I began posting here last summer when I found out that a 1.5 lung nodule on my RLL. This was found during a chest xry while I had a respiratory illness of some sorts. I have been lurking on the boards and although haven't said much since, felt it was important I send you all a report out because I found such peace talking to some of you and wanted to show that although a confusing and scary journey.... there are others going through the same! and with good outcomes. Not only good outcomes but life lessons learned as a result of the travels....
Alittle more history: I went through an attempted needle biopsy when we found the nodule but ended up with a pneumothorax and the procedure had to be ended. So-I still didnt know if the nodule was begnin or malignant. I am a former smoker (recently quit 2 wks prior to my lung surgery) who was incredibly scared I had lung cancer at age 32. I opted for a wait and watch approach however over the course of a year I threw 2 blood clots (still unsure if the nodule or something else caused these) and knew it was time for me to close this chapter in my life. I had to know for sure, what I was dealing with.
I went in on Sept 8th for the VATS procedure. Although extrememly anxious about the surgery and the po ssible results- I felt I was in one of the best hospitals in the country (Mass General) and I had one of the leading thoracic surgeons in the country so found comfort at the least-knowing I was in good hands and whatever needed to be done, would be done!
I was in the hospital for 4 days and came home last Thursday. I was told I am cancer free (YAY) but a slew of tests have continued to be ran because although the center of the nodule showed a granuloma, the outer edges showed a active infectious process going on. They have since ruled out TB and leaning towatds some type of a fungal infection but there is so much out there-I;m not sure I'll ever know. I had a wedge resection performed so the nodule is gone, but of course I would like closure but I'm doubtful I will get it on this one.
All I can do for now is count my blessings, continue to heal, and say prayers for all of you going through the exact same journey. All my best,
Hello Meredith It was a God-send that I was "trolling" through the boards tonight and found your post. I thank you for taking the time to share your experence and glad that you are on the mend now. I was dx with rectal cancer 4 yrs ago and chose to have no treatment after the mass was removed, but to aggressively monitor with CEA & CT scans every 3 months. I thought I was doing great until this week. My CEA jumped from 3.6 to 7.9 in less than 3 months. I am still a smoker and my dr has been monitoring a 6mm nodule (uncalcified) for change. It sounds like mine is located the same place as yours was. It's been over a year and it does not show any changes, yet the CEA has freaked me out. I suppose it has also freaked out my dr because he sent me to a surgeon at M.D. Anderson this afternoon and I am having a PET done tomorrow. The surgeon said that it will be a "challenge" to do the surgery, due to it's 'deep, centered' location, and I will have to have the VATS surgery that you had even though at 6mm, it might not show up on a PET. Due to the location of the nodule, he might not be able to do it laproscopically (sp?) Now also scheduled for yet another CT next Monday. I haven't stopped crying long enough to look up any info, but he did say that the pain would be "considerable." I am terrified. Could you please tell me about your surgery? Did your dr control the pain well? Are you still in a great deal of pain? What is your expected down time? Please give me as much info as you can. Reading about it at another site is never as informative and honest as from someone who has experienced it. Thank you in advance for any help/advice you can give me and God bless you. JJ
Praise God it wasn't cancer! I'm not sure If I had talked to you when you had posted when things were in question, but my journey was very similar to yours. At the age of 43 I went through the same with a nodule in my right upper lobe. They did CT scans every three months and on the 6th month it tripled in size and became "spiculated"....PET scan showed "hypermedobolic uptake" which can indicate cancer. I was scheduled for a staging procedure called EBUS/EUS with biopsys of the lymph nodes as well as a brushing and washing of the mass which were inconclusive. I was scheduled for a open thoracotomy and a right upper lobectomy. By the grace of God it wasn't cancer! Negative for TB, Fungal, Pnemonia, viral, ect..It took several weeks for the diagnosis it turned out to be a rare infection called MAC or MAI (mycobacterial avium-intracellular complex). I wonder if Mass General has cultured your nodule for that? I had my surgery at a Mayo clinic. There is an up-swing with this infection particularly in middle aged women and the National Institute of Health, National Jewish, as well as University of Texas have all been doing major research with this infection. Its been around a long time and orignally was associated with HIV-AIDS, but now this up-swing is linked to young women that DO NOT have HIV nor AIDS, and it is confined within the lungs, unlike people who are HIV positive it is throughout their bodies but NOT in their lungs. They are searching for a common gene marker for why we women are getting this infection. My biggest surprise was that MANY Doctors are not updated with this infection or never even heard of it, and those who have heard of it still associate it with HIV. It's scarey for sure just finding a Doctor that has the knowledge to treat this. Anyway, my point is that my MAC did not present typical. It presented like cancer in a solitary spiculated nodule, usually there are multiple nodules with MAC, so it is possible to have MAC with only one nodule. If they have run all your tests and still are inconclusive maybe you can mention MAC to have it tested for that as well. Mass General is an awesome facility and it sounds like you are in good hands but if they still dont have answers it might be something worth mentioning or worth ruling out if you want answers as to what it is.
