Jump to content
Sign in to follow this  
Gwen, Daddy's girl

Dad just Dxed, bad episode already

Recommended Posts

A shadow was just found on my Dad's lung 2 weeks ago. A PET scan is scheduled for Tuesday. Just last Thursday he was admitted to the hospital with severe general misarable pain and refusal to eat.

The only thing found to be wrong Urinary tract infection and low blood sodium. It took awhile.... With IV antibiotics, morphine, fluid restriction and IV saline he can now tolerate life.

It seems that once the Drs. were told of the cancer their opinion was.."well that happens". Well last week he walked 2 or 3 miles daily, played bridge (quite well) and ate heartily. They are thinking of sending him home with little preparation. He can't walk or even sit up these past days. Mom is a capable lady, but this is a new planet.

My husband and I live 1 1/2 drive away and are raising 2 children with disablities. A 13 year old son with Down syndrome and an 11 year old son with severe cerebral palsy. I can go there alot to help , but I can not make it to them everyday.

Share this post


Link to post
Share on other sites

Gwen...oh I am so sorry. You have your hands so full right now. Life is such a roller coaster of ups and downs, and things that turn our lives inside out. You have come to the right place to get support, love, and caring advice.

I am a firm believer in second opinions, and I support them. It is not about "not believing" in what you have, but in getting the most information that you can.

You are so right about "different planet" and your mom has alot on her shoulders too. Get through this initial stage of information gathering, and know there are organizations out there to help. I know there is someone here on the board that knows more aobut this than I do, and you will surely get some good information.

God bless you. I pray for you, your dad, your family, and your continued strength through this difficult time.

Jen

Share this post


Link to post
Share on other sites

Gwen,

You certainly do have your hands full and I personally know how frustrating it is that once a Dr./hospital hears of a LC diagnosis, everything is chalked up to that. It is not the case. When my mom was in a coma like state for 3 days, everyone kept saying "Well, you know this the brain mets"-well dontcha know it was a UTI that made her system toxic? Do you have any siblings/aunts/uncles/anyone who can go to the appointments/keep records? We can try to help you if you know the facts. Just an offer..

Hang in there and know we are here. Prayers for all of you.

Share this post


Link to post
Share on other sites

Hello Gwen and welcome.

You certainly have a lot to deal with and I am glad you found this site. You can see already from the replies you have gotten this is a wonderful and caring group of people. Please ask any questions you have, and you will have many, as there is bound to be someone here that can either answer you or point you in the right direction.

I do believe strongly in getting a 2nd, 3rd or more, opinion. As it was already pointed out, it is not because of not believing the dx, but to see what options are out there and what the BEST line of treatment is.

Please know you and your family are in my thoughts and prayers and feel free to pm me if you need to vent...

Hugs

Chris

Share this post


Link to post
Share on other sites

Welcome,

I agree with a second opinion, perhaps from a comprehensice cancer hospital or a hospital with lung cancer specialists.

There are options today for people with lung cancer and your dad needs to be made aware of what is available to him in terms of treating this disease.

Lung Cancer doesn't have to be a death sentence. People DO SURVIVE. Knowledge is the key and when your armed with the facts, all the treatment options, the latest in technology and clinical studies, you/your dad can be your own best advocate to ensure that your medical team is supporting you.

Sending positive thoughts for you guys. Hoping your dad feels some relief soon and that you guys get a good game plan in place.

Keep us posted please!

Share this post


Link to post
Share on other sites

Welcome to the site, Gwen. If your dad is still in the hospital, there should be a social worker that's responsible for seeing to it that discharge goes smoothly -- if your dad is still having troubles that the family isn't sure they can handle well once he comes home, that social worker ought to be helping the family prepare for life after discharge: lists of community resources for help, all necessary immediate followup doc. appts./tests scheduled, etc. etc.

That's what they "ought" to be doing: unfortunately, that often doesn't happen without family prodding/advocacy for their (and patient) needs.

LC can be managed and often requires second+ opinions (depending on how your dad/family finds he is being treated by the medical team), as others have already mentioned. A lot of us have faced the frustration of "blanket assumptions" being made -- an LC diagnosis is only one of them....I've run across age-ism assumptions as well (both my parents were hale and hearty upon their dxs, but when the docs. see fragile, they assume it's appropriate for their age....ugh!!!). Advocacy on those issues becomes important as well to help our parents regain as much quality of life back as they were used to -- only we know what that really was for them.

Keep us posted -- we are here to help.

Linda

Share this post


Link to post
Share on other sites

Thank you for your reassurance and suggestions.

The social worker is someone my Mom and I know about and neither of us remembered. Thanx for the reminder.

Dad is being moved today to Walter Reed hospital in Washington DC. I think that is good. They will do a pet scan there. But Mom is overwhelmed. She was not ready for this change.

Share this post


Link to post
Share on other sites

Gwen -

The beginning is so very hard. Take a breath and give this some time to sink in -- and se what the plan is. You will feel a bit more in control once you guys have a plan. Women like you always inspire me so much...you must be a great mom to those beautiful kids.

I am sorry that you had to find us, but am glad that we will be able to help you through this journey.

Holly

Share this post


Link to post
Share on other sites

I just want to welcome you to the group Gwen,

I am so sorry to hear about your dad, and sorry you have a cause to find us. But I'm glad you did, as there are so many people here that are informative, caring and compassionate.

