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Just starting - CT scan revealed 2.2 cm mass


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A pain in my upper arm led to an MRI when revealed a "spot". A subsequent CT scan revealed a 2.2 mass with possible spread through lymph nodes to upper arm.

Initial visit with oncologist this Tuesday (Jan 25) and painfully curious:  What to expect?

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Wendell,

What to expect? First a clarifying question: is your cited mass 2.2 mm or 2.2 cm? I'll assume it is the latter for the purposes of my answer.

Here's your diagnosis drill. First, your doctors will want a biopsy of the identified mass. If it is 2.2 cm, then and depending on positioning, then a needle biopsy would likely be the method. There are other methods. I've had both flexible and rigid bronchoscopes used to examine and retrieve biopsy samples. There might be two paths of bronchoscope entry: through the trachea and into a bronchus for a mass near the bronchus or bronchus stems, or through a small incision at the base of the neck to sample lymph nodes. Here is some information on biopsies for lung nodules or tumors. In your reading, you will note surgical methods for obtaining biopsies (Thoracoscopy/VATS) but with involved lymph nodes, a surgical biopsy is normally not required.

Doctors presume (and data supports) that if either the mass or a lymph node is sampled and found to be cancer, the same type of cancer will be presumed to present in both locations. Learning the type of cancer is vital because it dictates treatment. Here is information on lung cancer types. Additionally, biopsied material will likely be sent for further laboratory testing to determine biomarker presence. Some cancer displays biomarkers that allow precision medicine like targeted therapy and or immunotherapy to be administered. These can be given alone or in combination with conventional chemotherapy. Targeted therapy and immunotherapy are game changers in lung cancer treatment and have really moved the survival curve.

Next, lung cancer stage will be ascertained.Your CT result is suggestive of your stage. But, doctors would likely want more certainty in staging your cancer so several more scans will likely be in your immediate future. These are a PET scan, and a scan to clear the brain. Here is further information on these scans (PET and MRI). The reason your cancer is staged is to determine if you might benefit from surgical removal of your mass and lymph nodes. Surgery is our most effective curative treatment. If you stage at I, II or perhaps IIIA, then surgery might be a possibility.

As an alternative to surgery and as a compliment to chemotherapy, medical radiation may be used to "fry" your mass and lymph nodes. Radiation could be used concurrent with chemotherapy if surgery is not advised or as an alternate to surgery. It is very effective. A form of precision radiation called CyberKnife saved my life. Here is information on medical radiation used to treat lung cancer.

Reading all my suggested links is very important. Lung cancer is complicated and you need to get acquainted with its vocabulary so you can ask your doctor "what about this, or that." Knowledge is power that leads to good treatment outcomes so invest some time learning and ask question here when you don't understand information in the links or if you have questions after a doctor consultation. I've lived 18 years after diagnosis and had every type of treatment for the disease but immunotherapy. I survived 5 recurrences and my outcome suggests that if I can live, so can you! These tips may be of use to you at this juncture.

Stay the course.

Tom

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Wendell,

Tom has given you multiple doctor visits worth of information, please make sure to read all the referenced  material he suggested.  This is your health and your journey.  We can provide support and information, but at the end of the day you are driving the car through your journey.  We look forward to hearing more from you in the future and adding anything we can to help you out.

Lou

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*Many* thanks for your responses. Tom: your references will be incredibly helpful as this journey begins. 
While searching forums for help, I noticed - several times - that hope and peace are constant.
But a warning: the first several months can be a roller coaster of emotions.

I'm very grateful for 1) a supportive wife 2) incredible friends 3) resources like this forum.
Y'all have provided me a great start for this beginning,

Regards
Wendell Baskin

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Welcome, Wendell - I am sorry you are here, but this forum will most definitely help you. I am a relatively recent addition and it has been so valuable to me over the past six months. For me, the first two months were the toughest, waiting for scans and bronchoscopy and then what felt like forever before finding out which treatment plan was recommended. In my case, I was put on immunotherapy and have seen significant shrinkage of my three lesions, and now to give it an extra go I have just started radiotherapy. So far, the actual treatment has been fine, and I find it easier than the initial waiting and feeling positive and hopeful. So try to stay busy during the next months to keep your mind on other things as the waiting can be really draining.

Hoping for the best, Rikke

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Thank you, Rikke. Even though I'm just starting, I already sense the next few months may be surprisingly difficult.
I know my path will differ, but I do find comfort your treatment (so far) is easier than expected.
For now, I only know that I don't have any expectations - but lots of hope.

Regards
Wendell 

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Hi Wendell,

I've spent these past 11 months periodically raising my head up above all the details and experiences of treatment to find myself thinking, "Wait, I have lung cancer?"  I never smoked and am physically fit; coming to terms with the simple fact that I even have lung cancer has been a big part of my journey. 

Once you know your type of cancer, its stage, and any other details (e.g., biomarkers, if that's relevant to your cancer) your learning can enter a new phase. Until type and stage are determined, it's just a waiting game.

Take notes during your meeting with the oncologist. Make sure someone is with you to do that-- the information came at me like a tsunami. Even now, my husband hears things I don't.

Once I had a diagnosis, my case went to a tumor board. A tumor board is comprised of all the "-ologists" my oncologist likes to say, and they will come to consensus on a patient's best path moving forward. You might ask your oncologist what the steps will be in determining your path. 

