying for all of you.

Kimberly

 

ClaCla
Posts: 137
Joined: Jul 2017

Kimberly, I hope you've been able to achieve some peace since you posted about your PET scan.  I would have freaked out too, probably no matter what I saw.  My pulmonologist doesn't interpret the PET scan herself; she waits for the radiologist who specializes in this to provide his/her expert written opinion, and that takes a couple of days.  So when you see your current pulmonogist Thursday, that's probably what he/she will have on hand that you haven't received yet.  Were the lit areas in the lungs?  If I find any info on the Internet, I'll let you know.  Please be sure to keep us updated.  Have you checked out inspire.com, which is also a discussion site about cancer?  Hugz and prayers.

kfs52
Posts: 31
Joined: Jul 2017

Clacla,

Looking at the inside of your body is really creepy. But what I saw before I flipped out was lighted areas in the brain, the area in the lung that has been a concern was lit up (upper right next to esophgas, lower bowels area was lit up (but that makes sense if the solution is attracted to sugar). It seemed like there were a few small areas, but to be honest, I am not fully sure I really knew how to use the software. I can see the heart and they saw that is fine. But there seems to be two other irregular areas on each side of my low back sort of. Then they show that picture looking from top of head down the chest and it is lit up like bright christmas tree. 

Clacla, maybe you could ask for a copy of yours and compare.

Anyway, I am praying for you - Thursday is a long time to wait for results. 

ClaCla
Posts: 137
Joined: Jul 2017

Kimberly, when you say they are "lit up," are the lit areas red, or various colors?  I'll ask about getting a copy of mine, and will keep you posted.

kfs52
Posts: 31
Joined: Jul 2017

Clacla

It depends, the software seems to let you change the colors of the 'interested' portions to any color you want. But there is a big difference between the 'not lit' portions and 'lit' portions. Believe it or not, we are all entitled to one copy for ourselves of the copies of our tests. 

Kimberly

ClaCla
Posts: 137
Joined: Jul 2017

Hi Kimberly, yes, the American Cancer Society says everyone should ask for a copy of PET scan up front.  I just forgot, so I'll call to find out how to get it quickly.

I"ve put together a list of questions for my doctor when she calls me with the results, and thought I'd copy it here in case it's helpful to you:

Scan Results

  • If cancer, what kind.
  • Where it originated and whether it has spread to lymph nodes or other parts of body.
  • Show any difference in tumor size since CT scan?  Was 3.5 x 4.5 cm.
  • Name of affected lobe, like superior or inferior lobe.
  • How definitive is the scan?  How accurate in detection of cancer and determining type and stage of cancer?

 Next steps 

  • Biopsy?
  • What kinds of treatment are likely to be used to treat this type of cancer?  Is surgery likely?
  • Survival rates of this type of cancer at this stage?

I hope to hear from her today, but it may not be until tomorrow.   Best to you.

ClaCla
Posts: 137
Joined: Jul 2017

Was glad I had my list of questions above ready when the pulmonoligist called this morning.  The results of my PET scan are just about as good as can be expected.  There is 99% chance that it is cancer, but it doesn't appear to have spread.  Doesn't indicate what kind of lung cancer, but mass has not grown since CT.  Pulmonologist talked with surgeon and he expects to surgically remove the lobe, no biopsy first.  Lymph nodes don't appear to be affected although there are a couple nearby that are a little questionable that he will be biopsying.  Otherwise there is no evidence of it having spread anywhere.  I have a breathing test this Friday to confirm I'm eligible for surgery, but that shouldn't be a problem. Guesstimate is that the surgery will have been done within a month.  She doesn't know whether chemo or any other treatment will be required.  Surgeon will have more answers.  Waiting for a call from his office to schedule an appointment.  Thank you, God.  I pray my buddies Kimberly and Griffthds get some good news as well, but we'll be here to support each other either way.

kfs52
Posts: 31
Joined: Jul 2017

That is very good news, well the best one can hope for when we are at this stage! I am so glad for you. 

Did the pulmonlogist have all the answers to your questions?

I would still get a copy of your PET scan - I am a very visual person and I think it helps to actually see what it is you are dealing with. It is scary sure, but at least you can look at CY's and PET and see for yourself if there are changes.

I have my appt with my pulmonlogist in the morning - he is making me go in - he won't call me with results.

