Newly diagnosed... weighing options
I am newly diagnosed (2/7/2022). I just turned 69 on the 21st of February and I want to weigh treatment options and decide for myself what I am and am not willing to do. I have severe arthritis so have been using a rollator (walker with seat and wheels) for some time now. I can't breathe well enough to see my chiropractor for my back and shoulder issues.
I am on the spectrum, with many sensory issues. I've already outlived my bestie, my beloved, many friends. If I am approaching my end, that's fine with me. My biggest concern right now is hoping this doesn't interfere with cataract surgery (April 2022), so I can see well enough to read, write, and crochet. I'm just not excited about chemo, radiation, clinical trials, trying this or that, do everything to extend the number of my days at the expense of the quality of my days. I want to find out if surgery is an option but for insurance, I have to meet with the radiology and chemo folks first.
Because I've had streptococcal pneumonia and a partially collapsed lung for two months, I've already become dependent on others for many little things, and it is bothering me a great deal. Why are we supposed to fight this tooth and nail? Shouldn't it be our choice? I don't even want to tell family or friends yet. My daughter, my primary supporter, is the only one who knows so far.
Hi
. First, let me say happy belated birthday (I was the next day). Second, I'm very sorry to hear about the diagnosis. I believe many here understand exactly what you are saying about wanting to make your own decisions, on your own terms. Your concerns about the various treatments and their impacts is also certainly understandable. What I do want to to stress is that there have been quite a few advances and, depending on the specific type and nature of lung cancer, there may be treatments available that are quite a bit more tolerable than what most people historically think of. For some cancer with specific biomarkers treatment can be in pill form. This article from our contributor Dusty discusses information for the newly diagnosed, including biomarker testing: https://lungcancer.net/living/newly-diagnosed-information. Your doctor should be able to provide additional information, including options given your other medical conditions and personal wishes. Please know that this community is here for you and feel free, if you like, to keep us posted on how you are doing. Best, Richard (LungCancer.net Team) Thank you,
, for the response and the link. Wishing you a belated happy birthday, too! I printed off some questions/topics for our next appointments. I guess I'm skeptical. I am hoping for more of a team approach. When you're a hammer, everything looks like a nail, so I wonder if radiology folks push radiation and chemo folks push chemo and nobody talking about possible surgery. I have the radiation and chemo intro appointments (no treatment, just consultations) on Feb 25 and March 3rd, so I suppose I am jumping the gun.
Thus far, though, staff have not taken my conditions into account -- I have back and knee pain constantly and was slowly uncurling so the Pulmonary tech could get my height, and she grabbed my head like grabbing a cantaloupe and pulled me into position, stretching me up so I measured almost 4'11" when I am 4'10" tall. When positioning for scans, they abruptly yank my legs up for the wedge I'd requested, causing both knee pain spikes and back spasms. Moving slowly causes far less pain. I realize they treat scads of patients, but sheesh -- is this a way to treat a little old lady, especially one who has just painstakingly gotten out of a wheelchair by the scanner or the wall? Between my cataracts and my poor vision, I do not want to give up my glasses until the last moment -- I get disoriented and cannot tell where I am going or what I am doing. I was not fully sedated for my flexible bronchoscopy, and I told the doctor that, but he laughed and said stop talking and told me I wouldn't remember anything. So, weeks later, I am still having flashbacks; I can recall the steps of the procedure, every one of the six specimens he gave to the nurse, and so on. Thank God the pain meds worked. So, yeah, I am a more than a tad skeptical about rosy descriptions of what I might expect with newer treatments and so on, and whether my choices will be honored, or if I can get biomarker testing and such. And this is a world-class university cancer center 🙄 The scanner bed was high -- but they said, "Hop up." Do you think I look like I can hop anywhere? I asked for a step or a stool. Nope. I don't think they are picking on me; I just fail to comprehend why they treat any patients this disrespectfully. One nurse was outstanding, and I intend to write her a Thank You note.
I do like this site and expect to be exploring it more as time goes on, but I don't know how often I will do so. The resources look very good.Do you find that when you go to appointments with your wife, the staff talk to you over your wife's head? I needed the restroom after the Pulmonary Function Test, and the tech asked my daughter if I can manage the restroom by myself. My daughter glared at her, then told her yes, she just needs to be wheeled in and can reach the bars, etc. I had spoken during the test, so it's not as though I were non-verbal. On the spectrum, yes, but quite verbal -- more verbose, lol.
