Heartbroken for my dad.

[EmmaOlli89]

Hi everyone,

I have been going through this forum and finding solace in my new darkened days. Last year we faced my mother's breast cancer and now exactly a year later she is doing absolutely fantastic. I thought the dark days were behind us... but now we have found out that my father has lung cancer. He woke up one morning with a swollen face and then one test lead to another, and here we are waiting for the full report on his biopsy and waiting for an appointment for his brain MRI scan. PET scan was done today... we should meet the oncologist which he is being transferred to in about 2 weeks when all the results are in.

He has lost about 3kg in a month, has low hemoglobin levels and has no appetite. He is also a smoker so the diagnosis didn't come as a total shock. But I am having a hard time digesting this. My father isn't the strong, spirited and positive person that my mom is - it was my mom's attitude that got her through her surgery, chemotherapy and radiation. That and science, obviously, because science is great. And so is the oncology team here. But still.. I am not ready to face this and I am terrified it is so advanced and too late to treat. He just turned 67 a few weeks ago and has a history of diabetes and cardiac problems... I just feel so defeated and it all feels so very unfair. I don't know how to help him except to act normal. I make him smoothies and green juices to give him some strength and he obliges and gulps down.. but he is scared, I can tell. 

What can I do? how does one face this again?

[GawaMark]

I'm new to this forum myself and don't presently have lung cancer or any family members with it so it's hard for me to relate.

However all I can say is to try not to worry too much about things which you can't change or alter. I've done alot of research on lung cancer recently and there are alot more treatments available nowadays compared to the past.

The fact that the only noticeable symptom at presentation is a swollen face I would take solace in to start with as that suggests the cancer isn't currently causing any noticeable impact to his lung function at present. 

There is also alot of research which suggests cessation in smoking at diagnosis can improve prognosis so if posssible I'd try to get him to quit or at least take measures to reduce the smoking or change to vaping. As a smoker myself I know it can help with anxiety so this may be a challenge given the news. 

I think it's very much a mental battle as much as it is physical and from what you've described I'd say your dad is struggling alot with the mental aspect at present. Between chemotherapy, immunotherapy, targeted therapy, radiotherapy and surgery there are alot more treatment options available which can improve prognosis, which your oncologist can hopefully help with.

In the mean time for yourself I'd do some research on alternative treatments which you can look to do on top of the above too. I don't know a great deal about this myself to advise but I've read numerous studies on stuff such as intermittent fasting or cutting out sugar. Some countries seem to have much higher lung cancer survival rates than others too so I'd research into the lifestyles of those countries and treatments and see if there is anything which you can adapt there too. 

I'm really sorry to hear you're going through this though, especially given your mum's diagnosis last year; I'm sure this must be very tough mentally. I think it's just as important to also look at support mechanisms for yourself too so that you've also got the strength to be there and help your dad through this difficult time. 

[Babs]

Hi Emma,

I’m sorry to hear about your Dad.  I too had swelling in my face and neck which is what prompted me to go to the Dr.  Turned out I had a large mass in my mediastinum that was inoperable.  That was exactly 2 years ago and I’m not planning on going anywhere anytime soon.   I went through chemo and radiation, then immunotherapy and am now doing a clinical trial.  They have come a long long way in treating lung cancer in the last few years.  
 

The waiting is the hardest.  Once you meet with the Oncologist and have a treatment plan, you’ll all feel better. Please keep us updated and know that we’re here for you and your Dad.

Babs

[Judy M2]

We are always shocked at our diagnosis of any type of cancer. But your mom is a survivor and your dad could be too. The waiting is so hard, but once the results of the testing come in, your dad will have a path forward. It's been almost 2 years since my Stage 3b diagnosis at age 66 and I'm now NED (in remission) after chemo and radiation, and I'm  currently on a maintenance of targeted therapy for the gene mutation that is driving my LC. Like Babs, I don't plan on going anywhere anytime soon. 

I just want to caution you and @GawaMarkagainst Dr. Google. Statistics are outdated and do not necessarily reflect current treatment outcomes, and it can be depressing reading. We are individuals, not statistics. To get the most up-to-date information, I recommend the (virtual) LUNGevity International Lung Cancer Survivorship Conference coming up in August (link below). The GO2 Foundation, cancerGRACE.org and American Lung Association are also great resources for information. Hang in there and I hope you'll keep us updated about your dad's treatment plan. 

https://lungevity.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=996

[EmmaOlli89]

Thank you for these heartwarming responses. Please keep my dad in your prayers/thoughts/whatever you believe in... we really need it. I need to muster the strength to face this again and I am not sure if I can. Last year hit me hard; I quit my job and delayed my wedding to take care of my mom. Of course my family was here, but I took it upon myself to nurture her and take care of her more than anyone else. I am just not sure if I have anything left in me to do it again... but I know I must. If I did it once I should be able to do it again, right? Luckily, my mom has been through this so she will be of a greater support to him than I can ever be... it's the little things, I guess.