I have new pulmonlogist appt next Thursday.

Wishing best thoughts for all of you as we make this journey!

kfs52
Posts: 31
Joined: Jul 2017

Everyone

I am so confused. It is official, at this point I dont trust this pulmonologist to even correctly order me a Big Mac.

I took Clacla's questions in with me prepared to ask them all.

He first told me that I had maliginant cancer in my lung, neck, abdomen and pelvis and it was probably Stage 4. Then I started asking the question down Clacla's list.

When we got to question 3, any difference in the size since Ct scan, he stopped and said 'sorry' he made a mistake, that I dont have cancer in my neck, abdoment and pelvis - just my lung. And that maybe it is not Stadge 4 but a Stage 3 or 3a.

I went back to my question and he said it is the same size 5 x 8 x 5. I said that is not the same size, in my CT it was 3 x 3. He said oh yeah, its growing fast - we better do something quick.

The only thing I wanted to do quick was get out of his office.

Clearly he did not bother to read the report before telling someone he was handing them a life sentance. 

He said he wanted to do a biopsy, but as I said, i dont trust him to order me a Big Mac, much less stcik something down my throat. I asked him why could he not just test all this nasty bloddy stuff I am coughing up - he said 'good idea' let me get you a sample cup.

I left, I am not going back, I have a second opinion next week. 

 

ClaCla
Posts: 137
Joined: Jul 2017

OMG, what a terrible experience, Kimberly.  I'm sure you'll let your Primary Care doctor know so she doesn't recommend him again!  For the heck of it, Google his name and see what comments and ratings others have left about him.  You might also want to do that about your new pulmonologist.  I'll private message you.

Meggie1984
Posts: 14
Joined: Aug 2017

Hi Everyone,

I jujst found this site an hour ago and was surprised----delighted????----well, that's probably too strong a word for finding a cancer page---but anyway, glad to find all of you.  I am in pretty much the sme place Kimberly and ClaCla are.  This May I  went for a routine visit to my pulmonologist whom I last saw  in May , 2016, while I was recovering from preumonia.   He had taken a chest X ray at that time and told me there was no more pneumonia  but to follow up with a visit in 4 months.  I kept putting off the follow up----there seemed no urgent reason for it--but in May of this year I finally went back

This time he took anothe chest X ray and told me :  I see a small spot on it---probably scar tissue---but have a CT scan anyway.  So in a few weeks I had a CT scan and that scan was aslo inconclusive.  He then said   to wait 3 or 4 weeks and have a PET scan.  I had the PET scan five weeks later on July 21st.  On July 25th  my doctor first explained how the PET scan works and then told me It had lit up in the area of the nodule on my lung.  He said---I'm sending you to a surgeon  I know who is an expert  in this field because if it tuns out to be cancer, probaly surgical removal is the best option for you.  I went to see the surgeon last week, Thursday July 27.  I brought my daughter, an RN along.  He spent an hour with us explaining the PET scan findings.  He said there is still a chance that  the nodule is inflammation but we didnt get the impreesion that he expected such an outcome.  He explained that if it is cancer, three options are available:  wait and see which he didnt recommend; SBRT, a fairly new type of radiation treatment or surgical removal which he recommeded.  ( Though like a friend said to me, "Well.he's a surgeon.  He's probably not going to recommend radiation."  

Anyway, his final r ecommendation was that I should have a needle biospy which is scheduled for this coming Tuesday, August 8th and then we will have a definitive diagnosis.  If I do need surgery, he will be able to do it robotically.  I saw him do one on a Youtube video--quite amazing.  I am still open to the radiaion treatment SBRT which only takes five days!  I do have a trip scheduled for the end of September.  Since my husband passed away in 2009, I have done a lot of traveling---solo---joined occasional group tours and rented apartments in some European cities.  This coming trip would be my third stay in Paris where I have an apartment reserved for three weeks so I have been practicing my French.  

