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BridgetO

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Everything posted by BridgetO

  1. BridgetO

    Update

    I wish you all the best! I had a VATS lobectomy in 2016, which was pretty easy as major surgery goes. I'm fine now! Focus on hope. Other feelings will arise--they always do!. Don't fight them; just acknowledge them and let them go, and go back to hope.
  2. Hi Luke and welcome! I'm glad you found us. It's good that you had this CT and that you're seeing a lung specialist. Based on what's in your report, you've got some abnormalities in and around your lungs, but without further testing, there's no way to know if you have lung cancer. If a person does have lung cancer, the earlier it's found the easier it is to treat. It's a very scary time you're in and it's normal to be scared. Here's how I would interpret your report. Most nodules found in lungs aren't cancer. They can be infections, inflammation, or scar tissue, for exampleThe 15x9 mm nodule is smallish. "Spiculated" means it spiky or star shaped and nodules of this shape are suspicious for cancer. As the radiologist says, it needs a biopsy. There are several ways to do this, depending on size and location of the nodule. Some can be done with a needle through the chest wall and some with a bronchoscope, a device that goes down your bronchial tube. My nodule couldn't be done that way and had to be biopsied surgically. Those little 3mm nodules are probably too small to biopsy and need to be watched. Lymphadenopathy means something doesn't look right in some of your lymph nodes. Mediastinal are in the mediastinum. the space between the two lungs and hilar are in the area near the middle of the lung where the bronchial tubes and blood vessels go in. They may want to biopsy some of those, too. The rest of your findings probably don't relate to lungs. Of course you're scared! We've all been through this Being a non-smoker reduces your risk of lung cancer, but anybody can get it, smoker or not. Dusty factories could be a factor, but might also be a cause of some other problem in your lungs. No way to know any of this until you have a biopsy. My nodule, which was just a tiny bit smaller than yours, turned out to be cancer. I had a lobectomy (removal or the lower 3rd of my right lung. They took out and biopsied a whole lot of lymph nodes, which weren't cancerous. The surgery was done by VATS (video assisted, done through 3 small incisions) and was pretty easy as far as surgeries go. I didn't need further treatment. My surgery was in 2016 and I've had no evidence of cancer since. Hang in there, Luke. Ask us any questions you may have and let us know how we can support you. Bridget O
  3. Hi Moo, I used the incentive spirometer and also a little piece of equipment that you breathe into that has a flutter valve- can' t remember what you call it. No other rehab. I don't recall having a hard time getting dressed. I think a loose-fitting t-shirt worked. Of course I don't have RA. It might have been difficult to get into something close fitting. I'm not a fan of narcotics either. I think the chest tube was the main reason I used them. If you do end up using some opiods, be sure to regularly use a stool softener and/or laxative to avoid constipation.
  4. I had a VATS lobectomy. My impression is that VATS and RATS are pretty comparable in efficacy, recovery time, etc., and that the choice seems to depend on the surgeon's preference and the availability of the DaVinci equipment. I was discharged the day after the surgery, with my chest tube in place. Discharge with tube in is pretty unusual. I had an ongoing air leak and needed the tube, but was otherwise okay and ready to go home. My tube was attached to a Heimlich valve, which let air and fluid go out but not in, and a drain bag, which I had to keep upright and tote around with me. I had the sucker in for 10 days. The tube itself caused some discomfort, and occasional stabs of pain when I moved in certain ways--I quickly learned how not to move in those ways. My tube was taken out in the ER (on Thanksgiving day!) because it got plugged and the incision where it went in was leaking fluid all over. I still had a little air leak, but they decided it was slight enough that it didn't warrant putting in a new tube. Taking the tube out was,as Tom said, a piece of cake. I also agree with Tom about the wedge pillow. I started out with a pillow with arms, which was more or less OK, when I was sitting up and awake, but sleeping on it gave me a stiff