I had my surgery in November of last year, and I now have 2 "micro-nodules" in my right lung and another in my left lung. I've opted to "wait and see" and do a High resolution CT scan in Febuary and see what is going on in there. THis infection can be very difficult to treat, and at this point I'm in that zone where they don't know for sure if this is MAC as well or something new brewing. So we will see. My pulmonologist has told me that if I have ANYTHING new to come in right away for testing. So I do feel like he is looking in my best interest.
I'm so happy for you that this journey has led you to great news at this point. As you can see I'm a "Mom of 2 sons" as well and this journey sure did turn my life upside down with the unknown. I will certiantly say a prayer for you as you continue to recover! Enjoy your children and embrace LIFE!
Thanks so much for the update! Take care, and God bless you and yours!
Will try to make this quick and just address the pain issue. Be firm with your dr. as to what you can take for pain and have had in the past that helped. Look up info on pain meds. Some drs. are scared to give anything more than a Tylenol. I have even had drs. tell they had to fight for pain meds for their relatives and did. My grandson had cancer surgery and upfront told the surgeon what he was deathly allergic to and what would work and only to give him that or he wasn't doing the surgery. The dr. listened. Hope you have good success with the surgery and relief of the pain. Even for tests I now know to tell the drs. what I am going to do to relieve my anxiety and pain or I am doing it. When I explained my position to the lung dr. He wrote out the prescriptions and said just tell the hospital what I had taken before arriveing. It makes the tests a lot easier to do.
JJSMITH, first off let me start by saying I am so sorry that you are going through all of this- You are NOT alone! I understand your fears, I was there... but I would do this all over again if I had too....
I went for a year playing the guessing game which did more on my nerves and left me little time to enjoy life. I think you are doing the right thing by having this done. You cant heal if you dont know what you are dealing with.
Ok-as mentioned I had the VATS on Sept 8th. This surgery is ALOT less invasive....Much quicker recovery. So, 2 weeks prior to my surgery I quit smoking. It was HARD. I wanted to smoke double what I did just to try and keep my nerves at bay but my surgeon warned me (and I read) that my healing time would be longer and possibly harder if I continued smoking. This scared me enough to quit. If you can, try to atleast quit a week prior, to allow your lungs the ability to clean out.
The day of,my surgery was scheduled for 8am. I arrived at the hospital at 6am and was prepped and in the OR by 7:30. The anesthesiologist spoke with me and gave me something to relax prior to going into the OR. (The surgery was 2 hours long) That is the last thing I remember until I woke up in the recovery room
I'm not going to lie. As with any surgery, I was sore when I woke up...but thankfully had a pain pump and pretty much slept for the first 24 hours. I have 2 small incisions. 1 under my right breast and the other on my back. I had a chest tube to help drain fluid but this was removed after the first 24 hours. Once that was removed I felt alot better. The pain pump was taken away after the first day and I was moved to oral pain medication. This was managed well and also forced me to get up and walk around. It is so important to get up and walk around. I did NOT want to move...but after a day of getting up on my own to the bathroom and taking small walks around the floor...I felt SOO much better. Walking helps expand your lungs. Its also extremely important to do the excercises they tell you do. Even once you go home...
I was in the hospital for 4 days but typically the stay is anywhere from 2-5 days. Once I got home I noticed I was more comfortable sleeping upright so I slept in a recliner for a week. I am on my 3rd week home now and feel pretty good! My scars have healed incredibly and after the second week I was suprised at how good I felt.
Please try to stay positive! Going into this you need your strength and positive thoughts...this will help you heal much quicker! I made myself so busy prior to going in that I didnt have time to think about it until I was being wheeled into the OR This helped to keep me calm.... infact I think I was calmer than my husband! I'm sorry it took me so long to write back....I havent been online in a few days but will be sure to check this daily if you have any other questions! I know how nerve wracking it can be and sometimes just knowing what to expect helps...
You are in my thoughts and prayers,
The Following User Says Thank You to momto2boyz For This Useful Post: Suzieqone (04-02-2012)
Thank you for sharing your story! This has me intrigued-I definatly want to bring this up when I see my doctor for my follow-up in a few weeks. The doctor that saw me in the hospital in regards to the lung diagnosis, specializes in infectious disease... but I do not recall him mentioning this while I was there? It's pretty ironic because I was just reading about MAC last week after googling infectious lung processes...but didn't really make the connection until your post.
I am going to read up on it a but more tonight so I wont pepper you with questions But one thing I did want to ask is if you had any symptoms prior to the discovery of the nodules...either time? My nodules were found because I got some sort of respiratory infection last March that I couldn't shake. High fevers, chills, bad cough....during a chest xray one of the doctors noticed the spot. My symptoms stopped after a few weeks and I was asymptomatic until I threw the 2 blood clots this summer. May not be related but at any rate pushed me to move forward with the removal of the nodule. SO- I really didn't have any symptoms aside from that initial respiratory bout therefore leading me to believe that whatever I might have is in a dormate state. They said outer edges were calcified and the inner nodule showed active infectious process going on.