This is not my first time around with cancer.  I had surgery for colon cancer, stage !!!, 25 years ago and then chemo every week for a year.  Once again, I am happy to have found this forum, especailly because i wanted to let it be known that there  are many more options out there for the treatment of lung cnacer than there were even five or ten years ago.  Kimberly,  your encounters with that first doctor are a true horror story but I love the black humor that you used to help cope with it.    I will keep you all posted on the needle biopsy  experience and also on the results.  Your new friend, Meg

 

 

ClaCla
Posts: 137
Joined: Jul 2017

Hi Meg, nice to meet you, even though the circumstances are lousy.  It sounds very positive that the spot on your lung is being called a nodule and not a mass.  Good luck with the biopsy, which should tell all.  Congrats on the 25 years post-colon cancer! Mine is a 3.5 x 4.5 cm mass, and my doctors don't want me to wait for a biopsy.   So I'm already scheduled to meet the surgeon for a consultation this coming Thursday, and then to have lobectomy just four days after that on Aug. 14.  My husband and I are so glad it's being handled so quickly, so we can understand the severity.  Keep us posted on how it goes with the needle biopsy!  Best success. 

Meggie1984
Posts: 14
Joined: Aug 2017

How nice to hear form you.  I have been reading all your posts ----in fact, I read them all a few times. I learned a lot and I copied your set of questions to use when I see my doctor again.  Just as you say, lousy news can be good news.  To think you have your surgery already scheduled  for only a week from tomorrow is a prime example of lousy good news.  Wonderful, I would feel like you and your husband----whatever it needs, get it done   The waiting around can be the worst part---as you can tell from reading so many posts.  From looking at the dates on this forum, it strikes me that this time last month the idea of lung cancer may have been the farthest thing from your mind.   In the past week after I told my family and some of my friens that I might ned a lobectomy, several of them have told me of peole they know who had one and are doing fine, thank you.  All goes well and it wil be the same for you.  I will let you know the results of my biopsy and do let us know how you are doing after the surgery.  You go,girl!

kfs52
Posts: 31
Joined: Jul 2017

Clacla, you be strong, I know your dates are very quick, but take your own advice - take lists of questions and make sure you get detailed answers. Like Meggie, I also printed off your questions and used them and intend to do so again this week with the 'new' pulmonologist.

Meggie it sounds like we were diagnosed the same way. Actually mine started with a weird earache, a week of steroids later, then my chest hurt. Its strange, I still get that weird earache on some days and no one has been able to explain that to me and it actually hurts pretty bad sometimes. 

Anyway, it sounds like we all have a busy month!

I just got back from visiting family for the weekend. I am determined to not tell them anything. I do not want to scare them or ruin thier joy. It was hard, but I know this is the right thing to do.

Take care and be strong my friends.

Kimberly

ClaCla
Posts: 137
Joined: Jul 2017

Met with surgeon this morning. I was glad to hear if this is cancer, it is probably in the NSCLC category from the way the PET scan looks.  At this time he thinks it is probably at stage 1B to 2A, although more likely to be 1B, since it doesn’t appear to have spread (although there is a suspicious lymph node or two, that are really thought to be okay).  If it is cancer, he will know immediately following surgery, on Monday, Aug. 14.  And generally the full pathology report should be back by Friday, Aug. 18.  Hooray, he can do it by VAT rather than open surgery.  I should be in the hospital 5 days and recuperation should take 4-6 weeks.  If it is cancer, I will be referred to an oncologist who will determine whether chemo is necessary.

I was nearly frozen with fear last night and this morning; took great effort to get dressed.  But my husband and I feel a lot lighter after the consult with the surgeon.

I am especially eager to hear how everything is going for Kimberly (KFS52), GriffithDS, and Meggie 1984, who are about at the same discovery stage as me. 

Thanks for everyone's prayers and good thoughts.  Sending blessings to you.

 

Meggie1984
Posts: 14
Joined: Aug 2017

My dear Clacla

I am thinking of you today as you undergo your surgery----I am thinking of you all the time:  sending love, courage, prayers and hope on their way to you.  Meggie

kfs52
Posts: 31
Joined: Jul 2017

Everyone

I just got back from my second visit with the new pulmonologist in 24 hours. I took one of those tests you take where you breathe a lot to prove you can survive surgery or a procedure. I told the nurse of the mess up with my pulmonologist (i.e. the whole you have Stage 4 cancer by mistake thing). The nurse came back the told me the doctor had a patient last year who came in after going through chemo only to find out that he never had cancer. This guy worked in some field where they put cotton in their nose and ears and a piece broke off and went into his lungs and everyone called and treated it as cancer. This doctor took him as a patient and finally got the cotton out of his lungs and he felt so much better. 

Guess that explains the power of a second opinion huh?

