Linking you to resources and support in the lung cancer community!
Caregiver
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Replies to This Discussion
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Permalink Reply by AmyLCA on -
Hi KDD,
Sorry to hear about your dad's diagnosis. It's a shock whenever it happens, but it also sounds like you've had to serve the role of sole caregiver at far too young an age, first with the stroke and then this.
Take a deep breath, and the first thing I will tell you is that you will get through this. It might not be fun or easy, but you will get through it. Already you are writing like you know the questions to ask and how to get the answers, so you are way ahead of a lot of people in similar situations.
You ask: how are you supposed to ensure he gets the best treatment possible? Assuming that you and your dad live close to each other, there's an excellent cancer center not far away from you in New Brunswick. It's the Cancer Institute of New Jersey. They are a highly ranked cancer center and they have a designated lung cancer program. The phone number to the center is 732-235-7802. I wouldn't necessarily call them before you have the Friday appointment, but just keep them in mind as an option for a second opinion.
But in a more general sense, the best way to ensure that he gets the best care is to ask a lot of questions. Make sure you (and he)understand everything that is going on. Get copies of all of his reports and scans. Ask who you can call in the oncologist's office if you have questions. Ask about clinical trial options (experimental treatments).
Let us know how things go on Friday. You will get a lot more information at that point and maybe even a game plan.
Hang in there,
Amy
PS - I switched your post to the Caregiver Corner. Hope you don't mind!
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Permalink Reply by KDDHope on -
Thank you, I have already called the Cancer Institute of NJ. Both his pulmonologist and primary care are in the opinion that you go to the Cancer Institute when the first round of treatment doesn't work and you need more aggressive treatment. At the moment I don't know if I agree with that, but in the meantime I have to get his medical records together but do plan to see what the Cancer Institute has to say. The oncologist is in a private pratice and I feel like you get the more one on one attention than dealing with someone as big as the Cancer Institute but I could be wrong. I've gone to the extreme of calling Deborah (that is where my grandfather was treated for lung cancer 20+ years ago) to Sloan in order to see what options I have. All at the same time I am trying to finish my master's degree. Ironically, I am taking a class "crisis management" and have used some of those steps to get myself focused because I have been an emotional basket case lately. I feel like I am dealing with a crisis, but I also do know we will get through it. It just is so overwhelming and I just wonder how I am going to be able to manage everything. I'm freaking out that I am missing something whether its questions to ask, treatment options etc. Earlier today I was thinking I would be watching my father die a slow painful death but then I stumbled upon this website and from reading some of these posts I truly see that there is hope for some positive things.
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Permalink Reply by AmyLCA on
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Hi KDD,
For what it's worth, I was working full time and doing grad school part time while my mom was sick. Professors and my employer were all very flexible when I needed to re-schedule exams or take time off. I wasn't going to her appointments with her, but I still played a pretty major caregiver role while trying to do lots of other things.
Try to not panic until you have gone to the appt. Friday. You will totally miss something the first time around - anyone would. That's why you take notes and then call the doctor or nurse or your point of contact to clarify things later.
There's just no possible way you will be able to anticipate all the questions before the meeting. In addition, some of the questions as well as answers will vary depending on what they tell you.
Second opinions can be good in many situations, but sometimes they aren't necessary. There are definitely some standard protocols depending on what the exact diagnosis is. One thing I would say is that it ALWAYS makes sense to see an oncologist who specializes in lung cancer. Even if it isn't the only cancer they specialize in, you want lung cancer to be a specialty area. You want them to treat a lot of lung cancer patients and be familiar with all of the most up-to-date treatment options. Ask the oncologist what percentage of his/her patients are lung cancer patients. That may help give you a sense of his/her experience. Also, if you can find out what hospital the oncologist is associated with, I can tell you if the hospital has a lung cancer team. Many hospitals are developing multidisciplinary teams these days, which seems to be improving patient outcome.
Hang in there!
Amy
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Permalink Reply by KDDHope on
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The oncologist is affiliated with Robert Wood Johnson, St Peter's and Princeton Hospital. However I would be aiming for any treatment or procedures to be done at Robert Wood.
