LouT
-
Posts
1,927 -
Joined
-
Last visited
-
Days Won
141
Content Type
Downloads
Store
Profiles
Forums
Gallery
Blogs
Events
Posts posted by LouT
-
-
-
-
Welcome to our forums.
Wow, you really did have a long, hot summer, didn't you. Assuming your lymph nodes come back clean it is unlikely that any adjuvant treatment would be given. I too had a LR Lobectomy in May 2019 and all scans since that time have been NED (No Evidence of Disease). I pray you have the same results. I'm also so sorry about your wife's accident. What a terrible fall it must have been. Hopefully her healing will be swift (as can be) and complete.Lou
-
-
Arisa,
You'll really need to see what steps the doctor believes you should take now. It is possible for benign nodules to grow and even shrink over time. The following is from an article by the Cleveland Clinic, regarding benign nodules that can be found here:
Compared to malignant tumors, benign lung tumors:
- Aren’t cancerous, so won’t spread to other parts of the body.
- Grow slowly, or might even stop growing or shrink.
- Aren’t usually life-threatening.
- Usually do not need to be removed.
- Can expand and push against nearby tissues but will not invade, destroy, or replace other tissues.
If the doctors are concerned they will perform additional tests (i.e., PET Scan, biopsy, etc). The biopsy can be done in a number of ways, but is considered the definitive test as to whether a growth is cancerous or not. At that point a decision can be made as to any next steps. At this point please stay focused on the fact that most nodules are not cancerous. If you find out it is then there are effective treatments as lung cancer it not the automatic death sentence it once was. Please keep us updated on your conversation with the doctor.
Lou
-
Hi Mary Ann,
Sorry you need to be here, but glad you found us.
I was diagnosed with NSCL in March of 2019 at Stage 1a. In May of that year I had a lower-right lobectomy and no adjuvant treatment. Since that time I have had numerous scans and recently (August) I had my 4-year scans and continue to be NED (No Evidence of Disease). I live my life fully, continue to work out six days a week and am grateful for each and every day I've lived. I'm aware that this is a disease of high recurrence, but will continue to live as long as I'm able to.One thing that helped me so much on this journey is the wonderful people I met since coming to Lungevity. They are a great group of folks who share their "knowledge gained by experience" and are the best support I've known. I hope you'll stick around, share a bit more about yourself and ask any questions that you may have. There is much I can share with you but I'll wait until I understand better what you may need before I do.
Lou
-
Lisa,
Thanks for the additional information. You are doing the right thing in advocating for yourself. We need to be active in our treatment plans. You mention the difficulty in waiting during the diagnostic process. If you read other posts you'll see that you have lots of company on that point (including me). The anxiety is perfectly normal, but seems to reduce once we get a treatment plan.
One thing I've heard people find useful when taking chemo/radiation treatments is to have a "palliative" specialist added to their medical team. This person can work with the patient and doctor to help reduce and address side-effects sometimes before they occur. They have a lot of knowledge of additions to treatment that ease or eliminate them. Please speak to your lead doctor about this and get their opinion. For my part I've heard enough to know that if I do go through chemo I'd look for that support.And yes, Dr. Google is contradictory and depressing. I'd rather hear from my Oncologist than any webpage.
Lou
-
Hi Lisa,
Welcome to the club nobody wants to be a member of. My treatment for LC was surgical so I cannot answer your specific questions, but I'm sure others will be along shortly to help with those for you. In the meantime I'd like to share a few things with you that are pretty universal.
- Please take some time to read "10 Steps to Surviving Lung Cancer; from a Survivor". It was written by someone who was diagnosed at Stage 3 then progressed to Stage 4. This person had many recurrences and treatment and after 18 years was declared "Cured". You will likely hear from him as well. In the meantime these steps are very helpful as you begin this difficult journey.
- There is a section called "Lung Cancer 101". It has a lot of information on every step of the journey including diagnosis, treatment, follow up, and much more.
- Finally, stay away from Dr. Google. The survival stats they have are based on 5-year averages and don't show the full impact of newer treatments nor does it take into account the individual situation that goes along with every person afflicted.
You're not alone anymore so please hang in there and know that we will be here. BTW, I've only been to Asheville twice, but I really enjoyed it.
Lou
-
-
Hi Karen,
Sorry you need to be here, but glad you found us. After reading your post I did some research on ACC (as I'm sure you have) and it seems to be unique in many ways. I'll be looking to see which members respond with their experience of this illness and in the meantime I'd like to share a few bits of information with you.
- From my readings on ACC, surgery and radiation are the treatments used. Please take a look at "Treatment Options for Lung Cancer" it covers the treatments most used for this form of cancer as well as including information on mutations.
- We have a section specific to "EGFR" so you can hear from folks deal with that mutation and it can be found here.
I'll be watching to see if others have faced this rare type of cancer and hope that you'll keep us updated on your journey. This is a wonderful group of survivors and you'll find great support here.
