Just Diagnosed April 2022

[Cornelia]

I was just diagnosed this week with lung cancer. I was stunned. I am 71 years old, smoked since I was a teenager, but quit in 1997. How could it be? I had an appendectomy in 2019 and the radiology report said they saw a 2.2 cm nodule in my right lower lobe. They gave me a second CT scan and that DR said it was nothing in his report. I trusted him and thought I was clear. A couple of weeks ago I had vertigo for some reason and went to my primary and had CT scans for the carotid arteries and my heart for plaque. You can guess what they found - a lung mass, same place but 3.3 x 4cm. I am devastated. I have to have another bronchoscopy w/ebus in the coming weeks to see if it has spread to the mediastinal lymph nodes. I am told if it has, I cannot have surgery, which I don't understand. If anyone could help me here I would appreciate it.  

[LouT]

Cornelia, 

Sorry to hear that you need to be here, but glad that you found us.  We sure know what you are saying about getting the initial diagnosis.  Over the next number of days you'll be going through many tests.  But the real gold standard is the biopsy.  Much can be learned from a sample of the tissue in question.  Please remember to ask for biomarker testing when they do the biopsy.  That information can take a bit of time to get, but can have a wealth of information that can drive your treatments going forward.  I'd also like to share a blog article titled, "10 Steps to Surviving Lung Cancer; from a Survivor".   It has a lot of very good information for someone just starting this journey and it can be found here.

Keep coming back as you go through this both for answers to your questions and to hear the experiences of others with similar situations to yours.  

Lou

[RJN]

Welcome Cornelia,

Yes, I think most of us start with “how can that be?”. Sorry you are here, but hope you will find this forum as helpful as I have.

To answer your question re surgery, basically once cancer has spread to lymph nodes (or elsewhere), it is considered that the horse has bolted, and has spread beyond the original site. In the UK at least, such cancers are not considered operable, since the risk of surgery isn’t weighed up by the benefit (I understand that in the US surgery still happens in some cases) . BUT no surgery doesn’t mean no treatment, and not necessarily a poorer outlook. Many, many of us are doing fine on immunotherapy, targeted therapy, sometimes combined with radio therapy, without ever having seen a knife. But wait and see what they say and let us know. So many well-informed people in this forum and you will be able to get great advice/support.

All the best, Rikke

[Tom Galli]

Cornelia,

In lung cancer, the diagnosed Stage is a key indicator for surgery as a treatment method. Here is information about lung cancer staging. Generally (and that is a misnomer because everyone is different) a diagnosed stage less than say IIIA suggests a surgical approach. But, there are many factors involved in a surgical decision and your post suggests you have other medical risk factors at play that will likely factor into the decision.

Fortunately, today there are alternatives to surgery. The first, and one that I have actual experience with, is precision radiation often referred to as 4-letter abbreviations like SBRT, SABR, IMRT and others. I'm a fan! SBRT saved my life and stopped cold my string of recurrences. So, I'd broker a consultation with a radiation oncologist who performs this specialized form of therapy. 

In my years of treatment, my non small cell squamous cell lung cancer had only two drugs: taxol and carboplatin. They were not very effective against solid tumors, and I had 18 infusions of both that largely caused a multitude of lasting side effects. Fortunately, modern conventional chemo drugs are now available with increased functionality and decreased side effects. Moreover, they are very effective at treating systemic disease. Additionally, we now have targeted therapy and immunotherapy as new therapies and these can be very effective. These new therapies are often combined with new conventional chemo drugs. Complicated? Yes but effective.

Hopefully your bronchoscopy will yield enough tissue for a biopsy (really two these days: a histology exam and follow on lab testing). Histology results should be available almost immediately after your procedure and these disclose the type of lung cancer (non small cell [adenocarcinoma and squamous cell], small cell and  large cell). All these types have different treatment plans. If you have non small cell (NSC) adenocarcinoma, there are new treatment methods called targeted therapy that can be very effective. Almost any type of cancer can be treated with immunotherapy these days. Targeted therapy and or immunotherapy availability is revealed by the follow on lab testing, called biomarker testing. Although follow on laboratory testing or biomarker testing is a standard of care these days, some slip through the crack. Tell your medical oncologist you don't want to be one of those folks.