It has been my experience unfortunately that once you have LC, everything else is insignificate in the eyes of doctors. There have been at least a half a dozen times where I've taken my husband in for a particular pain or problem (including some recent swelling issues), and when they determine it isn't cancer caused they send him home with no treatment or remedy. It's like "well, it's not the cancer so it's ok" It is so frustrating as all you want is something to make them feel better.

I will keep him in my prayers

Carleen

Share this post


Link to post
Share on other sites

I know your fear and uncertainty, but I can tell you that my mother is almost a six-year survivor of lung cancer! keep us posted. welcome, though I hate that you have to be here.

Share this post


Link to post
Share on other sites

Hi Gwen!

Welcome to the site. We certainly can understand your plight although your plate is incredibly full. Find that doctor that cares and you'll find that things will be much better. I went through 3 of them until I found the one I have now. :-)

Prayers are with you!

Darrell

Share this post


Link to post
Share on other sites

Welcome to the site. I am very sorry to hear about your father. Once you get the results of the PET scan let us know. We are here to help and listen.

Share this post


Link to post
Share on other sites

Welcome,

I'm sorry you have to deal with so much right now, it must feel overwhelming.

I agree that finding a doctor who cares is a big step in getting things done right.

Keep us posted on what is going on and we will be happy to help in whatever way we can.

Kathy

Share this post


Link to post
Share on other sites

I wish you and your family the best of luck. You have more than enough to take care of in a day, please don't forget to take care of yourself! Your no good to anyone if your running on fumes.

Share this post


Link to post
Share on other sites
They are thinking of sending him home with little preparation.

Gwen, ask to speak to a case manager or discharge planner at the hospital. If they do not have case managers, try phoning his insurer (Medicare does not have them, but if he has secondary insurance it may provide case management.) Sending people home without adequate preparation is a pervasive problem in hospitals; do not hesitate to speak your mind if he is not ready to go home. You do have a heaping plate of responsibilities, but I know you can do it. Best wishes to you, Teresa

Share this post


Link to post
Share on other sites

Hi, Gwen:

You do have a plate full for sure, but isn't it strange that we can always find a way to do more than we think we can? It would seem helpful if you could get the information from the doctors, find out the best treatments, maybe get a second opinion, and once all this is done, you can sort of regroup and have less on your plate to worry about, I hope. Your heart must be so raw right now, but just go for the information; even if it's just making phone calls. From what you said, your mother is not able to accomplish what needs to be done. Get her involved, taking care of your children or something, while you pursue getting the second opinion or just the treatment options. Hope she would do that so you can help more.

Love and prayers to you and your family

Barb

Share this post


Link to post
Share on other sites

Hi Gwen:

I am sorry you and your dad have to go through this now. Hopefully the PET scan will show reassuring news. If it is cancer, it may be operable or maybe the shadow does not show uptake. I hope the UTI is under control. That can be very debilating in itself.

Perhaps you can make arrangements with your dad to have copies of all his tests and medical information faxed to you. You would be able to track everything and perhaps we could help you. I wonder about the shadow. Was that on an x-ray? Has he had a cat scan? Maybe the PET scan scheduled for yesterday is actually a PET/CT scan

Don M

Share this post


Link to post
Share on other sites

Dad had his PET scan at Walter Reed. results were immediately available. (No waiting and worrying, what a relief.)There was a small mass and 2 nodes. Brochioscopy scheduled next. He can sit up some and is eating a little. He has lost a lot of weight, and was slender anyway.

There is a great team at Walter Reed. His pain is managed, OT and PT are involved, and better planning for going home.

He is suffering from intense itching. Blood acid is being tested. He has a lot stacked against him: rapid weight loss, low sodium, restricted fluids.

Share this post


Link to post
Share on other sites

Gwen:

It sounds like your dad is in good hands. The bronchoscopy, if positive, will allow the docs to see what kind of cancer your dad has. If it is not positive, they will just call it inconclusive or non diagnostic.

At least, it sounds like it is not widespread. I have heard of others who have had some node involvement and cancer limited to the lung, who have had radiation and chemo, followed by surgery. At this point, it sounds like your dad has a good shot at a cure, especially if he has enough strength to withstand treatment.

You might ask about image guided radiation therapy (IGRT). It is a targeted form of therapy that would be used to kill the malignancys only and would not affect the rest of the lung as much. This therapy is not as debilating as conventional radiation. I just finished 33 treatments of it and did pretty well. The thing is, I am not sure if it can be used on a tumor plus 2 involved nodes. It is worth looking into, I think, because it may be less taxing on your dad. Chemotherapy would probably come after the IGRT.

I just took a quick look at Walter reed Website and see that they don't have IGRT yet, but they do have Intensity Modulated Radiation Therapy (IMRT) whcih will also spare healthy lung tissue.

Don M

Share this post


Link to post
Share on other sites

Hi Gwen,

Welcome here and so sorry you had to find us, but as you can see from all the posts we are a very supportive family here.

I certainly symphaize with your horrible situation. You have so much to deal with and now this. You will find a way to cope.

I just read your update and I am so glad it is not as bad as you first thought. Now you could relax as he is in good hands. Once he starts treatment you all will feel so much better.

Keep us posted and know that we are always here for you. You do not have to go through this alone. We have all been there on way or another.

Maryanne :wink:

Maryanne

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Sign in to follow this  

×
×
  • Create New...