Meggie1984
Posts: 14
Joined: Aug 2017

Hi Kimberly,  What a fascinating but scary story.  However, the  story does make it seem as though your new pulmonologist has a lot more on the ball   

Though, actually, your fist guy shouldnt even be loowed to practive.  Your experience with him was a true horror story.  You mentioned that this was your second visit in 24 hours.  Have you learned anything about here you are really at -----do you even have lung cancer?  Any explanation for the blood?  Coughing up blood has to be very upsetting.  

 

I finally had my biopsy on Tuesday----2 week wait because the dr who does them was on vacation  What else is new.  First, the scheduler told me I would hear one way or the other withing 24 hours.  Then just after the biopsy a nurse there told me 2 or 3 days.   Yesterday,  I called the office of my pulmonologist and asked her when I cold expect to hear.  They are all very caring and concerned over there.  I repeated what I had been told.  She said, "Oh, I'm so sorry.  We wont even get them back here in the office for five or six days  He always calls his patients the minute he gets results but it will nprobably not be until this coming Tuesday.  

Another week of not knowing---although i fully expect a diagnosis of cancer---hopefully Stage 1 since the spot has been termed a nodule. I wenr online yesterday and set up an pnline account called MY CHART--NYU since my guy is one of their doctors.  I found my scan results already posted online----chest X ray May, 2017----CT scan June 2017----PET scan July, 2017.  The only words that jumped out at me wee:  "---hypermetabolic activity worrisome for malignancy."        If I have to have surgery---and that is what I expect---I would like to get things moving-- at this rate I'll be in the hospital for Christmas (Joke)  Cla Cla has been fortuante in that her doctors are not wasing any time. She will be through with the surgery on Monday and please God, she will be feeling up and positive.  Good thoughts to you, Kimberly.  You seem to have a good, dry sense of humor----"I wouldnt trust him to order me a Big Mac"-----and, being Irish, wwe use black humore to deal with everything.  God bless

  I

 

 

sondrahays's picture
sondrahays
Posts: 23
Joined: Aug 2017

My husband was diaognoised in June of this year, after three months of being told by several doctors, ER that he had Pneunomia. he was on antibitocs for months. His cough just presisted and got worse. we had a xray 5/16 said he just pneumonia. two weeks later a repeat and he had one mass that was 8.5 x 3.5 or close to that. our heads were spinning. we have gotten treatment for two rounds of chemo. thankfully his PET and other test have been clear that he has it nowhere else. but we were told by the doctor treating him, that he was still considered extensive and they would not be going for a cure because of th size of the tumor. again, we were baffeled by all this. we did the first two rounds and his cancer responded better than average shrank over 50% and his doctor still told us he would not do radiation AND did not tell us how much he had responded to chemo.  he was just given him quality of life 12-18 months. I was so upset that this doctor would treat us as if we just had to deal with this and take treamtent has he wanted us to. I told my husband, we were going again for another opinion (third one). thank goodness we did, he is now going to be treated at the Cleveland Clinic and will get raditation and chemo together, while they said they could not guarantee a cure, he had a chance.!! And that was music to our years. my advice is get as many opinions as you can, and do not let one doctor decide your fate. you are in control of your body and your treatment plan. I read all these blogs above, prayers and best wishes to you all.

Meggie1984
Posts: 14
Joined: Aug 2017

Hello Sondra, I read your post and felt so upset for you and what you were going through.  But like a happy ending in a scary tale, when i saw Cleveland Clinic my heart rejoiced for you.  There are surely  some cancer hospitals in the US as good as the Cleveland Clinic but none better!  When cancer comes into your life it is like a bad dream----something you have no control over.  But we do have control about how we are going to deal with it and God bless you for holding out for that third opinion.  No matter what happens from now on, you will have the comfort of knowing that you did everything humanly possible to handle this most unwelcome intruder in your life.  I love the photo you posted of the two of you---it's like I can feel the love between you.  Good thoughts to you and your husband.

sondrahays's picture
sondrahays
Posts: 23
Joined: Aug 2017

Thank you Meggie for the kind words, I have found relief in this site that there are others who understand and can relate to what we are going through. have you been to the Celveland Clinic? We leave tomorrow for his first treatment Wed starts chemo/radation sametime. nervous, but also very happy we are getting a shot at this! And you are right, now moving forward I can know I have done all possible to give my husband a chance, he truly is my soul mate we have had very little time together before he got sick. but I feel like we have been together forever. I pray and I keep faith. again, thank you for the kind words best wishes and thoughts to you as well.