I am new to the wheelchair. I have used a rollator -- walker with wheels and a seat -- for about 2 years, since my cane was no longer sufficient. However, with the extreme shortness of breath after minimal exertion, it simply is not practical, not manageable, for these medical appointments, so we've utilized the wheelchairs at the various medical clinics. The rollator simply isn't enough support, except in my own place, and it's awkward in my tiny apartment. I suppose pretty soon, we will need to find out how I can get my own basic wheelchair.Hi
. I do know what you mean about people talking past the person in the wheelchair and speaking to the companion instead. Luckily, we really have not experienced that with Kelly's doctors. Part of this may be because once in a while Kelly has to go on her own, so they have had to deal with her directly. You mention the issues with other mobility devices leading to using the wheelchair for appointments. Kelly uses a motorized wheelchair most of the time. Due to the damage from the juvenile idiopathic arthritis, she cannot push a wheelchair herself. The motorized chair, however, opens up the world to her. Hoping your chair gives you better mobility. Please feel free to keep us posted on how you are doing. Best, Richard (LungCancer.net Team)
I see Richard gave you a lot of useful information. I'd like to also wish you a (belated) Happy Birthday! It sounds like you feel your doctors are not working as a team and communicating on your behalf. May I ask if you are being treated at a Comprehensive Cancer Center or a local regional hospital? Perhaps a second opinion at a Cancer Center if possible would be worth it. I am attaching a link below to an article by our Editorial Team that I hope you find helpful. Please feel free to follow up with us, we are here to support each other. Warmly, Alisa, LungCancer.net Team
https://lungcancer.net/clinical/early-palliative-care-survivalHi,
. I am being treated at a Comprehensive Cancer Center. However, I am transitioning there from their outpatient clinics... my primary care doctor in the Family Practice Clinic and the pulmonologist from the Pulmonary Clinic, under the umbrella of the ___ Medical Center (I don't want to give away the location by using the name). So far, only my PET scan last week was at the main Cancer Center Building. Pulmonary has been in the Brain & Spine Building. My low-dose lung cancer CT scans have been at another hospital within their system. My appt with the radiology oncologist tomorrow is in the Cancer Center tower; next week the Medical Oncology appt is in the Brain & Spine building. It's a massive campus. We don't drive, so it's also a total pain in the behind. I am considering a 2nd opinion at another medical system that offers CyberKnife treatment.
My daughter has gone with me for everything except my PET scan, when she wouldn't have been allowed in anyway. She is a great advocate for me and takes notes for us. Normally, I take notes, but this is so unsettling, it's easier to let her handle these. She has tried to describe and emphasize the multiple issues. After a couple of positioning issues (one made the pain so severe, it kept me up nearly three nights before subsiding), I was really anxious about my last low-dose scan, and my daughter was reluctant to let the tech take me from the waiting room solo, just to help me get into the scanner, but the tech said she understood and would be gentle. Indeed, she was.
With my Pulmonary Function Test, the tech got us from the waiting room, and paused in a niche for height and weight, and yanked me so abruptly, neither my daughter nor I had time to intervene. I thought my daughter would take a swing at the woman. I was trying my darnedest to cooperate with the testing, but having trouble decoding what the tech wanted, as she rattled off 4-5 steps rapidly, and I have sensory issues. My daughter tried to explain; the tech had ice water in her veins and apparently never had an autistic/Aspergers patient before. She simply rattled off the same steps rapidly. I wanted to scream, cry, or go back to the PFT lady who did my last test several years ago, because she had walked me through step by step, and put the nose clip on my nose. I can't find my nose except by trial and error or with a mirror. My daughter put the nose clip on me because this tech just handed it to me. I panicked during one step and my daughter jumped up to help me but the tech body-blocked her. The tech wanted me to mimic her mouth -- I cannot mimic facial expressions. And so on. I was in such a state, I couldn't get back in the car right away. My daughter wheeled me to the hospital gift shop, got me a lovely journal to write about our journey, and a keychain with an angel in an oval frame. I was gulping Diet Coke and trying to regain my senses. My daughter is a HUGE blessing and will be with me every step of the way, as much as she is permitted. I kept apologizing, but my daughter knows I cannot control my atypical sensory processing. Heck, I hemorrhaged giving birth, and apologized over and over, even though my veins were collapsing, I had no blood pressure, and it was wild. I was in a Home-Like Birth Center and felt bad about bleeding on the carpeting. 🙄 Sorry, side-tracked. I'm constantly apologizing, even to the chair that has broken my little toe half a dozen times. (The chair leg is bubble-wrapped now.)
Thank you for the link. I printed the article, to take with us, so we cover all the bases with our questions. Thank you all for your encouragement!So glad to hear you are considering a second opinion at a Comprehensive Cancer Center. I ended up going to three Cancer Centers in NYC, 2 agreed on the same protocol, one wanted a trial which I didn't chose as there was already a standard of care in place, so I went with one of the two hospitals that agreed with the standard of care.
I'm a single mom and my twin boys were 10 when I was diagnosed, so I did it alone. It's great you have your daughter with you and she certainly does seem to be a protective advocate! Please know we are not only here for you, but your daughter as well. Will be thinking of you and looking for updates! <3 Alisa
