Husband diagnosed yesterday

[Kristin BG]

Wow. What a difference a few days can make. Thursday my husband disclosed that laat week he’d finally gone to the Dr about his chronic cough and had been referred for an immediate CT scan after 2 troubling xrays. Friday morning the oncologist called to say the mass in his lung appears to be cancer.

Cue the plunge into the research vortex, the anxious waiting for the staging process to be accomplished, and the hard conversations with loved ones where you say, “not looking good” but have no real answers to their question “how scary is this this?”

Glad I found this forum! I’ve already read through a couple of very helpful articles and was able to exhale a bit. Thank you for the timely and knowledgable support you provide to patients and caregivers!

[Pstar]

Hello Kristin, welcome and sorry you need to be here. I’m sure the next step will be the biopsy ,then staging and treatment plan. The initial shock of it all is the hardest but once the treatment plan is in place you feel a little more in control. Keep us updated.

Pam

[LouT]

Kristin,

Welcome to our forums and I'm glad to hear that you have already looked around.  This is a great place for you (and your husband) to come for support, hearing others experiences, as well as learning how to navigate this journey while avoiding the many pitfalls that can befall you.  There are some things I would recommend to you:

1. Share all that you get below with your husband.  He'll find a group that understands what he is going through.
2. Read a blog titles "10 Steps to Surviving Lung Cancer; From a Survivor" (click on the title).  It was written by someone who was diagnosed at Stage 3, went to Stage 4 and today is considered cured 18 years after his diagnosis.
3. We also have an area for caregivers called, "Caregiver's Resource Center", and you may find it helpful as you support your husband through this disease.
4. Next is a great section of our Lungevity site titles "Lung Cancer 101" where there is a huge amount of information that can help you as you move forward from diagnosis to treatment, and then onward.  
5. Last note...DO NOT LOOK TO DR. GOOGLE FOR OUTCOMES!!!  There are many reasons for this; the first being the the prognosis cited are five-year averages that don't include the latest treatments and available tools used in fighting the disease.   Next, each patient is different, their reaction to treatment, the cause of their cancer, the stage at diagnosis, etc...so stick with your medical team and never be afraid to get a second opinion.  We have super people here who were told to "get their things in order", and many years later they are still living full and happy lives.

So, stay strong, learn all you can about the disease, treatment, outcomes, and keep connected with like-minded folks.

Lou

 

[Karen_L]

Has there been a biopsy? Has the tissue been sent for biomarker testing? Has a blood biopsy been done in the meantime? The biomarker information is crucial in establishing the most current care. 

Info on tissue biopsies: https://www.lungevity.org/for-patients-caregivers/lung-cancer-101/diagnosing-lung-cancer/tissue-biopsies

Info on biomarker testing, including blood biopsies: https://www.lungevity.org/for-patients-caregivers/navigating-your-diagnosis/biomarker-testing

Recent webinars I've attended indicate that, while tissue biopsies are considered the diagnostic gold standard, more and more, oncologists are doing blood biopsies to get a jump on planning treatment. 

Hang in there. This is tough. Just keep putting one foot in front of the other....

Karen

 

[BridgetO]

Hi Kristin and welcome here. You've got some great advice  from other members already, so I won't belabor or repeat it. Please stay in touch. Let us know what questions you may have and how we can support you. That's what we're here for.

Bridget O

[Justin1970]

Hi Kristen 

I'm really sorry to hear about this, please stay strong and as positive as possible, once you have all the information and start the treatment you will all feel a bit better, 

Goodluck and take care Justin x 

[Izzy]

Hi Kristen, Sorry to hear your news, my son is Justin who was diagnosed with NSCLC in 2021. He was 51. This is so scary and I know you will be struggling (I still am). We all know this is no easy disease to get your head around but you will now be able to process things as you have a diagnosis. Seeing someone you love go through this is heartbreaking but there really are lots of positives, this forum being one of them. It has helped me immensely and I know Jus has found it really helpful. Once you get a plan in place and  treatment starts it will be a bit easier as your doing something. Please feel free to contact me any time you need a shoulder it's sometimes helpful to know someone is in the same boat as you, keep positive and stay in touch, it really does help to talk, xx love Isla xx

[Kristin BG]

Hi all. Happy to say that my husband was scheduled for all the fact-finding procedures for 1/25: biopsy, MRI, PET. I'm so grateful to get these all done on the same day to shorten the wait time for staging and identifying a treatment plan. It's been the longest 2 weeks of my life; just 6 more days to go.

He has an appointment with the pulmonologist tomorrow, and I'm so glad I'm going with him. He and I are coping very differently. I MUST research and learn as much as I can about the disease in all its forms so I can understand when the Drs talk with us. It's not an option for me not to research, and I refuse to let myself be scared by the grim prognoses I run into. It's a double edged sword, to be sure. I'd rather know the facts and wait to fully freak out until the Drs. give staging etc. My husband, however, is profoundly uncurious. It's crazy to me, but we all process differently. I'm hoping the pulmonologist (the appointment was made long before the CT scan) will have more details about the CT and X-rays my husband had. My husband can't remember what the Drs. said at the time and frankly he's not as clued in to the details at this point as I am. His tumor is 8cm and had lymph node involvement. However I'm unclear whether there is mediastinum involvement or not, which could make a big difference in staging - possibly? I'm getting slightly conflicting information on staging parameters. Some seem to indicate automatic stage III because of the size (>7 cm), but others really emphasize mediastinum involvement as the main characteristic of stage III. Regardless, I think the best we can hope for is IIB.