Thank you so much for all your information. I was a basket case of emotions a few hours ago, but I am so glad I have reached out to this site it has begun to calm some of my nerves and uncertainties
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Permalink Reply by GADawg/MOD on -
Hi there, I'm sorry about your dad. I really feel for you, because I'm in a similar situation. I was 29 when my mom was diagnosed 5 years ago with stage IV LC. It SUCKS to be so young and be a caregiver. It's hard to be a caregiver at any age, but when you're this young, you can't go to your peers for caregiver support. It's not like you're in your 50s and all your friends are also dealing with ageing parents. I found this to be really hard at first. I started seeing a therapist who specializes in grief and illnesses, and that's been a HUGE support. This site is also another source of support, as well as LCA's phone buddy program (of which I volunteer). There are also probably local support groups depending on where you live for young caregivers. All I can say is, being a caregiver is not fun, it's not easy, but it can be rewarding. And there will be many times when you will neglect YOUR life. I did this for many years- putting my life on hold for my mom, and I really did myself a disservice, not getting on with my life in my 30s. Just hang in there, remember you're doing the right thing by your dad, and try to make time for YOU and don't neglect your own life too much.
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Permalink Reply by KDDHope on
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Thank you GADawg for your advice. I have really been trying to keep time for myself, but my dad is always on my mind. At least at this point I can speak without tears rolling down my face. So I guess in the end, I am making some headway in coping with this. I now have the confirmation it is cancer so now I feel as though I am in fight status. Finding the best doctors, treatment, managing the side effects, etc.
While I haven't been on in a few days, we have gone for two opinions. We went to one oncologist and he told us that he was stage IV and chemo was the only option. Then we went to another oncologist and he says it is 3B and wants to treat with chemo and radiation. My father's case was presented before some cancer board and now the first oncologist agrees with radiation as well. They want to begin treatment TOMORROW! I am freaking out! We have postponed it to Monday so that we can go to the cancer seminar that the dr. office offers. So Monday is the big day.
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Permalink Reply by GADawg/MOD on
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Hi KDD,
I know, your dad is always on your mind. I didn't mean to insinuate that he wouldn't be, because literally since the day I heard my mom's diagnosis, there has not been one day that's gone by where I didn't think about her and cancer. It's really hard. Right now, you're at the beginning of your journey, in fight mode. I totally understand where you are right now. I just know as this goes on (5 1/2 years at this point for me), it gets harder and harder as a caregiver to not lose some of "you." Just be mindful of that. Especially at our age when our adult lives should be beginning.
It sounds like you are totally on the right track- you got a second opinion, and treatment is starting soon. You're way ahead just by getting a second opinion. Try not to be TOO nervous on Monday- the radiation won't hurt your dad at all and it will be really quick. The chemo- you never know how someone will react, but my mom did really well with hers- no throwing up or anything like that, although she did have diarrhea for a few days about a week after. One thing to remember is chemo is cumulative- my mom had no side effects for the first few treatments and then it hit her. And by the end she would lay on the couch and cry, she was so tired. But it's also cyclical, and you'll be able to predict the good days and bad. It's manageable. I remember sitting there during her first chemo, thinking it was poison about to enter her body and being so scared- but then I decided to think of the chemo as medicine that was helping her, like a life-giving serum, and I thought "bring it on!" You'll get through Monday, just hang in there! :)
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Permalink Reply by KDDHope on
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Gadawg, I didn't mean to sound as if you were insinuating anything. Everytime I am not at my father's he is on my mind. It has gotten easier, but I assume as soon as treatment begins those feelings will return. I can't tell you how much I appreciate your advice as I feel you have some what lived what I am about to experience. I think to myself how in god's name am I going to mange this and get my family through this. I felt like I was at my prime in my life, just bought my first house, serious relationship, good career, etc and now this horrific news is settling in and my life is all about to change. They are putting my dad on two drugs cisplatin and docetaxel. I am hoping ( I have my fingers and toes crossed) he can manage the chemo. I will probably be the same way you were the first round. Good way to look at it, as the drugs are helping him. I will remember your comments come Monday!
