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What cancer patients, their families, and caregivers need to know about COVID-19.

Scared and just need to vent

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

Hi, my name is Glenna and I was diagnosed on 5-19-09 with NSCLC adenocarcinoma. The surgeon told me it was inoperable and incurable and that he couldn't tell me how long I have which sure sounded like a death sentence to me. He also told me that it was in my lymph nodes but he couldn't tell me where it has spread to, that's the reason I have almost lost my voice and am experiencing constant ear and throat pain on my right side. I am also having headaches every day, which has me concerned that it may be in my brain also. I am going for a PET scan tomorrow and have an appointment with the oncologist on June 4th. Having to wait for 10 days to have my cancer staged and to find out what my treatment options are is going to seem like an eternity.

I just needed to get this off my chest as I don't want to tell my husband or my family about my fears or concerns yet as they are all taking this pretty hard and I don't want to scare them unnecessarily. It's hard for my family as we just lost my brother last year to lung cancer and my husband's brother is in remission right now. Unfortunately neither of our families are strangers to cancer but it never gets any easier to accept.

Thank you to anyone who reads this, I feel a little better just writing this. Most days I manage to stay positive and upbeat but today is not one of those days.

Good luck to everyone out there who is fighting this horrible battle.

MichelleP's picture
MichelleP
Posts: 254
Joined: May 2009

Hello Glenna, my husband also was diagnosed with adenocarcinoma lung cancer last month. He was also told it was inoperable and in his lymph nodes as well. He will be starting his first 6 hr chemotherapy tomorrow and we are told radiation is not an option for this type of cancer.

You said that you didn't want to express your fears to your family, but I think you should. It's important to talk to the people you love right now. You can all give each other emotional support which is critical right now.

My husband doesn't even know the extent of his disease and I myself have no one to talk to about this, so I envy the fact you have family close to you.

God Bless and if you ever want to talk, let me know.

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

Hi Michelle, I'm so sorry to hear that your husband has the same type of cancer and sincerely hope he responds well to the chemo. I'm curious why radiation is not an option as the surgeon who explained my cancer to me said I would probably receive chemo and radiation. As I said I don't meet with my oncologist until June 6th so I still have a lot of unanswered questions.

Yes, I am lucky that I have 2 sisters close by and my daughter and her family and am sorry you have no one to talk to about this as I am quickly learning that you need to talk about it. I just don't want to worry or scare any of my family with unfounded fears, once I learn everything from my oncologist I will most definitely tell my family as they want to help and be a part of my treatment/recovery. When my brother was receiving his treatment one of my sisters, my daughter or I went with him to all of his appointments, partly for support and partly to make sure he understood everything that was going on. He had become very forgetful and couldn't be trusted to remember his appointments.

I would love to talk to you any time you want, sometimes I think it's easier to talk if it's someone who is in the same situation and understands how you feel. I'm not sure how the e-mail for this website works but I'm certain I can figure it out so we can stay in touch.

You and your husband with both be in my thoughts and prayers. Good luck

MichelleP's picture
MichelleP
Posts: 254
Joined: May 2009

Hi Glenna

I'm not sure why the doctor wouldn't want to try radiation. We have his first chemo tomorrow so I will ask then. I can only assume that it was because his chest cavity was so full of fluids. They drained 1500 cc's and then 2200 cc's from him within 10 days and then inserted a chest tube. But, they then inserted talc and the hole in his lung was sealed so they shouldn't be any more fluid now.

This whole experience is just terrible and my heart goes out to you Glenna. I would love to talk to you as well sometime. Are we allowed to enter email addresses here? Wouldn't want to break any rules. I just joined today and am so very happy that I did. I have been desperate for information as well as support.

Keep in touch :) and God Bless You!

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

Michelle -
Sorry to bust in like this, but I'd hate to see one more person posting their Email address publicly - leaving themselves open to all kinds of spam and possibly worse. This is a wonderful site, and 99.9% of the people here are lovely, trustworthy folk, but there are still unscrupulous people out there. On the home page you'll see Connect & Communicate, and under that, CSN Email. You just need to know the CSN nickname of the person you're sending to. Easy.

Thanks, Deb (NSCLC / mets to brain)

ARobben's picture
ARobben
Posts: 46
Joined: Apr 2009

Glenna (and Michelle too!)

All I can say is stay positive. I know, I know...easier said than done.

I was diagnosed with NSCLC, stage 4, in Dec 08. I was also told it was incurable and inoperable. It was also in my lymph nodes and had invaded my chest wall. I have since undergone 6 rounds of chemo. The doctors said that radiation was not advisable.