neck. I got a wedge, which was much better. It keeps your body from hips to shoulders in a straight line, which helps with breathing comfort. I used a small pillow on top of the wedge under my head. Lou T has compiled a list of suggestions about surgical recovery, which he or someone else will probably send you. As far as help around the house, you'll need to have someone with you for the first day after discharge. The hospital probably won't let you go home without sombody to be there. The main limit I had was no lifting of anything over, if I recall correctly, about 8 pounds. Also I wasn't allowed to drive until the chest tube was out and I was off opiod pain meds. These two things were related-- once my tube was out I had not much pain and only needed some tylenol. I could do a lot for myself, but I did need help to change the dressings daily on my incisions, since they were in spots hard to reach. I was up and walking around some they day I got home, and a couple of days after that, I walked around the neighborhood with my chest tube and bag hidden under a big raincoat. If you have other questions, feel free to ask.
  5. Hi Chris and welcome from me too. I have nothing to add to what people have already said: terrific you're having a good response to treatment. Keep posting. Bridget O
  6. Hi Moo, My situation was not much different than yours is. I had a gynecologic cancer in 2011 and in 2016, a small nodule was discovered in my right lower lobe. I had a follow up in a few months and iit had grown slightly. At that time I had a PET and nothing lit up. My pulmonologist told me that the nodule didn't have the characteristics of a metastasis, but that it could be a new primary lung cancer. Because of its location it couldn't be biopsied by needle or bronchoscope, nor by wedge, so I agreed to a lobectomy, which was done by VATS (video assisted). It turned out to be an adenocarcinoma (NSCLC- non-small-cell lung cancer) with a diameter of 1.2 cm. It was stage one, and no further treatment was recommended. Since my lobectomy, i've been NED (no evidence of disease). Here are a couple of things I'd suggest in your situation. Slow things down a bit-a few weeks to get more information and feel settled about the treatment plan. Consider seeing a pulmononlogist if you haven't already. Mine was great at explaining what she saw on the CT-- she looked at the actual images and not just the radiologist report. Get a second opinion fro another surgeon. Ask why they (pulmo and surgeon) aren't recommending a biopsy by needle or bronchoscope. That is pretty standard unless (as in my case) there's a reason it can't be done. If you end up needing to have a lobectomy, know that most of us who have had one by VATS or robotic surgery have found that it's fairly easy compared to other major surgeries. If the surgeon is suggesting open surgery (thoracotomy) rather than VATS or robotic, I'd want to hear a very good reason why. Hang in there! you can do this. Ask us whatever questions you have and let us know how we can support you.
  7. Hi Justin, Here are some suggestions: 1. Stop reading those damned internet statistics (this is not the first time you've heard this suggestion, right?).You know they're out of date. 2. Instead, listen to this: The Median isn't the Message, by Stephen J Gould. He was a scientist and a cancer survivor who understood what statistics can and can't tell us. 3. Get a grip and start enjoying your family! Lou is right on this! Stop wasting your one rare and precious life in fear. You'll be doing your family as well as yourself a big favor. 4. If you haven't already, consider cancer counseling and/or see if antidepressants are appropriate for you- I've found both of these helpful.5. 5. Know that we're here for you and vent and rant all you need to! Most, if not on his forum all, have been in the throes of hopelessness at times. Some have passed on. Those of us that are still posting are stlll here! This is proof that HOPE makes sense. My lung cancer was an early stage. However, lung cancer is my third primary cancer. My second was a rare and aggressive stage 3 gynecologic cancer with a "dismal" (my doc's word) prognosis. I continued with aggressive treatment and I've been NED for over 10 years. There were no guarantees for me, but I'm still kicking. Hang in there, Justin. You can do this!
  8. Wow, Minh! It's just one thing after another for you. Hang in there and think of Tom, still with us. I'll be thinking of you next week. Let us know how the surgery goes as soon as you are able.
  9. BridgetO