@GawaMark yes, the x-ray didn't seem to show much more than a mass in his lung. I forgot to mention it is about 7cm... so pretty large and scary, but I don't want to jump into any conclusions yet. Not before we have everything in and we have seen an oncologist. I think he has cut down on his smoking and he has definitely cut our refined sugars.

@Babs yes, waiting is the hardest. I still remember the anxiety I felt last year so clearly... and it still haunts me today. It was very difficult but I did feel much better once we knew everything. So happy you are doing well and I wish you all the best. Thank you for your wonderful and hopeful message. 

@Judy M2 so great that you are NED now!  lots of luck and positivity to you.

I will keep you all posted... but thank you for putting a smile on my face. This forum changes so much and I am so glad I came across it. Thoughts and prayers to everyone out there.

[Judy M2]

My main tumor (lower left lung) was 6 cm and I also had lymph node involvement, so surgery wasn't an option for me. Chemo and radiation took care of everything. Admittedly, it wasn't easy but I made it through. Please know that there are Stage 4 survivors out there who are doing well. 

Emma, I hope you were able to have your wedding. I'd suggest that you try to engage your other family members into supporting your dad. Caregiving is very stressful, as you know, and it's an awful lot to carry the load all by yourself. Your parents are lucky to have your support. 

[LUNGevityKristin]

I'm sorry to hear about your dad's diagnosis.  We do have a Caregiver Facebook Group and monthly Caregiver Meetups to support caregivers. https://lungevity.org/for-patients-caregivers/support-services

Please keep us updated on how your dad is doing.  And feel free to lean on us as much as you need to, we are here to support you.

 

[Dona]

11 hours ago, EmmaOlli89 said:

Thank you for these heartwarming responses. Please keep my dad in your prayers/thoughts/whatever you believe in... we really need it. I need to muster the strength to face this again and I am not sure if I can. Last year hit me hard; I quit my job and delayed my wedding to take care of my mom. Of course my family was here, but I took it upon myself to nurture her and take care of her more than anyone else. I am just not sure if I have anything left in me to do it again... but I know I must. If I did it once I should be able to do it again, right? Luckily, my mom has been through this so she will be of a greater support to him than I can ever be... it's the little things, I guess.

@GawaMark yes, the x-ray didn't seem to show much more than a mass in his lung. I forgot to mention it is about 7cm... so pretty large and scary, but I don't want to jump into any conclusions yet. Not before we have everything in and we have seen an oncologist. I think he has cut down on his smoking and he has definitely cut our refined sugars.

@Babs yes, waiting is the hardest. I still remember the anxiety I felt last year so clearly... and it still haunts me today. It was very difficult but I did feel much better once we knew everything. So happy you are doing well and I wish you all the best. Thank you for your wonderful and hopeful message. 

@Judy M2 so great that you are NED now!  lots of luck and positivity to you.

I will keep you all posted... but thank you for putting a smile on my face. This forum changes so much and I am so glad I came across it. Thoughts and prayers to everyone out there.

Emma I am so sorry about your dad. It sounds like he's a very proud and most likely scared man.

Please know that there are survivors on this forum and even though in your mind it seems like doom and gloom, there have been massive advances in treatment in just the last few years. Pls stay away from Dr Google,he can be a nasty doctor 

As Judy mentioned, her mass was 6cm, I currently have a 5.4ish (3 scans, 3 different measurements, taking the middle nbr) mass that has not yet been officially diagnosed as cancer, but my Drs think it is. I go in Thursday for a bronchoscopy and ultrasound biopsy so my dx will be forthcoming. I'm holding on to hope, with credit going to this forum. I was in the dumps before I discovered the wonderful survivors on thus site.

I'm sure once your dad realizes that there most likely will be treatment options for him, he will come around and embrace hope. You are playing such a large part in his current situation, and if you maintain a positive attitude it will rub off on him.

Please keep us posted on his progress.

Dona

[TJM]

Emma

The diagnosis is like a punch in the stomach, especially for your dad.