I'm not sure if it's all in my head, but could his symptoms already be getting worse in just the 2 weeks since his CT? Not sure if he's sleeping more because of the depression and stress of the waiting or because of disease progression. His cough seems a bit deeper, but the real worry for me is his waning appetite. It's nothing drastic, just noticeably less.

While my research has uncovered some scary stats, I've taken heart from you all. Immunotherapy and the new treatments have radically changed the lung cancer landscape, so I'm clinging to hope that whatever it is that's growing inside my husband is very responsive to these new options. Hoping also for clear PET and MRI signs showing NO metastases. These are my prayer petitions.

Again, thank you for your knowledgable and compassionate support!~KG

 

[Susan Cornett]

Kristin - 

Glad to hear there is a diagnostic plan in place. The waiting and worrying is the worst. If you haven't already, get a notebook to write down the questions that pop up between now and then, and those you will undoubtedly have going forward. I always took a notebook to see Super Doc - that was the only way I could remember my questions each visit.

Now...step away from Google! Those survival statistics are not reliable for so many reasons, mostly because they are out of date. We've had so many new treatment options in the last few years. My 5 year prognosis at time of diagnosis was 18%. That was nearly 7 years ago.

Keep us posted.

[Karen_L]

Kristin,

It's always a relief to get the testing process going. I remember looking at the doc's PA and saying, "why is this testing taking so long?" His response: "Oh, you don't understand-- this is a super fast response to your situation." Waiting is one of the mean realities of lung cancer.

I am the researcher in my family, and my husband is the "whatever the doctor says" kind of guy. But in the first year and a half, he came to every appointment and took notes because I just couldn't absorb what they were saying. 

I think expecting yourself to know the facts at this point is tough, because there are so many unknowns about your husband's situation. But all the questions you asked here are exactly what you should ask the pulmonologist, and keep asking until you feel you understand what's happening. 

Good luck-- keep us posted. 

 

[Judy M2]

Hi Kristin, it is best to stay away from Dr. Google, and pay no attention to statistics. 

It's vital that the biopsied tissue is sent for biomarker testing, as Karen suggests. 

I'm a 3-year survivor (so far) of Stage IIIB EGFR+ NSCLC. I just want you to know that it is possible to live well with our disease, even at Stage IV. 

[Kristin BG]

Well. We got results. 

This lung cancer is a metastasis of my husband's colon cancer he had 5 years ago. When the lung cancer was found the oncologist told him it was not related to the colon cancer because my husband was just given the 5 year all-clear in late November - just 5 weeks before the troublesome lung CT. Back then the colon cancer was stage 2 and no lymph node involvement. After the resection, the Oncologist told him it was unlikely to recur as they had caught it early and everything pointed to it being "cured." It’s just crazy to me that this has hidden undetected for 5 years. But that explains why the lung mass is SO large. These last 5 years, my husband has been diligently going for his follow up tests and blood draws and there was never any indication that the cancer was making the rounds. Just crazy. It is Stage IV adenocarcinoma metastasized to lung and brain. Yes. It's in his brain. 2 confirmed lesions, 1 suspected. They are small: 9mm and 6mm, one in the left and the other in the right parietal lobe.

Gutted.

 We have chemo planned for the 8cm beast in his left lung, and stereotactic radiation for the brain lesions. Will start those mid to late February. Kind of a long on ramp for the chemo, so radiation might start first. Then probable surgery after the 6 months of chemo (Folfox). They are entering him in to a clinical trial for some sort of immunotherapy. So, we've got a 4 pronged treatment plan.

Anyone have miraculous, encouraging stories of brain mets living years and years? Would love to hear them.

We are staying the course. Trying to be positive for my guy.

~K

[LouT]

Kristin,

Okay, you've got a solid diagnosis and a plan for treatment and all that is good.  There are a number of folks here who will comment on the Stereotactic Radiation as it has shown itself to be quite successful in many cases.  Regarding the surgery, there is a blog here called "Thoracic Surgery Tips and Tricks" please share it with your husband.  It will provide pre-surgery, hospital stay, and post surgery tips on getting through the surgery easier, it can be found here. 

You should also check into our forum "Chemotherapy".  You'll get support and counsel there from others who have gone or are going through the same treatment protocol.

And yes, there are folks here with history of brain mets and stages III and IV that are also survivors. 

Lou

[Karen_L]

Kristen,

Nothing can take away that feeling of being gutted. But here are a few thoughts: I had a brain lesion that was fried by a gamma knife procedure; it’s gone. I met someone last summer who has had 29 brain mets, all successfully treated. One of the people in my local lung cancer group has been living with Stage 4 for 16 years. 

Your husband, with you, will get through this, one step at a time.. And together, you will find joyful moments, maybe as small as a hummingbird at a feeder, but find them you will.

You can do this!

 

[Kristin BG]

Thanks for the encouragement. This whole experience has been so up and down - just riding the waves as best I can. Your words of advice, testimonies of successful treatment, and links to resources is so appreciated and just what I needed. Truly, it lifted my spirits. Thank you.

Chemo begins soon, SRS soon after that, kicking cancer’s butt after that. We’ve got a full a schedule.

Staying the course!

~K

[Justin1970]

The whole way of life will change unfortunately, it will never be the same as it was but it will become your new normal and you will get through this, once the treatment starts and you see results it will make all the difference, 

Sometimes it takes a while to get to that stage but it is achievable so try and stay strong and positive 

Goodluck Justin