    6 years

    I'm thrilled that you've had another cancerversary! Keep on going!
  10. BridgetO

    Need advice ...

    Nur, I'm so sorry to hear about your mother's cancer. It sounds like it is very advanced and she is frail. One issue most of us on the forums have is we are in the US and we're only familiar with the US medical system and customs. We know what diagnostic tests and treatments are available here. But we don't know what's available or commonly done in other places, or how expensive treatments are paid for. As Tom notes, in the US a person with a Stage 4 diagnosis would not be treated by surgery. And we don't know what kinds of chemotherapy or radiation are available in Uzbekistan, so some of our suggestions may be of treatments she can't get. My mother died of cancer. She had treatment and then had a recurrence. She had some more chemotherapy but then chose to stop it because the treatment was causing her to become more and more disabled. Near the end of her life she had hospice care which relieved her pain and allowed her to die peacefully. If treatment isn't possible for your mother, hospice, or something like it could be a good option. Here in the US, hospice is available if a person is expected to live less thatn 6 months. Choosing hospice would mean stopping any any treatment that is meant to cure the cancer and focusing on keeping the person pain-free and comfortable. That usually means pain medication but it can also include equipment like a hospital bed, a wheelchair, something to help a person from bed to chair, etc, depending on what the person needs. If the person is at home with family, there is usually a nurse who visits, and someone to help the family know how to best care for the person and what to expect. I wish comfort and peace to your mother, you, and your whole family. Bridget O
  11. Hi Jason, How interesting! I've never heard of flip-flop fungal infection, so I read some articles. I've learned something new!
  12. Congratulations, Tom! i second everything Lisa, Lennie and Lou have said! Yay for you!
  13. Hi Jason and welcome! You've already got some good info from some of our all-stars😊. I have a couple of questions for you. Was the fungal infection identified? Are you getting treatment for it? Just curious, since I have lung scarring probably from valley fever, which is caused by a fungus., It's unclear when I had the infection, since I was never diagnosed with it. Keep in touch. Bridget O
  14. Minh, I'm sorry! to hear that you're having a new problem. Poor you! You have such original problems! I'm thinking of you.
  15. Minh, I'm sorry you're going through all this. Hang in there and know we're all sending positive thoughts and prayers your way.
  16. Can you check with your team at MD Anderson about draining fluids from a "Swiss cheese" lung?
  17. I agree! This is great news! a
  18. It sounds like you're doing great!
  19. Hi Barb and welcome. Tom has given you some great information. Lou's tips (which Tom linked) should be really helpful. I especially recommend getting a wedge pillow. It will help you sleep and breath better after surgery. Will your surgery be VATS (video assisted)?. I had a lobectomy by VATS almost 5 years ago and it was pretty easy, as surgery goes. If you have specific questions, I''ll be happy to answer if I can. Bridget O
  20. I'm glad to hear you're feeling better. Loss is hard and feelngs of grief can come and go for a long time. Bless you for everything you did for your husband.
  21. Hi Crissey and welcome, I had a lower right lobectomy. About 3 months later I took a round trip flight of about 2-1/2 hours each way and had no problems at all. Since then I've had some longer flights, also with no problems. Good idea to check with your doctor. You might consider a shorter trip first, maybe 2 hours rather than 5 or 6, to get an idea of whether you'll have problems.
  22. Happy Durvaversary! I wish you many more.
  23. Yay for you Roz and the Roscopal effect. Thanks for sharing this--I hope others will benefit.
  24. Hi PMD and welcome. I have no experience with durvalumab. My lung cancer was stage 1a and required only surgery. However, I have had 2 other non-lung primary cancers, one of which was stage 3 and aggressive and for that I had chemo and radiation. I *mostly* (but not entirely) agree with the folks who posted above about "alternative' treatments" for cancer. i prefer to think of them as complementary, rather than alternative, since I have used them in addition to, rather than as a replacement for convetional treatment. Through all of my cancer treatment, I've gone to a local clinic where I tconsulted with a naturopath. She knew a lot about cancer and conventional treatment, as well as complementary treatments. I had a lot of acupuntcture (which helped with side effects) as well as some suppolements and Chinese herbs. My experience with conventional medical doctors is that they mostly just say no to anything they don't know anything about. For example, my thoracic surgeon said no to a medication recommended by my naturopath, because he didn't know anything about it. Another example (not related to complementary treatments) was that my medical oncologist for my stage 3 cancer was hesitant to do anything other than treat it as a "regular" cancer, on the grounds that it was a rare type and there were no publshed studies about it and therefore other treatment would not be "evidence based". I got a second opinion from a doctor at our local university hospital, who had clinical experience with this cancer and reommended addtional treatment, which I had. There is little financial incentive to do typical clinical studies on THC and other cannabis derivatives--drug companies aren't going to make a lot of money off of these drugs. Also, it's hard for anyone in the US to do studies of cannabis derivatives because of the ridiculous restrictions the US government has put on them. As a result, uses of THC, etc, are bound to be " not evidence based". So I think sometimes we need to look at complementary therapies, get the most reliable info we can (which is hard} and make up our own minds. I found the oncology pharmacist at my infusion center helpful. He went through my bag of supplements and herbs and found only one to be a problem. It had an animal-derived ingredient which might be raw, and so could be a problem if I developed neutropenia. That sounded like a good reason to me--after all, I gave up sushi, too. BTW, I'm NED on all 3 cancers. I don't know if any of the complementary stuff helped, but seems like it didn't hurt any, Keep us posted. Bridget O
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