 

 

Meggie1984
Posts: 14
Joined: Aug 2017

hello Sondra

You will be on your way to Cleveland very soon.  There are a few medical people in my family and they are very knowledgeable about the best hospitals in the whole country for various conditions. A few of them mentioned that MC Andrson in Houston , Sloan Kettering in NYC and the Cleveland Clinic were among the oustanding hospitals for cancer in the US.  My brother-in-law was diagnosed with Stage !V melanoma with mets 12 years ago.  He was treated at Sloan and is living his life happily.   So anything  is possible.  You both have such a good spirit and good atitude--it will help you go far.  Thank you for your well wishes for me.  

kfs52
Posts: 31
Joined: Jul 2017

Meggie,

Have your gotten your biopsy results yet? I know my doctor said it could take a few weeks to get them back once he does my procedure tommorrow - I just don't know how you paiently wait for that without going crazy....

 

To Clacla - you are in my thoughts and prayers today my friend, I just know you came out of surgery okay and will update us when you can.

Kimberly

Meggie1984
Posts: 14
Joined: Aug 2017

Hi Kimberly

I didnt realize you were having a biospy.  Well, as i wrote elsewhere thee was nothing to it---no pain, a little trace of discomfort. But tomorrow  is a week since I had it,  The person who scheduled it told me it would only take 24 hoursfor results, the nurse at the biopsy told me it generally takes two to three days.  the day after the B I called my pulmonologist and his assistant told me it wouldd probably be a week-----which is tomnorrow.  I cannot---cananot!---imagine waiting A FEW WEEKS  to get the results.  One week has been difficult enough.  I will post when I know.  There is a chance it is not cancer but the doctors give the impression that they expect it will be.  Take it easy---I will be thinking of you.  I wrote a little text to ClaCla but I think I sent it as Private Message unintentionally----my mistake.--but no harm done.

kfs52
Posts: 31
Joined: Jul 2017

Meggie,

I dont know about you, but I just had my bronch this morning and I feel icy and I am coughing up alot of blood.

When I left the hospital, they gave me a report. It is long, but the important parts go like this:

Findings:

Sharp main carina

Enfobronchial mass occuding 100% of RUL bronchus and compressing bronchus intermeduis as well. Unable to pass bronchoscope through bronchus intermeduis. Mass is friable.

Summary:

Lung mass suspiciuos for cancer vs carcinoid

Recommendations

Follow results of cultures, cytology and pathology.

Then a bunch of do's and don't for the day.

If anyone has any imput on what the above means, let me know. They just handed me this report. It sounds like he is saying my whole right side is 100% blocked with something that may be cancer.

Meggie - maybe these are the intial report that you were expecting, did you get something like this?

 

Meggie1984
Posts: 14
Joined: Aug 2017

Kimberly

It was only this morning that I realized that I had been given a needle biopsy and that possibly you were having the biopsy that puts a tube down your throat.   All I know about your kind is what I learned from reading on this site.  I am so sorry that it was so unpleasant   As far as your report goes, I am amazed----dumbfounded!----that you were handed  a written report with no explanation whatsoever.  As for me, my pulmonologist sent me to a radiologist in a different hospital than the one he is affiliated with.  I have to get my results from my pulmonologist and they have not received the report yet from the other hospital.  It's been eight days of waiting now---no fun but I'm thinking I would rather wait and have the results explained to me by a sympathetic and caring doctor-----to whom I could ask any question I wished to----than to have a  report handed to me after the procedure which might as well be written in Russian for all I could get out of it.  I have read your report five times.   What is a "carcinoid'  ?Is that what you might have?  Because all the report says is "suspicious for cancer".  Maybe there are people who will read your post and be able to explain it.  But it is far beyond my mental efforts.  Sorry again for wrong news on biopsy

kfs52
Posts: 31
Joined: Jul 2017

I have an appoinment with the pulmonlogist (he is the one who perfromed the procedure) Thursday, he wants one more test done before we review all the test restuls from the last week (3 tests, the spiro whatever, this biopsy, and Quantitative V/Q lung scan). Then he will review where we are at on Thursday.

BUT, nothing means anything until the biopsy results come back. AND, that is what we wait a couple weeks for.

