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Decision making.

starrymims's picture
starrymims
Posts: 5
Joined: May 2009

My mom has squamous cell cancer type 3. I don't actually know anything about what's going on, except that the doctors always seem to give us the run around and don't answer our questions.

Right now, she is undergoing radiation as part of a 25 treatment course. She started one treatment of chemotherapy and is on a three week cycle. She had a port put in to make the treatments easier and to not ruin her veins.

Well, treatment has been really tough on her, and we knew it would be because of a previous surgery that made the part of her body susceptible. But the doctor's convinced us that things would be fine. Things aren't fine, she's really weak and tired and scared and there doesn't seem to be much help.

I wonder if it's too late for a second opinion, maybe a more responsive set of doctors?

My mom seems to be switching gears, she no longer wants the chemo, she's leaning towards dying.

I don't know, does anyone have any advice for the situation? I'm really confused and don't know how to help her, all of this is so over my head.

andmegab
Posts: 5
Joined: May 2009

if you arent happy with the docs, its NEVER too late to get a second opinion. you have questions, you deserve answers. depression with everything she is going thru is pretty normal, and the docs are pretty used to helping the patients out with that to a degree. again, talk to the docs, let em know whats going on. there is sooooo very much they can do to help now days that they couldnt do even just a few short years ago.

ill be keeping you all in my prayers,

god bless,
deb

starrymims's picture
starrymims
Posts: 5
Joined: May 2009

Well, last night after I posted my mom got really sick and we had to rush her to the emergency room in an ambulance. She stopped breathing. She's in the hospital with my dad by her side. I'm at home, alone (except the dogs) and I don't know. I'm so scared.

My dad and I talked about it, and we really want to do the second opinion, but here's the thing, my mom is now refusing to do chemotherapy at all. She's also saying that if she gets any worse or doesn't get better, that she won't do the rest of the radiation.

I'm all for standing behind her, as it's her choice.

But she's got a lot of anger for what's going on, with the doctors and everything going so awful. I don't know what to do.

I mean, is it too late to find another doctor to talk to her? I mean, maybe not to offer a care alternative, but to at least answer the questions that nobody has been answering?

I don't know, I've just got so many questions too, but don't know who to turn to. Her doctors aren't much help, they just say, "Okay, okay, okay." "It'll be fine."

HonuBeginnings
Posts: 8
Joined: Mar 2009

My mom went to her medical oncologist today and they gave her the chemo option. She is a very holistic person and wants to do her treatment that way. She just went through whole brain radiation which kicked her @$$. She got sick in the middle with the flu that was going around. So she says she doesn't want chemo because if she only has a few months she wants to enjoy those last few months instead of being constantly sick. The doc gave her a choice of Carboplatin or Pemetrexed. He said one is very strong but the other is mild with fewer side effects. After 2 hours on the phone with her I finally convinced her to do the chemo, knowing she can quit at any time. Just having this option made her feel better. She hates her medical oncologist but loves her radiation oncologist. Her med.Onc doesn't even say Hello or goodbye when she meets with him. To her this is a major thing. She is from Argentina and is very old school about certain things so courtesy is a big thing for her. She likes her rad onc because he simplifies things he tells her. She doesn't grasp the english language very well, so when people speak big words to her she is uncomfortable. These small things can help a person make those decisions easier if they just showed a little understanding towards their patients. Once I explained the treatment in her terms she was happy. Unfortunately this doctor is the only one in the town they live in. She has no other option. Maybe your mom just doesn't feel she is being respected by the doctor. This can hinder the positive atmosphere a cancer patient needs for treatment to go well. Cancer patients need to feel their needs are being met and that is not only getting the chemo or radiation. They need to feel like they can trust their doctors, and that their doctors care for them. Maybe you can find your mother someone to be there with her when she is getting treatment. A companion to help her understand every step of her treatment. The American Cancer society has volunteers and they are so nice. They know all the medical jargon and can help her just vent when she feels frustrated. Hopefully this helps you. I am in the same situation you are. Any time you need to talk my email is taniataylor@hotmail.com

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Just as a head's up, honu, I would strongly advise against offering your personal email here unless you are willing to start getting email from all kinds of weirdos (and they do come prowling in here, believe me).

Your advice re ACS, by the way, is right on. I would also suggest that most hospitals offer social workers of one sort or another who may be able to talk to your moms about what is going on if the doctors are not amenable.

I understand, too, firsthand, that pain management is critical during this crucial time. We are weakest, most vulnerable to giving in, when we find the pain least tolerable. Seek pain medications and insist that mom use them as prescribed. Seek anti-nausea medications that work for mom (there are a number, and they don't all work for everybody, just as there are a lot of pain meds which also don't work for everybody). This, to me, is VITAL, of utmost importance: we give in, we give up, when we are in pain!

More than any doctor's bedside manner (or lack thereof) is the pain, in my opinion. Yes, a doctor's attitude and manner certainly can help, but even when it is less than tactful, it matters less than suffering.

I would worry more about this, pain management, than I would about the doctor's manner.

Best wishes to both of your moms and to their entire families.

Take care,

Joe

starrymims's picture
starrymims
Posts: 5
Joined: May 2009

My mom's on a very good pain management regiment now. Thank you. It really was a huge hurdle. The nausea medication is a little harder to work with. Her medical coverage is refusing to help with the payment of those pills. It's been a nightmare in that aspect.

It's frustrating because I've never been so scared in my life to see her so weak. A friend said that the treatment could dehydrate to the point she could pass away. I don't know what to think.

She said she's going to finish her radiation, if she can and afterwards just look towards hospice care.

It's so hard because before we were focused on living and now it seems like the opposite. And that doesn't really seem right.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Hydration IS critical! But it should not be a reason for death...in a worst case scenario, your mom can be taken into the ER and put on an IV solution to restore hydration. To avoid that, she should consumiong as much water as she can daily. My oncologist, by the way, advised me that the 'power' drinks I was swearing by were NOT necessarily good for hydration, as they leeched the body of some key elements. He recommended seltzer water as the best solution.

As for paying for meds, if financing is a problem, it is possible at times to talk a medical company itself into providing the meds free of charge or at reduced costs. Most have programs in place for this purpose.

Rather than looking toward hospice care, perhaps mom can look instead toward a respite from treatment to restore her health before moving into the next phase...there is no law against taking a break, and most oncologists will understand a need to do so when warranted by weaknesxs and fatigue.

Best wishes.

Take care,

Joe

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