Introduction for myself

[carolnic]

Hello, my name is Lynn, you see me as carolnic.  I’m looking for information and support, My Mom, 83 years young on May 25, recently diagnosed with Squamous cell carcinoma, Stage 3B lung cancer, who has refused treatment and signed with Hospice.

[Tom Galli]

Lynn,

Welcome here!

I was also diagnosed with Squamous cell at Stage IIIB but I was 53 at the time and otherwise in good health. Lung cancer treatment is a slug at any age. That is not to say a person in their 80's cannot tolerate it, but often older folks have complicating medical problems. 

Does you mom in fact have other medical issues? Was she offered a treatment plan and if so what was the plan? 

Here is some information about Lung Cancer Staging and Squamous Cell lung cancer. You might review these sources and generally tell us about your mom's medical health and we'll be happy to entertain your questions about treatment, hospice or anything else.

Stay the course.

Tom

[carolnic]

Hi Tom, 

Nice to meet you! I’m so Thankful to stumble across this group! My mom was just diagnosed the week before her 83rd birthday on 5/25/21, and was a shock to her myself and older sister, Nancy. She had laryngitis for about 6 weeks, and was sent to an ENT, during their exam they found a mass on her larynx, (they didn’t share that that information with her), but told her they wanted her to have a CT with contrast of the chest and neck, and an ultrasound. ...The ENT called her 2 days later (a PA) and rudely told her she need not come back, that she had a 7.9?cm mass on her right lung, into lymph nodes, and throat. (What a terrible phone call to get, when she had no clue!) She was immediately sent to an oncologist and had Bronchoscopy, and biopsy. Plus tons of blood work.  The results NSCLC, Squamous cell carcinoma, Stage 3. She was going to have treatment, chemo and radiation, but after further consultations with her oncologist and my older sister Nancy, the oncologist told them that with treatment, her life would be only prolonged by about 6 months. My mom also has heart problems and stenosis of the spine and cannot feel her feet and lower legs, and can barely walk anymore. The stenosis is really really bad, they wanted her to have surgery, but she also is losing blood somewhere and has to get blood transfusions quite often, so she decided against treatment, because of fear of feeling worse from chemo and radiation for the rest of her life. She said with everything she has going against her, she would rather be in the care of hospice at her home. 
I already see a rapid decline in my mother, she has zero energy, very shaky, and fatigued, of course depressed, zero appetite( and let me tell you, my mom has always loved food) she has lost quite a bit of weight, and forces herself to eat at least an English muffin or a couple pieces of toast with peanut butter.  She sleeps on and off most of the day while sitting in her recliner.  I just don’t know what to expect or how fast this will progress without treatment? I have certainly seen big changes in her in just the last month, but is it her cancer doing this, or the depression? Maybe both? She’s all I have left! So sad and scary! I hope this answers some of your questions and gives you all a better idea about her health. 

[Tom Galli]

Lynn,

Unfortunately, the information you provided about your mom’s health problems validates her hospice decision. 

Energy decline, appetite loss and depression are all associated with extensive lung cancer. Hospice staff ought to intercede here. Are these symptoms being reported (noticed) by hospice staff? It would be most unusual if they were not noted. 

I once had a time during treatment when we looked into a hospice provider. That research and all my experience as a survivor suggests that hospice treatment normally engages ahead of end-stage symptoms. Have they briefed you?

What can you expect? Things will proceed rapidly and hospice will likely start administering narcotic medication to ward off your mom’s pain and ease her fear. Gather your family close and recall happy family memories. Remind her of your gratitude for her parental sacrifice. Hold her close. 

Stay the course. 

Tom

[Judy M2]

I'm sorry about your mom, Lynn. I agree with Tom's great advice. Treatments would probably be too hard on your mom considering her overall health. Definitely work with hospice to make your mom comfortable, and use their resources to help you as your mom's caregiver. 

By the way, that phone call from the ENT's PA was completely unacceptable, but you already know that.

I know how hard it is to go through both experiences: patient and caregiver. We are here for you if you need our support. 