I was diagnosed in the dark ages of treatment and have experienced every form of treatment but immunotherapy. I've had many recurrences and endure lasting side effects. But, if I can live, so can you!

Stay the course.

Tom

[Cornelia]

OMG, thank you all for responding. I want to cry...but I won't. I had a bronchoscopy last week and it is stage 2 non small cell squamous lung cancer in the right lower lobe, which I don't think is a good place for it to be. I have to have another Bronchoscopy w/Ebus to check the Mediastinal lymph node to check if it has spread there. God I am hoping not, but I should know in the next week or so. Also having a brain MRI to see if it has spread there too. I am scared to say the least. I know I have a long journey ahead of me and I am so grateful for the people that are in this forum. I will keep you posted as I move ahead. Thank you so much. 

[Justin1970]

Hi cornelia 

Really sorry to read your news and hope you have some good answers soon, it is terrible when first diagnosed but hopefully yours hasn't spread to the lymph nodes and can be dealt with quickly try and stay positive about everything and not let it get you to down, the journey is a slow and hard one but you will get through it, the treatments today are working really well and people are living with this disease and thriving, it will be hard to but there is a lot of us going through exactly the same so don't do it alone if you need to talk or ask questions someone on here will always be available to you, I was terrified when I was first diagnosed last August with stage 3 lung cancer in my right upper lobe and lymph nodes at 50 years old but had chemotherapy and radiotherapy which helped shrink the tumors and I started to feel better after the treatments, unfortunately at the end of February this year I had a seizure and had to have another MRI scan on my brain which discovered 2 brain mets causing me to lose the use of my right side properly I have now had gamma knife radiosurgery on them and am feeling a lot better I have an MRI scan in june for the brain to see what is happening and a body CT scan on May 9th to see if the lung tumor is still responding to the treatment, I'm really worried about it all aswell but sadly none of us can change what is going on all we can do is hope and pray for good results and stay as strong and positive as we can, I wish you all the best,

Take care Justin x 

 

[Chuck K]

Hi Cornelia

Like you I was devastated six months ago i was diagnosed with stage 4 lung cancer. I know you want to start treatment now but it takes time for all the tests and biopsy results to come back take a deep breath. I did eventually get a treatment plan.Like Lou said ask about the biomarker test very important. Mine came back positive for ALK mutation so I'm taking 8 pills a day for about 4 months now and the ct scan shows cancer shrinking. When your treatment starts you will start feeling better. It's hard but try to stay positive and do the things you were doing before diagnosis and stay away from Dr google. I check out this support group every day it does help .Keep us posted 

Take care

 

[Judy M2]

Cornelia, everyone has already given you great advice, so I'll just share my lung cancer experience. I was diagnosed in October 2019 with Stage IIIB adenocarcinoma at the age of 66. I had a 6 cm tumor in my lower left lung with spread to lymph nodes, so I wasn't a candidate for surgery. The diagnosis was a shock to me too.

I've had chemo and radiation and, since biomarker testing revealed an EGFR driver mutation, I've been on a targeted therapy since March 2020. I've had No Evidence of Disease (NED) for a year now. It was a long and difficult road for me to get to NED but everything has been worth it. 

The folks here know how you feel and are an invaluable source of information and inspiration. Hang in there, we've got your back. 

[BridgetO]

Hi Cornelia and welcome! You've gotten some good information from other members, so I'm not going to repeat it. One thing though, I don't think that right lower lobe is any worse place to be than any other! I had my lower right lobe removed in  2016 and was diagnosed with NSCLC, stage 1A. I have had no evidence of disease (NED) since.  

Best of luck !

Bridget O

[Cornelia]

Thanks BridgetO, I was wondering if anyone else out there is like me. I am in Stage II and don't know yet if it has gone to my Mediastinal Lymph node. Waiting for my appt on that and hope they call me soon. I feel like all this waiting is wasting time and a month is almost gone..ugh....

[Cornelia]

Justin 1970, Chuck K, Judy M2, I am new at this and didn't see all your comments - heartfelt thanks!!!! I hope I am doing this right in answering you. I have been feeling like lung cancer is a death warrant but I can see by your comments that it is not. Can't tell you all how much your comment mean to me and how much you all have been through too. Thank you...