ColleenRae

Thank you for sharing your story, Lisa...

Tom, Not sure how I missed this one, but thank you for this and ALL of your posts. I honestly don't know what we'd do without you here! I'm having a particularly tough morning and read this - it helps. Big cyber hug for you. Thank you.

Thank you for sharing this, Rose. I am sorry you are experiencing this side effect. Both my surgeon and a second radiation oncologist I consulted with advised that SBRT will definitely change the appearance of future CT's (due to scar tissue from radiation) and that readings will need to be done by someone qualified and with the necessary skill to distinguish between a "mass" / concerning nodule and scar tissue. I was also advised that, yes, a side effect of radiation can impact the quality of one's breathing capacity (which is one reason why we're delaying radiation tx for a small slow-growing nodule; I've already lost some lung capacity from a RUL lobectomy). Both doctors said radiation can lead to chronic radiation pneumonitis. Was the COPD diagnosed AFTER the radiation? Did you have any shortness of breath or cough prior to radiation? I'm not sure if COPD is related to the radiation tx's. Maybe the radiation tx's aggravated the COPD? My first thought would be the unfortunate side effect of radiation pneumonitis. Hopefully someone else can share regarding their experience with this. There is another category here on the site regarding radiation... Have you posted anything there? Hang in there... I'm really sorry to hear this and hope that you will find the right treatment to reduce if not eliminate the breathing issues you are having. I do hope it improves for you. Please keep us posted.

Thanks for the update and info Pattymac. You're giving me hope (and a bit more courage) as I look forward to doing this myself in the future. I'm glad to hear the side effects have been minimal for you. Good to hear what your RO has to say as well re: chances for a full recovery. Two down; one to go. You've got this! I hope this will take care of this as well for you. I felt so bad when I read about your father - far too young to have left this world. It is amazing how treatments have changed since his passing. You take care as well. Good luck tomorrow. Thinking of you! Colleen

So glad it went well Pattymac! What a trooper you've been! Thank you for letting us know. I, personally, appreciate this as I will be heading in this direction in the future. Happy to hear no side effects, other than fatigue... maybe that is from the emotional anticipation preceding the treatment as well... Good luck with the remaining two tx's. Will look forward to hearing more from you and keeping fingers crossed they blow that nodule away!

Will be thinking of you and wishing you the best, Pattymac. Hope all goes well; I believe it will. We look forward to hearing how it goes...! Colleen

Congratulations! Very encouraging! I can easily imagine you felt stunned...! Very happy for you.

Congratulations! Thanks to YOU for sharing your progress over the years... It gives the rest of us a lot of hope! As a WA native / resident, I heard the Spokane area has cyberknife available. Not sure if that is where you have been treated, but glad to know it is available in eastern WA. Congrats again on your remission! Wishing you many more years of news like this!

Sheryl, I think it's amazing that you could even write an update this soon... That, to me, is encouraging in and of itself! I still think it's weird that part of my lung is gone (2 yrs since lobectomy)! I think the positive points that Babs pointed out pre-surgery are good to hang onto. Keeping you in my thoughts and hope you continue to do well each day.

Excellent news, Lisa! Very happy to hear this outcome. Will be sending positive thoughts your way for your surgery

Thank you, Tom & Teri. Your support helps me even more. I have learned so much from both of you since discovering Lungevity two years ago.