I found it important to understand who I should call with concerns about symptoms (of which I had few) or questions that seem so basic as to be kind of silly (where do I park?) Some places have what is called a Nurse Navigator who can help you with these kind of basics. You may want to ask what kinds of support services are available. There are often oncology social workers available who can help you untangle your feelings about all of this, and your wife and family may find that helpful, too, especially in the early weeks where it seems all you are doing is waiting. 

Hang in. This is a good place to wait. 

Karen

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Thanks, Karen. Biopsy today (Feb 1) w/ visit w/ oncologist next Tues n(Feb 8), By that time I know many missing pieces and possibly any treatments.,

I *do* know NSCLC

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Wendell,

We all look forward to hear about your results.  Please make sure you ask questions of your doctor on any points you may question.  You can even write some down before the visit if you need to.  These visits can be tense times for us and I hated when I used to leave the office and have questions in my head that were unanswered.

Lou

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I'm grateful for the many positive comments. Many individuals in these forums are rightfully concerned. Being a newbie to this "club" I'm trying to look up.
Recent biopsy confirmed stage IV squamous cell. 1st treatment begins next week with Keytruda, Padclitaxel, and Carboplatin.
1st PETscan yesterday (kinda anxious about the results). My oncologist and her MP appear to be optimistic but I suspect that's their default state.

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.. kinda crazy but I'm hoping for some immediate sign - maybe less pain in my shoulder (a large mass is in the shoulder)>

Many Thanks to everyone ---- simply typing some quick thoughts is therapeutic 

 

 

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If it is any encouragement, my fairly minor pre-treatment symptoms (shortness of breath, cough, fatigue) all went within weeks of my first Keytruda treatment. My doc says many of his patients feel better quite quickly.

Crossing my fingers for your PET!

Rikke

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Hi Wendell - 

I see you've received great information already so I don't have anything to add to it. I will tell you that this forum was huge in helping me get through all of the firsts - chemo, radiation, scans, etc. Your wife may be interested in the caregiver discussions. This is the time for you and your wife to lean on us - we've walked in your shoes and will be here to answer your questions. 

Let us know how your first treatment goes.

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On 2/10/2022 at 6:41 PM, Wendell said:

.. kinda crazy but I'm hoping for some immediate sign - maybe less pain in my shoulder (a large mass is in the shoulder)>

Many Thanks to everyone ---- simply typing some quick thoughts is therapeutic 

 

 

Hi Wendall,

Welcome! So sorry you are going through this, but hopefully you will find the forums useful. I’m also a relatively new recruit. I was diagnosed in December with NSCLC after an MRI for shoulder pain showed a primary tumour in my lung, and metastasis to my scapular. I started chemo 3 weeks ago (I have my second round on Monday). It’s not crazy at all to hope for an immediate sign. If it’s any help at all, I’ve been on a cocktail of paracetamol, codeine and naproxen since about July/August for the pain in my shoulder. But about a week into chemo, I came off all of them and the pain had almost entirely gone. I’m hoping that’s a good sign!!! And I hope you have a similar experience!

All the best with starting your treatment!

Gini x

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Again, many thanks for everyone's comments. My first infusion is Wed - Feb 16. Keytruda is among the products, I read some reviews on drugs.com, and most are not positive. I left a msg w/ physician but no response yet. Can anyone provide some comments?  

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I don't have experience with Keytruda, but I have been on some other stuff that was gnarly for me. I learned as much as I could, and then hoped for the best.

If you are going to research, make sure you use reputable sites. My doc gave me tons of reading about drugs, all from chemocare.com. That may be a helpful place to get some information. 

Hang on,

Karen

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Hi Wendell,

I have had four rounds of Keytruda myself, and it has been quite easy (and more importantly, my cancer lesions have reduced by 50% already). I have had a few issues with achey joints, but far from unbearable. I am also in a bunch of FB groups for people on immunotherapy, and overall Keytruda seems to be well tolerated by the vast majority - itching, tummy issues and fatigue seems to be the most common problems, and ofte shorter term. Compared to what people go through with chemotherapy the side effects are quite mild. Having said that, the main issue with Keytruda is that it is relatively new and as it Impacts the immune system, people are affected very differently. So it is critical to note ALL symptoms and discuss with your doctor. Also read your test results and ask questions as you go. For example, so of my thyroid numbers are a bit on the hyper side, and my doctor is monitoring them (and he hasn’t noticed till I pointed it out).

Please bear in mind that many who post online about very bad side effects are those that are having a particularly rough time. For those with a smooth ride, there is little reason to post. Personally, I am grateful to be able to get this treatment rather than harsher ones. I can recommend the Keytruda and I Facebook group for ongoing support from a bunch of people who are going through treatment.

Cheers, Rikke

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On 2/15/2022 at 12:18 AM, Karen_L said:

I don't have experience with Keytruda, but I have been on some other stuff that was gnarly for me. I learned as much as I could, and then hoped for the best.

If you are going to research, make sure you use reputable sites. My doc gave me tons of reading about drugs, all from chemocare.com. That may be a helpful place to get some information. 

Hang on,

Karen

Thank you, Karen. 1st infusion is later today (Feb 16)

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