Hello warriors! Had my second needle biopsy on 10/30. The first one 3 mo ago was inconclusive, suspicious. The path report came in on 11/03 as an adenocarcinoma. I also had a fiducial marker implanted at the time of the biopsy and on 11/9, I go to a diagnostic center that has the software protocol to be readied for CyberKnife treatments. I'm feeling positive on my decision to have this treatment rather than surgery. I had a consult with a second thoracic surgeon and he was professional, informative and empathetic, unlike the first whom I nicknamed 'Dr. Doorknob' for his lack of people skills. When I left the second surgeon's office, I knew I was making my decision based on the information I was given and my gut feeling and not my personal unease with Dr. Doorknob. I Thank All Of You! You helped me find my path by sharing your experiences!
I was told it would probably take about an hour to 'cradle' me and set up the positioning and then a CT would be done and to wear comfortable clothes. I understand you are fitted with a vest that guides the CK robotic arm. Does anyone know if you can wear anything under the vest? I neglected to ask. The radiology oncologist who makes the treatment plan said she thinks 3-4 sessions and barring any surprises, we could be finished by Thanksgiving, 11/26. I'm anxious to 'get 'er done!'
Written by
dunnellon
To view profiles and participate in discussions please or .
Thank you! The experiences you share helped bring peace to my decision.
Great dunnellon, to go withy your gut, your body talking to you and your mind in agreement, its so important to have confidence in the procedure and the doctor.
Can't advise re the vest but don't hesitate to check with your doc, perhaps shortly you will be sent detail by mail or email.
Hi dunnellon, wishing you well and success with the treatment.
When I had my radiotherapy I had to change into a gown, I don't know why, modesty? which I had to remove prior to the treatment itself. No vest in my case but 4 targeting tattoos used instead, that were placed where reflectors were attached to my chest at the preceding mapping CT scan.
As you probably know I had 5 sessions of stereotactic radiotherapy (they are called fractions in the UK) 36 months ago and I am still in remission with the tumour continuing to shrink and no reoccurrence. Just another 36 months to go to be declared cancer free, I hope.
I certainly do not regret my decision over surgery that had abysmal survival odds or debilitating chemotherapy, I was able to continue working all through the treatment no problem.
2greys ...I do hope my recent radiotherapy is a success too! Only 3.5 weeks since the final one, so still getting some side effects, though not as bad as initially. I had 15 sessions of 8.5 minutes each. They managed to target both lungs primary tumour, and two lymph nodes too. They did say I'd had a lot of radiation, and were pleased that I'd managed to get through them all. Had a difficult final week where I was increasingly unable to walk without a strong arm to hang on to, and felt pretty unwell, but got there!
Terrific team of radiotherapists too! I have a phone appointment with that consultant on 27th, but doubt I'll know much about the degree of success properly for some months yet.
Hope those 36 months pass uneventfully for you, and that you're declared free!
I hope your treatment has been successful as well.
Do not panic if you get a copy of the clinic letter to your GP and it says "Partial Response" to the treatment, every clinic letter I have received since having radiotherapy treatment has said "Partial Response". Why they put that I don't know, probably just to absolve themselves if things don't go well, not exactly nice for the patient to read though.
You will not know for months, the treatment carries on working for a very long time, my tumour is still slowly shrinking today. Your first CT-scan from treatment is really to just assess if there has been any damage caused to the other parts of your lung, do not expect news of how effective the treatment has been just yet.
That's good to know! I won't expect immediate results. My cardiologist said, "Choose your treatment, don't look back. Attitude is half the battle and remember, there is a higher being." I liked that.
Thank you for those good wishes - think we all deserve them in one way or another!
The consultant for the radiotherapy here didn't tell me very much - he totally played down side effects too. Radiotherapists explained more about some effects I was getting - pains in arms and legs, around rib cage etc ...all the radiation. Then the sore narrowed throat, nausea, etc. All helps if we know what to expect. As usual, some people get more severe effects than others.
With the Gamma Knife to the brain lesion in Leeds though, the consultant there (a Dr Paul Hatfield) was brilliant with explanations of what he was about to do and what we could expect in coming months regarding scans. Apparently, the tumour looks to be 'weeping' around the edges on earlier scans, and it's all part of its destruction, and could go on for months. Really helps to be warned about such things.
Still, they've all been very good and thoughtful, ever since the first days under the respiratory team - showed me scans etc. all the way and explained all the tests they were doing such as EBUS, needle biopsies, PET scan, CT scans and MRI. Passing me to oncology, right through to my current two consultants, one of whom is my 'umbrella' consultant, and one that we both like very much. Even the radiotherapists have been absolutely helpful and wonderful.
Thank you 2greys for the good vibes and the info! When the doctor mentioned the vest, she said they need to use the vest, esp. for women. I guess they want to cut down on the jiggles!
Sharing your experience earlier helped me on my path to a decision and I'm very grateful. It means a lot to have this forum to turn to. I'm praying that your next 3 years are as successful as the past 3! Stay safe.
Early last April, I'd had a seizure in the small hours, and I woke up in hospital a day later. They let me go after 3 days due to the virus. The seizure had been caused by a lesion in my brain - spread there from lung cancer (two primaries).
Despite being virtually written off by two doctors during my brief hospital stay, I went on to have chemotherapy administered at home (....dreadful side effects by the 5th one, so it was stopped), and in August my consultant referred me to a specialist unit in St James hospital, Leeds. It's one of two UK units that do the Gamma Knife surgery for brain tumours, and within days we were there at 6.15am.
Brilliant unit, and we were looked after throughout. Private room for my husband and son to wait ...coffee/tea etc whenever they wanted any, and for all I was really nervous, I was given a sedative tablet, and a CT scan, then the consultant proceeded to fix the cage to my head ...didn't feel any discomfort at all as he froze the 4 places in two stages.
I wore loose, comfortable clothes. They went off to plan the treatment session, and less than an hour later, I was fastened to the scanner/gamma knife machine, and for 50 minutes, drifted in and out of sleep while listening to Vivaldi and Massenet.
A lunch of sandwiches, cakes, tea or coffee was served to us, I was given a final check, and we were taken down to the car. Home by 3.30pm. Numbers to call at any time I needed to.
Because it takes 3-6 months to see significant results, I haven't yet had a scan appointment sent (it'll be done here and the results sent to Leeds). I think the first scan was due to be done this month, but due to the virus may be done later as I've had no scan appointment yet. I'm fine, so don't think it would be a problem to delay it.
Wow MacColl, that was quite the rollercoaster you were on! So glad they could help you out with the Gamma Knife! I'm also on a meningioma forum and there is much success reported with GK. Thank you for the information and best wishes to you!
I have never heard of this treatment dunnellon but when I looked it up, it sounds very good and i am sure you have made the right decision. I wish you all the best with your treatment and will be thinking of you on the 26th x
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Organising pneumonia 
Toddler's life-saving vest to be taken away because NHS doesn't fund vital treatment.
Update as the weeks are moving on
Bronchoscopy
Pet Scan lights up.