After three rounds of chemo, the tumor had shrunk somewhat and after a further three rounds remained stable (although it did not shrink any further). Now, I am going for a PET scan on June 1st and will have a consultation with surgeons to see if surgery might now be an option. NEVER take "Incurable" or "Inoperable" as a Death Sentence.

You can read all about how long lung cancer patients live on average and such, or you can arm yourself with facts, treatment options, and stay positive.

On another note, I know how it is to not want to tell your family. I initially went in to the hospital with shortness of breath. Due to a recent trip I had taken to Africa, the doctors suspected I had tuberculosis but they said it could also be cancer, but they didn't think so due to my age (i'm 27, I was 26 at the time) and my health. However, when I called my parents I didn't tell them the doctors said it might be cancer. I didn't want to worry them until it was official.

I can relate to needing to "be strong" for those around you, but it also important to be open with how you are feeling. You can't keep all that inside. Sharing with others can be cathartic! And let them know that you just need someone to listen, you don't expect them to have the answers or always be able to do anything.

Hope this helps!! Best of luck to you with all of your scans! Please write back and let us know how it goes!

laurenr
Posts: 12
Joined: Apr 2009

wow, arobben, it's bad enough that my 69 year old dad has stage 4 lung cancer, but to be only 27, that's a huge shock, or it was to me. You are amazingly positive. Thank you for all your uplifting comments and advice. Every little bit helps. I will keep you in my prayers as well.

ARobben's picture
ARobben
Posts: 46
Joined: Apr 2009

Staying positive is a choice.

I can walk around and say "Why me? How does a 27-year old nonsmoker wind up with lung cancer?" but that won't change the facts. I choose to stay positive, but trust me, I couldn't do it if I didn't have people I could share with. If you're going into a fight...you want as many people with you as possible right? Strength in numbers!! The more people I can have to watch out for me, the better.

And I think the doctors were even a little surprised at this attitude. When they told me I had cancer, I was just like "Okay...what do we do? Let's knock this sucker out." Whenever I had friends visiting me in the hospital, I always told the doctors they were more than welcome to speak openly in front of my friends and family. Whatever they were sharing with me, they could share with them. In my philosophy the more people we can arm with knowledge, the better!

And by the way, for all of you caretakers out there...I know that can be hard as well. But trust me, we don't expect you guys to have all the answers, it's just nice to have someone to talk to. I know there can be a temptation to feel guilty or helpless, like you can't really do anything for us...but trust me, just listening, having a sounding board, is a big help!

onlyonelung
Posts: 1
Joined: Oct 2008

Hello Glenna
My name is Teresa, I was diagnosed back in 2001, I know some of what you are going through, I was lucky, in removing my left lung all of the cancer was caught and did not spread, it was a large tumor, I underwent quite a battle, I too held everything in, I chose not to let my family and friends know what I was feeling or how scared I was, that was not a good thing on my part, my younger sister and my mother were later diagnosed with breast cancer, thats when I came clean to them, I let them know what a hard battle they were about to fight, luckily my sister's battle was a success, my mothers is terminal, I think you should let everyone you care about know exactly what, and how you feel, I regret shutting down communication, letting them believe all was fine, when inside I was a battered mess, I am very lucky to be here today, I had wonderful doctors, people everywhere praying for me, my friends and family never gave up on me, please stay positive, I did for the most part I wasn't ready to go down for the count.

You can always vent to me
Teresa
Since 2001

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

Thanks for your reply to my post. I've actually had more bad news from the PET scan results, I have cancer in my throat as well as my lung, I was told the cancer in my throat is the primary one and the lung is secondary. Not sure what this means, do I have 2 cancers or did the throat metastasize to the lung?? Too many questions and not enough answers at this time. I have an appointment on Monday with an ENT, hopefully he can give me some answers as I don't see the oncologist until Thursday. The waiting is the hardest - gives me too much time to think :)

I'm doing pretty good emotionally right now considering all the bad news I've received lately. I fully intend to tell my whole family everything but I don't want to scare them with my thoughts right now until I get some definite answers about both cancers. Once I have more answers they will know everything that I know. Like most people I was thinking of all the worst case scenarios out of fear and ignorance. As it began to sink in I began to realize that there is still hope, as long as I wake up each morning there is hope.

I have a great family who will be there for me, I just hate to see them hurting like this. They would all do anything for me and (like most families) would do anything they could if they could make this all go away. I'm going to be fine, it's just some days I'm a little wimpier than other days and just need to vent to relieve some of the stress without taking it out on my family.

I want to thank everyone for all their support and comments. Bless you all and I hope I can help some of you in the future. You're all a marvelous group of people!!

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