I can't add much to what you've already heard but I do have advice on how to approach him

 FWIW I have stage III Large cell. So. My advice is to do what your doing (act normal). I would add the idea of asking him how you can help. He might deflect at first...but get creative. "Hey Dad. You want an ice cream cone". Cheesy I know...but it's the kind of little thing that helped me

Wishing you the best

Peace

Tom

[EmmaOlli89]

Thank you everyone for taking the time to get back to me. I am definitely trying to keep it as normal as possible around here... but he just seems so doom and gloom. I am hoping this changes once the diagnosis and plan is given to us and once we see the oncologist.

We heard back from the PET scan and something had apparently 'lit' up in his left armpit, so there will be an ultrasound done along with a brain MRI next week. We had the same thing happen last year as part of my mom's diagnosis, however her 'active' lymph nodes in her neck and uterus turned out to be benign, so I am holding on to the idea that this is the same thing now. However, what will come will come and we must face it head on.

I started reading a very enlightening book which was recommended under a different topic in this forum. It's called The Emperor of All Maladies by Siddhartha Mukherjee, and it has been so great to read! I think understanding cancer is helping me cope and accept it, so I highly recommend it to everyone out there too.

I will keep you all posted. Until then I will be thinking you all and wishing you the best on your paths. Please keep us in your thoughts too

[TJM]

That's a great book. I actually read it before I was diagnosed. I too highly recommend it.

Peace

Tom

[EmmaOlli89]

Hi super supporters. We heard back with an initial diagnosis and were told it's an undifferentiated sarcoma, which is apparently very rare and very aggressive? Anyone here know anything about this? His brain MRI came back clean and his PET scans shows that is hasn't spread anywhere else, except for two tiny lymph nodes in his armpit. We are going to do a biopsy on that next week. 

I am happy that it hasn't spread, but wow does this sound scary as hell. I feel very conflicted and oh so very angry. Now waiting to hear back about the "staining" test results and treatment plan... until then Please keep us in your thoughts.

[LouT]

Emma,

When we go through this ourselves or on behalf of our loved ones we can feel so many emotions.  So, I fully understand what you are experiencing and I can only counsel you to take it easy on you and try not to think ahead too much.  That just causes additional anxiety and this disease already has enough of this for us.  Please keep us updated.

While I can't really comment on "undifferentiated sarcoma", I am glad to hear that there were no brain mets and the spread may be to only two lymph nodes.  That is something to be grateful for (yes, even with this disease we find ourselves grateful for anything positive).  Please let us know as you learn more and you father as well as you are in my thoughts and prayers.

Lou

[unknown00]

Any updates @EmmaOlli89?

[EmmaOlli89]

Sadly, I have no real good news to share. My father is continuing to lose weight and growing more and more fatigued by the day. It's very nerve wrecking to watch; he has no appetite except for cold juices and smoothies. I try to make these as nourishing as possible. He is also very moody and depressed, but the hospital did set an appointment with an oncology psychologist today; I just hope he opens up to her and finds some comfort. 

We did see his oncologist who assured us these symptoms are normal, but I was wondering if anyone else here faced these before treatment (anger, loss of appetite, night sweats, weight loss)? 

He has another lung biopsy on Thursday so that they can get to the bottom of this. (My rage with the delay is a whole other topic). They are putting in a camera so I think this is called an endoscopy - sorry, I am not well versed with these medical terms. They will then put in a pipe to drain his lungs of any fluids, etc for up to 3 days. Did anyone else have this procedure done, too?

I really hope we can start treatment soon. We were told that due to the size it is a stage 4 and that sent shivers down my spine. We are very scared and we are very distressed with the extreme and sudden physical changes, but I do like his oncologist and we have been told by other hospital staff that he is one of the best for lung cancers. 

Oh, and the biopsy from the nodes in his underarm came back negative so cancer isn't spreading for now. Which is good news, right?

Please keep us in your thoughts and lots of love to you all super supporters.

[Tom Galli]

Emma,

Anger, loss of appetite, night sweats and weight loss--yes to all! And endoscopy and drain installation, yes also. Know that it may be possible to obtain a diagnosis from the fluid captured by the drain. 

And you are quite correct to celebrate the negative finding from biopsied lymph nodes under his arm.

I do hope you get a definitive biopsy so treatment can start soon.

Stay the course.

Tom

[LouT]

Hi Emma,

This is such a hard time for you.  Anytime the word "negative" is used with "biopsy" is a good time.  Hopefully they will get a treatment going soon.  Please let us know.

Lou