I was living well with my indolent cancer but because I was fearful of the new insurance regs, and since it was not very invasive, that I would go ahead and have the prodecure done.
I went into Mayo on Dec 19 and had a microwave ablation done to a 1.3cm ggo. An outpatient procedure.
I was admitted into the hospital and told that even though the correct mfgs specs were used, that the ablation, which was expected to be less than 2 cm turned out to be 6 cm and I had a pneumothorax. I had 2 chest tubes inserted and 2 blood patches, the second one was successful on 12/24 so they sent me home. I did not see the infection from one of the tubes until I got home. .
From 12/24, I had increasing weakness. I developed a fever on 1/12 and saw my GP in town and he was concerned about chest tube site infection and possible pneumonia so I went for a chest xray and he put me on levoquin. The xray showed a pneumothorax 3cm at apex. I called Mayo and they asked me to come, which I did 1/15.
Had CT scan at Mayo which showed the pneumo unchanged but also infected fluid in pleural space.
They did TPA flushes and removed over 1000ccs of fluid. The cultures showed strep. They sent me home on Jan 18 with the pneumo unchanged and a small amount of fluid at base of lung and kept me on levoquin for 2 weeks. I had a chest xray on 1/21 and the pneumo was still there….no change.
I am stronger but have pain in the area of the ablation and I have some SOB on exertion. I am going to Mayo on 2/5 for a CT. I went from being a well person to now not knowing whether this BPF and infection will be my end. Do people ever recover fully from BPF and infection in pleura?
I am sending this to tell Dr West, he was right, I should have left well enough alone. I want to share this with the hope it will help someone else down the line.
Many blessings to all at Grace,
Lembird
Reply # - February 4, 2014, 07:41 AM
Reply To: A Cautionary Tale
Thanks for sharing that, Lembird. I hope that you continue to improve and that this painful lesson becomes a distant memory.
It's a perfect illustration of the point made in the GRACE faq on local treatments for metastatic lung cancer: http://cancergrace.org/cancer-101/2011/01/01/cancer-101-faq-i-have-meta… As Dr. West says, although it is tempting to just get rid of every bit of cancer that can be seen, such interventions are not risk-free.
JimC
Forum moderator
Reply # - February 4, 2014, 01:13 PM
Reply To: A Cautionary Tale
Thanks Jim,
I do hope this just becomes a lesson and a memory so I can get back to my "A" game. Also hope it helps someone else to avoid the very painful lesson.
Be well,
Lembird
Reply # - February 4, 2014, 08:24 PM
Reply To: A Cautionary Tale
I don't see or manage people with bronchopleural fistulas, so I can't say what to expect.
I would have preferred to have been wrong and had you do very well, but I'm glad you can at least help illustrate that I'm not just being unnecessarily cautious recommending to let sleeping dogs lie.
-Dr. West
Reply # - February 5, 2014, 05:10 AM
Reply To: A Cautionary Tale
Thanks Dr West. I will post what I hope will be my recovery as I try to get those dogs to lie back down.
Sincerely,
Lembird
Reply # - February 6, 2014, 09:24 PM
Reply To: A Cautionary Tale
Lembird. . .
Wishing you a super-speedy recovery and hoping that this does become a really bad memory for you. I'm keeping you close. . .
Laya
Reply # - February 7, 2014, 09:55 AM
Reply To: A Cautionary Tale
Thanks so much Laya, I really appreciate your good wishes for a super speedy recovery (I love the sound of that)
Latest update:
I went for a scan at Mayo on Weds and it showed I still have fluid and air in lung but....less.
No fever and have been off antibiotics for a week so this news is really the best I could hope for at this time.
I am walking a lot and as fast as I can to reexpand the lung and keep the scarring to a minimum as this heals. The hope and prayer is that as the ablation zone heals that the fistula will scar closed. No guarantee on that, of course, but the fact that I have less air and fluid is a good sign and good direction and I am so happy with that news.
I know it is a long shot to have this close on its own but I am working hard on it and praying on it and hoping this will close over time without having to face a terrible surgery.
I will post over time to continue to share this experience with Grace for the next person who is deciding whether or not to leave well enough alone.
Mayo will be following me by phone (since I am 4 hours away from the clinic) to document how I am feeling over time but, barring great pain or fever, I will not have another scan until August. My goal is to be back to climbing stairs and running with my doggy by then.
Blessings,
Lembird
Reply # - February 7, 2014, 09:00 PM
Reply To: A Cautionary Tale
Lembird, sorry I've not responded sooner but I want you to know I've kept you close since reading this Tuesday. I'm so glad things seem to be mending and your tenacity to heal yourself is heart warming. If you ever need to work out the lungs in a different way yoga, specifically breathing exercises are excellent.
You are wonderful to write this thread. I've added this thread to my bookmarks so to get the word out a good long time and we'll make good come of it. You're the best,
Janine
Reply # - February 8, 2014, 06:09 AM
Reply To: A Cautionary Tale
Thank you Janine,
I really appreciate you using this information to let people know that some not very invasive treatments can become VERY invasive and even life threatening very quickly when something goes wrong.
