Coping with my dad having cancer

[Courtney]

I’m new here and hoping for some answers. I’m confused and hurt and honestly I’m a bit numb. I’m not sure how to handle this. 

 

Almost a week ago, my dad woke up and his face was swollen so badly he couldn’t even open his eyes. He had chest discomfort too and they thought he was probably having an allergic reaction to something. My mom took him to the E.R and the doctor decided to give him a chest X-ray. Then, after seeing the results decided to give him a catscan. Suddenly, he was transferred to another hospital to their ICU department. We were informed that he had a large mass that was pushing into his superior vena cava and because of this it was collapsing. The next day, they put a stent in the vein and did a biopsy of the tumor. Then, they did a brain scan, a bone scan and some other tests. Yesterday my parents sat me down and told me that my dad was diagnosed with non small cell lung cancer. My entire world came crashing down. I swear the walls in the room started closing in and I felt like I literally could not breathe. I asked them what stage he had and they said they wouldn’t know until the biopsy of his lymph nodes came back. Apparently those are all swollen and the doctors believe the cancer has spread. They said If that’s the case, he is stage 4. Stage 4?! The tumor in his lungs is 7cm, that seems quite large to me? The doctors say they can’t even remove it because it’s around too many important organs and arteries. My dad said they are going to try chemotherapy. 

Has anyone been in a similar situation to this? I barely know anything about cancer and my mind is racing with questions.

[BridgetO]

Hi Courtney,

I'm sorry to hear about your dad's cancer.  This is a frightening situation for you and your reaction is normal. 7 centimeters is a fairly big tumor. There are a lot of treatments for lung cancer, many of them new in the last couple of years, and new ones are being tested and approved often. You'll probably hear from people who have been in similar situations, who were diagnosed after some  sudden alarming symptoms.

If you want to learn more about lung cancer, a good place to start is Lung Cancer 101 on the Lungevity main site. if you haven't been there yet, the link is https://lungevity.org/for-patients-caregivers/lung-cancer-101. When looking for online information about cancer, be careful about your sources, since not all of them are reliable. Also, don't get hung up on survival statistices. Most of them are based on  5 year survival. With all the new treatments, the stats on lung cancer  are out of date by the time they're  published. These forums are a good place to find information, hope and support. Let us know what questions you have and how we can support you. That's what we're here for.

Bridget O

[Courtney]

Thank you for your response. I’ve been trying not to google anything because I feel like that would drive me even more crazy. I just hate how everything is a waiting game, I wish they could magically tell me all the answers. 

[Kleo]

Hi Courtney and Welcome....

Good idea not to google too much! I did at first and scared myself silly. I had a pretty large tumor as well. About 5- 6cm. Mine had spread to nearby lymphnodes. I was initially staged at 3B.  I also could not do surgery due to the lymphnode activity. 

I did chemo and radiation, and have now begun 1 year of immunotherapy. 

Once they get the biopsy results, they'll be better equipped to give dad a good treatment plan. I know it's so scary at first. 😫  

We have new immunotherapies out now that are working really well too.

Try to keep us posted!

 

 

[Courtney]

Well, that makes me feel better. How are you doing now? My dad says they can’t do radiation but are planning on chemo and immunotherapy. I just hate how it’s all a waiting game on results and more tests. I just want to be here for everyone, especially my mom. But, it’s overwhelming. What did you find you needed most from your loved ones when you found out? 

[Robert Macaulay]

Imagine if they did not do all those tests to verify, and put a individual on the cancer bus that did not have cancer.

[Steff]

Courtney,

I know the feeling all too well when you are told your parent has lung cancer.  I felt this way when my mom was originally diagnosed and then when her recurrence was diagnosed.  I've always described it as a punch to the gut.  Along with all of that comes the confusion and the need to get as much information as possible.  Been there, but believe me, you will survive this.  The sad reality of lung cancer is that it is often diagnosed as stage 3 or 4, as was the case with my mom - stage 3A, non-small cell adenocarcinoma. 

So, you know he has cancer, that waiting game is over.  Has he gotten back results for any biomarkers yet? These tests will be able to tell docs if he is a good candidate for immunotherapy or targeted therapy.  While the first order of business will likely be to shrink the tumor, docs will be taking a look at any other possible sites of cancer to devise a plan of action.  Unfortunately all of this leads to lots of waiting.  Many of us have waited 2-3 months to get all testing back and to start some kind of treatment/have surgery.  

Although you may be feeling hopeless at this point, I am here to say there is hope.  I was hopeless once too, but then I found these forums and began to educate myself with the proper information.  I wanted to be sure to be the best advocate for my mom.  A great place to start is LUNGevity's Cancer 101, you can find it  here.   I also found the questionnaires that LUNGevity has very helpful.

You will have lots of questions along the way and this is a great place to ask them.  We are also here to support you along the way.  