[LouT]

Lynn,

I'm sorry to hear about what your Mom is going through.  You've already gotten great feedback from Tom and there is little I can add to what he had to say, except this;  I think every person can consider what is best for them in the throes of a cancer diagnosis.  Your Mom is likely right that chemo and radiation could surely lessen her quality of life even more than her present conditions are doing.  She is opting for feeling better than the side-effects until the end and I understand her decision.  My Mom underwent chemo and radiation in her late 70's and it was brutal on her.  Eventually it would result in numerous bouts of anemia and pneumonia, finally ending with a bout of pneumonia that she couldn't overcome.  I felt bad for her the last year of her life.  In her case, it was her choice to want to go through the treatment and I respect that, but can fully understand your Mom's decision to get comfort care and Hospice.  I send all good thoughts and prayers to you, your Mom and family.

Lou

[carolnic]

8 hours ago, Judy M2 said:

I'm sorry about your mom, Lynn. I agree with Tom's great advice. Treatments would probably be too hard on your mom considering her overall health. Definitely work with hospice to make your mom comfortable, and use their resources to help you as your mom's caregiver. 

By the way, that phone call from the ENT's PA was completely unacceptable, but you already know that.

I know how hard it is to go through both experiences: patient and caregiver. We are here for you if you need our support. 

Thank you very much Judy! I agree, and am so disgusted with that PA and the ENT Ofiice. My sister said it’s just every day business with them, but I totally disagree! I worked in healthcare for about 15 years, as an aide, nursing homes and hospitals, and I truly believe in compassion, if you’re working in any type of health care and you look at cancer and masses, and tumors, etc.. as just another part of your daily business without compassion, you have no business working in that field.  I mean, I live an hour and 10 minutes from my mom, and my only other sister lives in New Jersey. How terrible to get that kind of compassionless phone call and be completely alone! 

[carolnic]

 

Thank you very much Judy! I agree, and am sodisgusted with that PA and the ENT Ofiice. My sister said it’s just every day business with them, but I totally disagree! I worked in healthcare for about 15 years, as an aide, nursing homes and hospitals, and I truly believe in compassion, if you’re working in any type of health care and you look at cancer and masses, and tumors, etc.. as just another part of your daily business without compassion, you have no business working in that field.  I mean, I live an hour and 10 minutes from my mom, and my only other sister lives in New Jersey. How terrible to get that kind of compassionless phone call and be completely alone! 

[carolnic]

1 hour ago, LouT said:

Lynn,

I'm sorry to hear about what your Mom is going through.  You've already gotten great feedback from Tom and there is little I can add to what he had to say, except this;  I think every person can consider what is best for them in the throes of a cancer diagnosis.  Your Mom is likely right that chemo and radiation could surely lessen her quality of life even more than her present conditions are doing.  She is opting for feeling better than the side-effects until the end and I understand her decision.  My Mom underwent chemo and radiation in her late 70's and it was brutal on her.  Eventually it would result in numerous bouts of anemia and pneumonia, finally ending with a bout of pneumonia that she couldn't overcome.  I felt bad for her the last year of her life.  In her case, it was her choice to want to go through the treatment and I respect that, but can fully understand your Mom's decision to get comfort care and Hospice.  I send all good thoughts and prayers to you, your Mom and family.

Lou

Thank you Lou! I totally understand and respect my mom’s decision, it’s so hard to see her I’ll and with absolutely no energy. My mom has always had a ton of energy and always did so much, now it’s all she can do to walk into the kitchen! She has declined so incredibly fast, it’s very scary. I’m thinking of signing up for FMLA, the soonest I can get approved is on July 5th,  I don’t think I need to be off work everyday yet, but, intermittently if my mom needs me would be great. I work at Amazon in the warehouse and we have been working a lot of overtime for the past 6 weeks, and it’s mandatory. So, FMLA would be a great relief for me, I live an hour and 10 minutes from her, and my only sibling, my sister lives over 6 hours away in New Jersey.