I am so happy that some good may come from this experience.
I will post from time to time to keep you informed.
Thank you for all you do.
Lembird
Thanks for the yoga tip....I will try that.
Reply # - March 30, 2014, 07:56 PM
Reply To: A Cautionary Tale
Lembird, I am so sorry you have had such a rough time since you had what should have been a simple procedure. I see you haven't posted in almost 2 months so I thought I would ask you for an update. I'm sorry I didn't respond sooner, but I haven't been on GRACE much either. Know that you are in my heart, and I am "shaking my fists at the universe" for you.
Debra
Reply # - March 31, 2014, 07:33 AM
Reply To: A Cautionary Tale
Debra,
As you know from my other post....I am so very happy to hear from you.
I am doing better , gaining weight in ounces but have gained back 5 of the 8 lbs that I lost during this latest adventure. I had another infection but it responded to antibiotics only and I am still waiting to see my new pulmonologist to see where I am with this. The next scan, which should be on or about the 1st of May, will be telling. If all air and fluid is gone....perhaps this fistula has closed itself.
I am not as active as I was before this but I am getting more and more active every day with less and less pain. Since the initial shock, I am dealing with it ok now and I understand it will be what it will be and I refuse to waste a precious day worrying about it. I am grateful that I am able to get access to wonderful medical care and I trust that this will all work out the way it is supposed to. I guess this disease has made me pragmatic. I know you understand.
Thank you for updating all of us on your condition...it is truly so good to hear from you and, once again, you inspire us all.
I will update after seeing the pulmonologist and I will be looking for updates from you.
All blessings and good positive energy coming your way.
with love,
Lembird
Reply # - May 14, 2014, 11:08 AM
Reply To: A Cautionary Tale
Hi Everyone,
Just want to give you an interim update since I had a CT scan for oncology on this past Monday. I got a little preview of what is going on since my CT for radiology will be in August.
First the great news....all of my innumerable cancer "spots" are stable and the fistula appears to have closed itself since I have no more fluid or air in the lung.
Now the interesting, not so great, news.....since nothing ever seems to go in a straight line with this disease.
It appears that the ablation site has developed into an approx. 4cm cavitary lesion and has what could be dead tissue or fungus inside. I, of course, am hoping and praying it is just dead tissue.
So....the saga continues and I am not out of the woods.... yet. I asked my onc what happens if it is fungus and it doesn't go away by August and she said I would be looking at surgery!
I will keep you informed while I go down this road that never had to be traveled. Still working hard on rehabilitation of the lung and feeling MUCH better although still not totally recovered from my MW ablation adventure.
All good wishes
Lembird
Reply # - May 14, 2014, 01:50 PM
Reply To: A Cautionary Tale
Lembird!
I'm so delighted that you have posted again. I'm very happy that the fistula closed on its own like you hoped it would. And next to NED, STABLE is our favorite word!
As far as the cavitary lesion with fungus, I've had the same thing for months, yet with antibiotics I continue to improve and thrive. No one has mentioned surgery as an option but I've been pretty sick so I'm sure if they didn't even want to do a bronchoscopy, surgery would have been out of the question. Is there not an antifungal they can put you on? I'm reminded of Dr. West's advice to "let sleeping dogs lie." I would have lots of questions and would seek a second opinion if surgery were recommended to me for a cavitary lesion with a fungus ball. Not telling you what to do, just saying what I would do. Perhaps one of the faculty will comment on that one.
I'm so happy that you are continuing to improve. I am keeping you in my thoughts. I know what you mean that good news is often followed by bad, but I think the big picture looks pretty good for both of us. Indolent BAC seems much easier to live with than more aggressive cancers. We continue to be blessed.
Much love,
Debra
Reply # - May 14, 2014, 06:36 PM
Reply To: A Cautionary Tale
Hi Lembird,
It's great to hear from you, and even better that you continue to improve. I don't have the experience with this that Debra has, but I too would exercise caution :wink: before choosing surgery. I'm hoping that this resolves on its own, or possibly with antibiotics; perhaps something to discuss with your doctor.
Again, thanks for keeping your GRACE friends up-to-date!
JimC
Forum moderator
Reply # - May 14, 2014, 07:33 PM
Reply To: A Cautionary Tale
I can only corroborate that this is pretty uncharted territory in your situation -- no real rules, and not much experience to turn to for expectations. I have a similar in a similar situation -- a cavitary lesion with likely fungus inside it, though caused by conventionl chemo and radiation for stage III NSCLC. In this case, I sent him to see a surgeon and an infectious disease specialist, who both suggested against any intervention just yet -- just watch and consider options down the road, especially with uncertainties about how his disease and prognosis will unfold over the coming months.
Not an answer, but just a way of saying "you're not alone, and nobody has a great answer".Perhaps that's just cold comfort.
Good luck.
-Dr. West
Reply # - May 15, 2014, 07:58 AM
Reply To: A Cautionary Tale
Lembird,
So good to hear from you and so happy to hear your news of stable!!!!!! I hope everything else resolves, take care!