Just an update... I had my second consult with a Radiation Oncologist in Seattle - same hospital network where I had my lobectomy in 2018. I am so glad I got a second opinion. Loved the R.O. I spoke with. The second sentence out of his mouth was that he was really surprised that our local cancer center was wanting to treat this suspicious spot so soon. He actually laughed and said how tiny it was. He did not talk at me - he talked with me. He did not dictate what the course of action would be but rather what route he believes is warranted - as long as I am comfortable with the plan. In a nutshell - He agrees with my surgeon that this can wait. They do not want to over treat. He is very comfortable in waiting another 12 months for my next CT scan and stressed this is not life threatening. He said the bigger risk is in a recurrence in the right lung where I had my lobectomy, and scans have fortunately been showing NED. In 12 months, we'll see what changes have taken place. He said I will likely need to treat this with radiation, but they'd like to hold off for as long as possible. I will likely require fiducile markers. He will treat it with their Cyberknife equipment, probably 3x over a 3 day period. I asked him why my local clinic told me 5 sessions over 2 weeks (and the local clinic told me Cyberknife would not work as well; but they don't have Cyberknife)... He was quite blunt and said "Because they can get the maximum revenue by scheduling five treatments". That summed up a lot for me. He also said he has seen three patients from my city in the past week (who are not going to our local cancer clinic for treatment). I told him how I received a call last week from the nurse navigator from our local cancer clinic, "reminding" me that I have cancer and being very pushy about my scheduling and starting my radiation treatments... I was really taken aback by that call. Left me angry and in tears. I did not need to be "reminded" that I had/have cancer. I felt threatened and bullied because I said I wanted a second opinion. After that phone call I had no desire to seek medical care for this locally. I am very grateful I can still access care in Seattle. The Seattle R.O. did not sugarcoat anything for me. He would not use the word "cure" (another point in my book!) either. We did talk about the likely possibility of treating lung cancer long term with spot welding treatments. He was optimistic that there may be new treatments in the not so distant future. What he helped instill in me was that they will not over treat; they will continue to watch and assess in order to help maintain my breathing and quality of life. I did not feel like this was a death sentence nor did I feel alone in this. He will let my surgeon know what we discussed and said he would like BOTH of them to follow me at this point. Am I nervous about waiting? Heck yes... especially when life has revolved around CT scans every few months for the past four years. To go one year will require a mindset adjustment. I'd like to have a year off from this, if possible, and even live a little bit in denial if I can I know there are no guarantees and this can all change, but I felt very grateful today. I know I will never be "cured" but there is also a very good chance that I might be able to live many more years with this. I am very glad I got a second opinion. It helps enormously to "connect" with your doctors.

"I really HATE how insurance dictates our care and what we can have done." Could not agree more. So sorry you are having to go through this when you need to concentrate on keeping your immune system up and being well-rested prior to surgery. I agree with all of the advice you have received here. I have only had CT scans, tele-med visits/consults and a recent thyroid ultrasound, but no hospital procedures. I hope this can be resolved for you quickly and in your favor.

Thank you for the update Barbara... I can "hear" your stress, but as others have said - You really can do this. You can get through the procedure and you can quit smoking. We are all here to support you. Sounds like your husband will as well since he's already taken that big step! One thing that worked for me (in addition to a firm mindset) was to breathe deeply whenever I thought I wanted a cigarette. I would just stop and take several deep breaths and it would relax me. It was actually very similar to what I used to do with a cigarette / why I smoked to begin with. The only thing missing was the actual cigarette. Try cutting a straw down in size and take a "puff" on it instead of a cigarette. Maybe the action of holding the straw alone will help. I would not focus too much on what the nurse told you about the chest tube. After-all, she did say pain medication will be given! Seriously - things were a real blur those first few days for me. I just remember waking up after the procedure and seeing my son sitting in the corner of my hospital room and I was just so grateful... that was the only, really important thing that mattered to me. My biggest fear was anesthesia or that something would go wrong with the surgery and I would never see him again. The rest of the stuff after surgery (blood work, x-rays, chest tube removal, etc.) just came and went and left no traumatic memories. I had my lobectomy without a 100% guarantee that the lobe had a cancerous nodule, so it was a gamble in some ways. It was cancer and, surprisingly, I was grateful. Grateful that it was cancer so that I didn't have it removed for no valid reason. Grateful that it had been caught early. After that - nothing else really mattered other than I was happy to be alive. I just wanted to walk and get back home as soon as possible. Save your energy for that! I am not good at following this myself - but nevertheless - remember: The only thing we have to fear is fear itself. That can be applied toward chest tubes and giving up that last cigarette! I am curious as to how you are going to be able to drive yourself home after four days in the hospital??? I have a feeling you've been taking care of others... Please enlist help from others if you can.

Barbara... Just checking in! Sorry it's been a few days; dealing with some issues here at home but have not forgotten you. I'm not sure where you are in this process right now... You had mentioned you were going to get blood drawn - did that take place? How did it go? On August 16th you wrote: "Next week I'm going for a Wedgectomy (is that the right word?) with the possibility of a Lobectomy depending on the results after they take the first chunk out." I'm afraid I might have missed your date for this if it took place last week... If so, I am very sorry! When you get a chance, can you give us an update on how you are doing? Did you have any procedure(s) yet? How did your blood draw go? Wishing you the best! Colleen