They also gave me a whole list of pictures of the bronch procedure so I can see the mass for myself. Actually it looked quiet there until he started messing with it, 30 minutes later it was inflammed.

Now I feel like given the night I just might be able to cough it out myself - or choke on it, who knows.

I think I should have asked for drugs for when I came home!

Meggie1984
Posts: 14
Joined: Aug 2017

Kimberly

So it really is a few weeks wait for the biopsy results.  Well, you certainly have had a lot of tests lately.  Bad luck for you that they need so many tests to figure out what is gong on.  The waiting is almost impossible to contemplate. And youre right---you should have asked for drugs when you came home.  That way maybe you could have zoned out for the next few weeks.  I will let you know my news whenever I hear it.  

kfs52
Posts: 31
Joined: Jul 2017

Meggie, yes the results are what they are. We just have to wait. I think the doctor can guess, but I have looked at pictures online of what they saw in the bronch and it is still anyone's guess what it is - util that biopsy comes back. So I think what you think you should have gotten is the report and the review of the bronch report. You should see if you can get them to fax or email it to you. 

Only Clacla proceeded to surgery without a biopsy first and those results, and thank goodness it sounds like she is recovering well. 

Yes we just wait and find a way to get this off our mind!

ClaCla
Posts: 137
Joined: Jul 2017

Kimberly, how frustrating for you have to endure these wait times!  You two, Meg, although you could be getting yours this week finally if I understood correctly.  I need to go back to sleep right now, but wanted you to know I'm thinking about you both, and how frustrated I am for Kimberly.  Chat with you very soon. XXXXX.

kfs52
Posts: 31
Joined: Jul 2017

Clacla - you are right! I have another test today, I guess a lung test. I just feel so sick, tired and defeated. Since the bronch, I feel like my pnueomia has come back - coughing until my sides hurt, mucus, blood and just out of breath. Now to have to do another test - well I just feel like this has to be the last thing I do because evertime they do more to me - I just feel worse. AND they still have not diagnosed me - so it isn't even like  any of this is a cure. I know I just have to make it through one more day of this - sorry for dumping on everyone today.....

ClaCla
Posts: 137
Joined: Jul 2017

Kimberly, I am so concerned about you.  Have you told your doctor that after each test, you are sicker?  Can they give you anything to control symptoms while you're waiting to get a diagnosis?  So sorry.  Hang in there.  I'm praying help comes very soon for you.  You mentioned you only have to hang in there for one  more day of this.  Are you expecting to hear a dx tomorrow?

Tomorrow may be a big day for Meg and me as well, since Meg and I expect biopsy/pathology reports this week.

Am probably going home today, which is a day earlier than expected.  But may have to go home with oxygen for a little while, as my oxygen sats are not staying up very well without oxygen yet.

Waiting for news from both of you.  And of course I'll keep you posted.  Kimberly, I hope you can at least get some rest while you're waiting.

Hugz to both of you.

kfs52
Posts: 31
Joined: Jul 2017

So sorry. I didn't mean to sound so disturbing. I just feel terrible. All I meant was I finished the test the morning now and I have one more visit with the pulmonlogist this afternoon on the books.

Then I am done - until someone gives me some answers - no one elese can touch me because it feels like each time they keep doing something - I feel worse.

I am wheezing and coughing up chunky blood - it is gross. Even the lady at the drug store when I went for some 'breath easier' stuff said to me 'are you all right!!', now of course it did not help that I have bandages on from IV's and a hospital band, I am wheezing and coughing - well it is clear I can go no where else until someone fixes me without looking like an idiot. 

Anyway, I am going to make this doctor give me some drugs - I have done what he has asked - now he needs to make me feel better - seems like an easy trade.

Clacla I am so glad you are getting out of hospital maybe today or tommorrow. It always feels like those hospital people are holding you hostage, but when they say your stats are not up, you need to wait until they come up. I really forced my way out of the hospital and it was very difficult coming home. But, I know you are going to feel so much better when you get home!!

 

 

ClaCla
Posts: 137
Joined: Jul 2017

No, I'm really not rushing things; I am at the accepted part of the healing process to leave the hospital.  If a chest xray comes out clear in the next hour, then I'm ready.  But I will need to use oxygen for a while longer.

Good luck this afternoon; I hope they give you something along with a diagnosis to give you some relief until you begin real treatment!

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