Lou
-
-
-
Hi Beth,
Sorry you need to be here, but glad you found us. Sometimes the diagnostic process for this disease alone can make one crazy. It needs to be exacting, definitive, and accurate. I can tell you know that while CT and PET Scans have a place in diagnosis the definitive diagnosis is made via a biopsy. So shadows, nodules, and other abnormalities could be indicative of cancer the biopsy is the only definitive tool to determine malignancy, and other factors (i.e., genetic markers). Please take a look at "Navigating Your Diagnosis" and you'll see the difference between screening, markers, and definitive diagnosis. You need to get to the biopsy stage for a true diagnosis. Along with that you also want to know what genetic markers may be impacting the findings. Once you have that data settled you will begin to look at what treatments are available to help your Grandmother. So while it may be possible or even probable that it is cancer we don't pull the trigger on anything until it's been diagnosed.
I'm not fully familiar with the UK health system but others here are and I'm sure that you'll hear from them soon. In the meantime please keep us updated and ask any other questions you may have.Lou
-
Sally,
Sorry to hear about your test results. Please keep us updated on how the treatment is going. As you see from Tom's post, this is a "high-recurrence disease" and it can involve many battles. I hate that it is like that, but my hate doesn't change its nature. You (as well as June) are in my prayers.
Lou
-
Everybody and Marilyn,
Thanks for the kind words. I'm blessed and grateful to be here and it's my honor to be able to support my brothers and sisters.
Marilyn, please keep us updated on your scans. Know that there are prayers and kind thoughts going up for you. You are not alone.Lou
- Scruboak, Tom Galli and Marilyn Raven
-
3
-
I went for my 4-year CT Scan this morning and got the following result two hours later: "Impression: Stable exam without evidence of local tumor recurrence or thoracic metastasis." Needless to say l'm rid of my "scanziety for 2023". I meet with the Oncologist tomorrow, but now it can be just a friendly chat.
Lou -
Welcome to our forums Mscott and sorry you need to be here. I know you'll be hearing from others who have had similar experience and treatments soon, but I wanted to say "hi" and share some information with you. In my case my treatment was surgical without adjuvant chemo so I can't speak to the treatment from experience but here is some info that may help you on your journey:
- Learning and understanding this disease, diagnosis and treatments is an important element of survival. You can find our "Lung Cancer 101" here.
- Please read "10 Steps to Surviving Lung Cancer; From a Survivor" it was written by a member first diagnosed at Stage 3 then Stage 4 Lung Cancer over 18 years ago.
- We also have a forum for "US Veterans" where you can discuss issues specific to vets like yourself (and before I go on, Thank You for your service).
- There is a forum that covers "Chemotherapy" and that may also help you in better understanding those treatments.
Please stick around, there is a lot of experience, knowledge, and support here.
Lou
-
-
-
Elki,
I'm sorry to hear your news. Hearing our diagnosis is always a terrible, and lonely set of emotions. My heart goes out to you. The call others have made for hope is a good one. Hope gives us a chance to live in the present with a better outlook for the future. Your nurse may have completed a form as part of a standard operating procedure. My wife recently passed away and she was on hospice for over 11 months. When she was put on she was given "24 hours to no more than a few days" but she went on for 11+ months. So, prognosis are often wrong and can be quite off base in their assumptions. So, hope is a good choice to follow here. If the day comes when you have to make tough decisions regarding your care, you will find strength you didn't know you had. I hope you have a strong support group around you. As a two-time cancer survivor I can tell you it makes a big difference. And of course, you have all of us here to listen and help in any way we can.
Lou
-
-
I'm sorry you need to be here, but glad you found our forums. The lung cancer diagnostic process can seem like it goes on forever, but it's necessary in order to not only determine if the issue is LC but also to determine the type and the best form of treatment. At this point your husband's doctors have not made a definitive diagnosis. Regardless of outcome you may get some benefit taking a look at "Navigating Your Diagnosis". It will help you to understand the processes you are experiencing and perhaps even help you to ask better questions of your husband's medical team.
Please update us when you hear more. If your husband does need our support just know that we're here and ready to help.
Lou
-
RJN has given you good advice. Of course lung cancer can occur along with chest pain, but often it doesn't. The only real tests for lung cancer are CT Scan, PET Scan, and (most importantly) a biopsy. If no growths are found in the scans then it is likely that your symptoms are caused by something other than lung cancer. If you'd like to learn more about the diagnostic process for lung cancer you can look here.
Good luck with your testing. My advice is similar to RJN's; quit smoking, ask your doctor about your fears, get the necessary test to determine why you are suffering the symptoms you are.
Lou
-
Jill,
Stable is a good thing. This is very good news, congratulation! Enjoy the time and a three-month schedule cuts down the amount of scanziety you have to face.
Lou
- LeeLee1908 and Tom Galli
-
2
Brain Mets, Gamma Knife, more chemo...
in MEMBER UPDATES
Posted
June,
I've had no experience with chemo-based therapies so I can't give any information regarding that aspect of your post. But I wanted to say that I'm sorry to hear about progression, and happy to hear that the Gamma Knife procedure went well. I'll be watching your updates and you'll also be in my prayers.
Lou