Hmmm...I have so much I want to ask now- this email generated quite the thought process for me. Thank you
No I had NO symptoms at all. Mine was an "incidental" finding. I was having a pre-op chest x-ray for an unrelated surgery. They then ordered a CT scan and found the 6mm "stelate" nodule. They recomended to repeat scan every three months, and as I said at the 6th month scan it tripled in size to 1.9cm and became spiculated. I had no weeze, no cough, no crackles ect..I hadn't been sick with a cold or anything as well as my smoking history thats why they really thought this was cancer. The surgeon even told me this was the "classic case" of cancer being the shape and where it was BEFORE surgery. I told this man "I have defied the odds before", he said "Well, denial is a common reaction for someone being told they have cancer", I said "You call it denial, I call it faith, until you know FOR SURE its cancer, don't tell me it is ". He just sort of gave me this look like, Yup, she's in denial. Anyway the day after surgery he came in my room and said "You know, this is the first time in my career I was glad to be wrong", and frankley SO WAS I! It wasn't denial for me it was simply the fact was they didn't really KNOW for sure until then don't tell me it is. So you don't have to have the "classic symptoms" of MAC to have it. As a matter of fact Mayo clinic is using MY CT scan as a teaching tool for this infection because they were sure it was cancer. Plus the fact I had no symptoms of having a lung infection swayed them that way as well as the findings on the PET scan. So MAC can have many faces when it presents.
I live in the southeast, in which this infection seems to be more promenate in my state, BUT I do communicate with many women around the country from California, Arizona to Florida, Georiga, SOuth Carolina to Boston Mass, and NY ect..that have this infection. It's all over the world with different strains in different countries and as I said for what ever reason there is an upswing. It's in our water supplies, and the soil, and most people don't get it. The ones who are, their lungs are compromised in some way. It seems to also be common for the women who are getting it to be tall, thin women, although Im short but I am thin. There are also women who do not have the "thin" body stature also getting it. The major medical facilities who are studying it have noticed this link with the body stature as well as slight scoliosis which many of us have as well. So this leads them to believe there must be some sort of gene marker with women of this stature and lung defect who are getting this. Many of these women go to an Infectious Disease doctor for treatment which at this point my Pulmonologist said he would send me to one as well if we discover I do need treatment. Anyway, as I said IF you find they still don't have answers as to what was removed then this may be something they could actually rule out or in should that need arise.
I'm so glad to hear your doing well in your recovery at this point. I had one 10inch incision along my shoulder blade where they opened me up. I had the chest tube for 3 days and was discharged on the 5th day. I had some problems after returning home with my lung collapsing at night while I slept because I have sleep apnea as well. Plus I wasn't faithfully using my spirometor! I learned MY lesson for sure. That plays a very important role to recovery doing those breathing exercises. Anyway, at this point I feel pretty well. I do get out of breath if I over due in the heat but I also have several other medical issues that play a role in that. Otherwise on a daily basis my lung function is still within normal limits thank God.
Please let us know how you make out or whether you get an answer as to your results. I'm a firm believer in knowledge is power and so many can learn from our own experiences. I wish you well, take care, and God bless.
P.S. Just wanted to add it might be a good idea to get copies of your surgery report, CT scan reports, Doctor reports, as well as lab , and culture results so you can have accurate information to share with your other medical providers as well as to help you being able to understand what was done and found. You should be able to pick these up at Mass General on your follow up visit.
I have copies of all my records at this point its more like a 3" binder, but it has saved me so much time by having them on hand when seeing a new doctor or updating the ones I do have. Just a thought..
Last edited by Momof2sons; 10-02-2008 at 10:25 AM.
It has been a really long time since I posted. So many things are going on that it's hard for me to just sit down and take time for myself. I was one of the no symptom people. The nodules in my lungs were discovered when I had bronchitis. My doc sent me to a wonderful pulmonary doc who watched them stay the same for almost 2 years of CT Scans and a "clean" bronchopsy. At what was to be my last visit with him because there was no change he sent me for one final scan and it came back with a lot more nodules than 6 month previously. Like most otheres here he didn't know what it was so he sent me for a PET Scan which had over the top uptakes. Next was to a thoraic surgeon who told me all sorts of horrible things he thought it might be! My poor family was a mess when they found out the VATS surgery was being done in the cancer center of the hospital! I figured no point in being upset until there is a reason but they tell me I'm too laid back about everything! Anyway 4 days later I came home with the chest tube still attached to my lung and the surgeon's diagnoises of TB. Two weeks later (after a long phone talk with the pulmonary doc about other things it could be) and being quarrentined all that time it was determined to be MAC/MAI. I never went to an infectious disease doc because my pulmonary doc hads treated several cases of MAC including one of his family members. Now here I am. I took the meds for about 2 years. Now it's just every 6 months for a CTScan to make sure there is no new growth in the remaining nodules. I thought that the meds wipped out all of them but the doc told me that there will always be some. So we keep an eye on them. I have a lot of fatigue and fevers but am doing okay. You will too. Keep learning and ASK questions! You know you better than anyone else!