Lisa
Reply # - May 15, 2014, 08:20 AM
Reply To: A Cautionary Tale
Debra,
Thanks so much for posting and letting me know that you are not letting this get you down. You are right, we are blessed and I am grateful that I live a pretty "normal" life,,,,,considering.
I am in no hurry to have surgery....especially since I am still recovering from my last medically induced problem. So very happy you are hanging in there. God Bless.
Jim and Lisa,
I hear you loud and clear......I am in no hurry to have surgery so I will ask a lot of questions and get a couple of opinions before I do anything. Thank you for your advice about caution. I didn't use that last time and that is why I am here now. I am getting better although......very slow. Be well.
Dr West,
Thank you for your answer, it does make it easier for me to take a wait and see attitude. Of course, I wish you had a remedy for me but the fact that nobody has a definitive answer as to how to treat this IS an answer. Right now, I will try to get stronger to fight this off and make my body less hospitable to fungal invasion.
Will keep you informed.
Be well,
Lembird
Reply # - May 15, 2014, 09:27 AM
Reply To: A Cautionary Tale
Hi Lembird : )
So good to know you're stable and feeling better all along. Invasion can certainly turn into an out of control spiral. D had surgery for biopsy tissue knowing he couldn't remove complete pancoast tumor. He still has a lot of issue connected to the surgery not to mention the tumor and all the nerve damage from both. But he remains NED almost 2 years since treatment and you can't beat that with all the stuff.
It's so good to hear from everyone, their perspectives and understanding of how the system can work best to our advantage.
I hope you find a course that is easy on the body.
All best,
Janine
Reply # - May 18, 2014, 10:51 AM
Reply To: A Cautionary Tale
Janine,
Thanks so much for your good wishes.....I will keep you informed. Like you said, it is good to hear about everyone's journey with this terrible disease. It really is a physical and mental roller coaster. So happy that D is NED after 2 years, that is a good place to be.
All the best to you also.
Lembird
Reply # - August 9, 2014, 07:04 AM
Reply To: A Cautionary Tale
Hi Friends,
Well, I had my scan this week and my ggo and nodular foci are all either unchanged or not significantly changed since last scan in May.
The cavitary lesion caused by the microwave ablation which was 3.5 x 4 cm is now 2.2 x 3.2 cm and now no longer shows a ball of some sort but rather it now "demonstrates diffuse internal soft tissue attenuation.
Additionally, an inferior-medial consolidation with bronchial dilatation has also improved"
I am scheduled for another scan in 3 months and I am hopeful that no infection, bacterial or fungal, sets in.
I am beginning to get some of my energy back and am walking my dog 2 x per day, riding my bike almost daily and can do 4-5 flights of stairs without too much difficulty. I do not have all of my energy back but find I am able to get most of what I need to accomplish done before getting very tired and requiring 9-10 hours of sleep.
No fever, no coughing up anything, some mild SOB due to my asthma which is limiting but not debilitating.
I had a pulmonary function test which showed normal % saturation and air movement.
All in all, I am cautiously optimistic that I may be headed back to some degree of health.
With love and good wishes to all at GRACE.
Be well.
Lembird
Reply # - August 9, 2014, 08:25 AM
Reply To: A Cautionary Tale
Lembird!!! I'm so glad to hear this.
It sounds like you've got a lot of energy I'm so cautiously optimistic for you!
Janine
Reply # - August 9, 2014, 08:27 AM
Reply To: A Cautionary Tale
Hi Lembird,
Such a terrific update!! Thanks for keeping us up to date, and sending you our best for continued improvement and great scan results!
JimC
Forum moderator
Reply # - August 11, 2014, 12:36 PM
Reply To: A Cautionary Tale
Thanks Janine, Jim and Lisa for sharing my good news with me.
All the best wishes to you and all the wonderful people that work and visit this website.
Be well,
Lembird
Reply # - August 11, 2014, 03:52 PM
Reply To: A Cautionary Tale
Lembird,
I'm sorry I missed your update a couple of days ago, but let me add my congratulations on you doing so well. I'm very happy for you. Hope to hear more good updates!
-Dr. West
Reply # - August 14, 2014, 06:46 AM
Reply To: A Cautionary Tale
Thanks Dr West,
I appreciate your response and interest. I will keep you posted with my, hopefully, good news going forward.
All the best to you,
Lembird
Reply # - August 14, 2014, 04:14 PM
Reply To: A Cautionary Tale
L E M B I R D !!!!!
I am so happy to see that your mystery cavitary lesion is resolving. I was going to suggest a good pulmonary physician be added to your team, as mine has been invaluable. I think of you often.
Much love,
Debra
Reply # - August 16, 2014, 08:28 AM
Reply To: A Cautionary Tale
Hi Debra......so very good to hear from you!
As you can imagine...I am so happy that my latest adventure seems to be going my way.
Funny you should mention getting new pulmonologist....I just got one and he is wonderful.
I am breathing better and he is watching my scans along with my onc at Mayo. He is local for me so I feel comforted by knowing I have him close by.
I think of you also. Please know you are in my thoughts and prayers and I am always sending good karma your way. I fully expect you to shatter the hospice records.
With love and all good wishes,
Lembird