Take Care,

Steff

[Tom Galli]

Courtney,

I'm also sad to learn of your father's diagnosis.  If it is any help, my tumor was 7cm long and 2.5cm wide completely filling the main stem bronchus of my right lung.  That was in 2003.  I've survived 4 thoracic surgeries, 3 stent insertions and removals, conventional radiation, 18 infusions of chemotherapy, 6 weeks of targeted therapy (Tarceva), and precision radiation.  I experienced nearly 4 years of continuous treatment and I'm still here.  So if I can live, so can your dad.

You asked what you could do for your father (needed most from a loved one).  First, be a second set of eyes and ears and ensure he never goes to a doctor consultation alone. Lots of information and new vocabulary is typical for an oncology consultation and a second listener is often necessary to ensure understanding. He may have conventional chemotherapy (likely pemetrexed and carboplatin), perhaps 2 infusions spaced every three weeks either before or concurrent with immunotherapy.  You may want to accompany him as he gets conventional chemotherapy.  The infusions could take about 6 hours or longer and he might enjoy a card game with his daughter to pass the time.  Alternatively, you might arrange to bring him lunch. I was hungry.  I had to take oral steroids every six hours before the day of my infusion and then the first bag infused was steroids.  Steroids caused hunger and after my wife served lunch at the clinic. We'd stop at Denny's on the way home and I'd devour 2 Grand Slam breakfasts! This may help him prepare for his infused chemotherapy. 

Immunotherapy is a new treatment that is displaying amazing results for those with lung cancer.  Here is information you might want to read about immunotherapy. Depending on the drug and his response, immunotherapy drugs are normally given in pill form, once a day for perhaps eighteen weeks.  You may want to visit our Immunotherapy Forum to learn about our member's first-hand experience.

Waiting and worrying were my most signifiant challenges.  In my day, scans were recorded in actual film that needed to be transported to a radiologist.  I sometimes waited more than 3 weeks for scan results.  While digital recording and transmission has reduced the radiology wait time, there are still delays and delay is maddening to a lung cancer survivor and family.  I call the waiting and worrying Scanziety; indeed it bothered me so much that I wrote a book about it.  

You are most welcome here. Encourage your father to join us.  There is a wealth of knowledge on this forum for we are all lung cancer survivors or caregivers who have been there and done that.  Accordingly, this is a good place for questions.

Stay the course.

Tom

   

[LaurenH]

Hi, Courtney,

I’m very sorry about your dad’s diagnosis but I’m glad to see you’ve already connected with several members and moderators of this community who are long term survivors. This site is a great place to ask questions, get support, and connect with others who have experience navigating a lung cancer diagnosis themselves, or being a caregiver to their loved one with lung cancer. Please continue to ask questions and share updates on how you and your dad are doing. We are here for you!

I’m also happy to give you more information about LUNGevity’s support and education resources. Feel free to PM or email me lhumphries@lungevity.org.

With gratitude,

Lauren
—
Digital Community Manager
LUNGevity Foundation

[DDOT]

On ‎10‎/‎22‎/‎2018 at 1:12 PM, Courtney said:

Well, that makes me feel better. How are you doing now? My dad says they can’t do radiation but are planning on chemo and immunotherapy. I just hate how it’s all a waiting game on results and more tests. I just want to be here for everyone, especially my mom. But, it’s overwhelming. What did you find you needed most from your loved ones when you found out? 

We first knew something was wrong in April 2018, when my husband age 70, started losing weight, was nauseous, couldn't eat and had pain in his left abdomen. A CAT Scan revealed a tumor on his left adrenal the size of a tennis ball. His Urologist thought it was 80% unlikely to be malignant so he scheduled surgery. Then they ordered a full chest CAT Scan and that showed a tumor in his right lung which was spiculated in shape, which most times means cancerous. That surgery was cancelled. So from the April 20 tests our family doctor ordered to a roundabout of doctors, surgeons, radiologists, CAT Scans, MRIs, PET Scans, numerous blood tests, biopsies, endoscopy , PdL1 #  next generation cell sequencings and check for mutations. They needed all those tests to know precisely what type of cancer and where it was and what treatment plan would work best. My husband is Stage IV NSCLC and was also not a candidate for surgery or radiation. We finally started treatments on July 13, 2018. He is receiving Immunotherapy(Keytruda) and Chemotherapy(Alimta and Carboplatin) infusions every 21 days, that means he is getting medication via an implanted port directly into a vein in his chest and takes about 4 hours. I don't know your age but sounds like you are old enough to be Dad's doctor visit recorder with your iPhone. One of our sons goes with us to every appointment and records notes and pictures of scans, and we go over it at home to make sure my husband and I  understand. They also have a tagged group of family members: brothers, sisters, children and grandchildren, who get a report on our visit so we are not answering a bunch of phone calls and questions. That is a great help to us aged 70 & 68, who are not as electronically savvy. 

[Sandy Parker1950]

Courtney, how is your dad doing?

DDOT, any updates about your husband?

My thoughts are with you guys and stay strong.

[djoowiks]

Good idea not to google too much! I did at first and scared myself silly. I had a pretty large tumor as well. About 5- 6cm. Mine had spread to nearby lymphnodes. I was initially staged at 3B.  I also could not do surgery due to the lymphnode activity.