Jump to content

Should we ask for this???? Bone Scan Confusion, update


ztweb

Recommended Posts

SEE MY POST BELOW

My dad has his first 3 month follow up (November) after being given the blessing of remission. We haven't been given the schedule yet, but Mom didn't think that a bone scan was on the list. Should we be asking for this?

He never had mets, had PCI, and responded fabulously to chemo and lung radiation. It seems to me that we want to find IT if IT is in there ANYWHERE, but maybe I am jumping the gun???? What are your thoughts?

Peace to all.

Jen

Link to comment
Share on other sites

YES. If you are familiar with my dad's medical story at all, I firmly believe he would have lived longer, perhaps even be alive still, had we asked for a bone scan sooner.

I don't know why they make us "ask" first- what about those who don't know to ask?

And it's crap that they wait for "symptoms" because usually then it is too late!

OK...getting a bit angry...sorry! I just feel very strongly about being proactive every way you can and there is residual guilt on my part for not making sure he has a bone scan before it was too late.

Hugs,

Link to comment
Share on other sites

You must advocate your Own health Care. Your Doctor has many patients to take care of, But you only have that one Dr. to take care of you. ASK Always.

Link to comment
Share on other sites

Jen,

Since my Dad was diagnosed, I've done a tremendous amount of research on small cell. I'm not married and he's been my rock for forty years and I'm not ready to let him go.

I've been to almost every oncologist meeting with him and his oncologist has told me it doesn't matter when a recurrence is found for sclc, treatment becomes palliative. After 15 months of remission, my Dad has had a recurrence and they now consider him a palliative patient, yet we hope he can achieve a second remission. His onc told me it doesn't matter how early his relapse is caught, small cell is considered terminal upon recurrence.

I don't know if early recognition of a relapse increases survival rates or prolongs life. I hope it does but all the research I've done indicates it doesn't. If small cell returns the treatment is systemic and would treat all mets including bone. If your dad has pain in his bones, radiation can be used to relieve symptoms.

Wishing the best for your Dad.

Link to comment
Share on other sites

Re-read cindyRNs profile. She had a recurrence and has had a long remission and is cancer free today. there are also members of the mn support group who are, I believe, 5 years out and cancer free as well after having recurrence.

I know that the statistics are extremely outdated and do not reflect patients who are aggressive and proactive and preventative in their treatment.

Treating lung cancer as if it were a chronic disease (finding and treating things as they arise) as opposed to a terminal death sentence makes a huge difference.

Keep us posted and prayers continue for your dad.

Link to comment
Share on other sites

Jen,

My husbands' onc. didn't run a bone scan, when he went to his new onc. I asked and he said yes, fortunately it was good.

The one thing I will tell you, and everyone else, is that you are only as good as the day you take any test. Meaning that maybe on the day of whatever test you're ok, but who is to say the next day something occurs.

But ask for the test. In fact, insist upon it. I wish you all the best....

Grace

Link to comment
Share on other sites

Please ask for a bone scan. My dad was in remission for 3.5 weeks when he got a nasty headache. Turns out he had 4 nearly-undetectable lesions on his brain. Treatment of that led to a whole body scan...turns out he has a small lesion on his hip bone as well. So they're treating that too. He was having a little bit of hip pain too. Dad must be hyper-sensitive as the lesions are all so minuscule...but they were detectible via scan. Please ask your dads doctors to order one. Better to be safe than sorry. At least then you'll all sleep a little better.

His team of doctors believes that cancer (even SCLC) can be a manageable, chronic disease. There is so much out there to treat it these days, that they are just going to keep trying. His radiation oncologist was telling my family that it is the National Institute of Health’s goal to treat cancer as a manageable, chronic disease by 2015 (or something like that) but many proactive doctors see it that way already. Just keep fighting, is all they can say. Be aggressive. If you need or want something, or if things seem a bit off, ask for the help / scans / etc.. Knowing is better than wondering, no matter what the outcome. As one of them put it...Once you've been down this road, ignorance is no longer bliss.

Link to comment
Share on other sites

Bump, bump, bump!

We got everything for dad's first-after-remission appointment at the end of November. It does not include a bone scan, but a CT. I called the onc to ask her about it, and she made it seem extremely unnecessary. She has always been VERY PROACTIVE, so this came as a shock to me because of the words of advice you all gave to me. She told me that it is far more important to assess any patterns of "feeling" my dad might have, and then seek scans or treatments at that point. She told me that if/once cancer returns, then it is considered uncurable. Is this why they don't scan for it, because you don't have a chance then?

I talked to mom and dad about this, and will send an email message to the rest of my family today telling them what doc and I talked about, because she said that if, as a family, we decide we want a scan, she would order it, but that we needed to be aware of the "can of worms" we might be opening...what the heck does this mean?

Exhausted,

Jen

Link to comment
Share on other sites

Jen.

I don't know much about SCLC, but that sounds like a huge load of crap to me. From what I've seen from folks here--you CAN fight even if it's a recurrence... and you WANT TO KNOW as early as possible if you need to.

If this is their attitude about a recurrence... well. Maybe you need to sit down and have a heart-to-heart with the doc. and tell her that YOU GUYS don't give up that easy and it's too bad that SHE DOES but you guys are going to fight. That is, of course, after making sure that is your Dad's feeling as well.

Link to comment
Share on other sites

Oh my gosh Jen:

This is the kinda crap I swallowed with my Mom's onc. and her internist (because they were supposed to be the "best" in Canada for lung cancer), and look where I am now. Don't swallow it and do what your gut is obviously telling you to do! I sure wish I had.

As for your Dad's onc......GRRRRRR!!!! :x

Prayers for you and your family,

Deb

Link to comment
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.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.