By the way how is your mom doing these days?
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Permalink Reply by GADawg/MOD on
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Hey KDD,
Oh, I know, your dad is on your mind, whether at his side or not! I have lived what you are about to go through, and that's the beauty of this site. It wasn't around when my mom was diagnosed, I'm so glad we have it now. At the time of my mom's diagnosis, I had been married about a year, just moved to a brand new city 10 hours away, and was just starting my career. Oh, how things changed. You can't stop the change, but just don't let cancer consume you like I did. I put my career on hold and at times my marriage, and that really wasn't good or fair, to anyone, especially me and my husband. I'm starting to get perspective these days, but it's hard. I love my mom so much, and I can tell the love you have for your dad. I've always been kind of a parent to my parents (weird dynamic, I know) and things just unfolded where I was in charge, all the time, 24-7. And no one can bear that for too long.
My mom was on carboplatin and taxol, so basically the same thing as your dad. Just think of it as helping him, and when side effects hit, remember they're manageable and can be dealt with. Not that it makes it fun or easy on you or your dad, but to fight the beast that is cancer, you gotta hit it hard!
My mom is ok, thanks for asking. 2 years ago she had disastrous side effects from her 3rd gamma knife to the brain- she got radiation-induced dementia. And myopathy from long-term steroid use to control the swelling in her brain, so she's in a wheelchair now. Last year was tough, but now I'm adjusted to our "new normal." The goalpost is always moving in cancer. 2 years ago when my mom could no longer walk, or dial a phone, or remember my bday, I was destroyed. But today, I'm happy I can wheel her around the mall in her chair, and happy that we can watch I love Lucy together. Happy for the little things. All things considered, she's doing well. Her last scans were stable, and that's all you can ask for, really. No news is good news!
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Permalink Reply by KDDHope on
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GADawg- So sorry it took me so long to respond. My dad has started chemo...they had to change drugs because his kidney function was a bit elevated so he is now on carboplatin and doxecteal. So far so good, he has absolutely no symptoms and actually has more energy now than he had prior to chemo (he was vacuuming our pool the day after). He did get a fungal infection from advair so he is on an antibiotic. Round 2 start starts June 27 and we go for bloodwork on Monday. I just hope that goes well. I am so grateful that so far he is handling the chemo well. When we walked into the "chemo room" I thought to myself how are we going to get through this, it was a bit difficult to deal with in the beginning, but then I thought back to your post! Thank you so much! It really helped me get through the day.
I am glad to hear your mom is doing ok. I am terribly sorry to hear about what has happened to her, but I will keep you and your family especially mom in my prayers! All I do now is pray :)
Hope you have a wonderful weekend!
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Permalink Reply by GADawg/MOD on
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Hi KDD,
I'm glad to hear things are going well with your Dad. Just remember chemo is cumulative- your Dad may sail through the first few rounds of chemo before it really hits him. Just don't want you to be surprised a few months down the road and start to despair. I'm sure he'll handle everything like a champ. Keep me posted on how things go on the 27th. Hang in there! :)
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Permalink Reply by KDDHope on
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Hi GADawg- My dad completed round 2 of chemo. Still no major symptoms, he lost his taste buds for a few days, but they are now back. He is a bit tired but not to a point he can not function. He has not lost his hair. I have noticed his cough has changed dramatically. Use to be a very muscousy cough, now its a dry cough. Not bothersome but I notice it. His wheezing has gone down. He is set to have a PET scan next Wednesday and then we meet with the oncologist and radiation oncologist to determine if radiation will proceed. I hope and pray my dad is responding to treatment and he can start the radiation. I sometimes think is this stuff working, since he doesn't seem to be symptomatic to the treatment. I guess I am use to hear the bad that I am expecting the worse for him! I have attempted to adjust my thought process and just hope some good news comes our way next week! Fingers and toes crossed!
I hope all is well with your mom!
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