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Bone mets

jen2012
Posts: 1130
Joined: Aug 2012

So my husband had a bone biopsy 2 weeks ago.  I emailed the onc's nurse last week for results and she said she'd check with the doctor.  I emailed the doctor last night because I hadn't heard.  I just got a reply from the nurse saying the doctor would see him tomorrow when he's goes for blood work.  I know it's not good news.  I feel sick.   His birthday is Sunday.  I don't know if I should let him know about the email or just deal with it tomorrow.  I hate this.

Do bone mets not respond to chemo?  He's been doing foflox/avastin since mid-Sept.

Sundanceh's picture
Sundanceh
Posts: 4252
Joined: Jun 2009

The cancer is effective too.....I remember TaraHK talking about doing a combo of Folfiri + Folfox + Gemzar. 

I don't want to speak for her...I'll let her tell you about it...or pm TaraHK for a quicker response...she'll be a gold mine of information.

:)

And I guess the best course of action would be to Tell Him...the truth....just like you told us...doctor needs to see you after labwork. 

It may not be the news you want to hear...doctors are trained to have you come into the office when ever bad news needs to be delivered....

But, it may be, since he's in the building anyway....

It would be nice to have him hear things after his b'day...but I would probably be more pissed off about hearing it later than having my birthday...and then having my bubble popped. 

I'd rather know early...it might affect how I feel...but I would be affected anyway.

Throw it out there, Jen...you need this cleared off your conscience right now. 

This is hollow, but the fact is that his b'day is Sunday...come rain, hell, or high water...and it can't be changed.  Try and enjoy the day for what it is.

If cancer is there...it's there....if it's not...then good.  Unfortunately, the nurses can only give vague responses...and can build your hopes up or down.  Part of their job not to dx...

I'm so sorry the specter of cancer has threatened to show up for you guys b'day party...just don't set a place setting for him:)

Big hugs and we anxiously await what you find out.  We're here for you.

-Craig

Chelsea71
Posts: 1154
Joined: Sep 2012

I feel sick too. I'm really pissed, as well. You're family has been through so much crap. It's been one thing after another. The last thing you guys need is this extra challenge. I hate this disease.

Bone mets are treatable. Many people do quite well with bone mets. (and brain mets too).

Tell him. You can't carry the burden of knowing alone. It's too hard.

Life can really suck. Wish I was closer. Wish I could help. Really hope to hear the biopsy was negative. Maybe their policy is to give results in person only. I would be freaked out too. Waiting is so hard.

Chelsea

jen2012
Posts: 1130
Joined: Aug 2012

Thank you guys for your support and wisdom!  I guess I panicked too soon.  I emailed the nurse back this afternoon to let her know I was thinking it was bad and she emailed me to say "don't panic, I think everything is ok, she just knew you were coming in and that she'd talk to you then"   Then the doc just emailed me and said that there were no active cancer cells in the bone biopsy and we'd talk more tomorrow.  So I think that is good right??   I wish they'd be little more considerate of how nervous patients and their families are.  I imagine I'm not the only one that would panic, right?  

I'm relieved, but still think this all sucks big time.  Craig, I've looked over your other post quickly.  Have some work deadlines, but I plan to read through it more as soon as I get my work done.  I've wondered if this ever gets easier or if it's just always going to hang over our heads.  People keep asking when he's going to be done with treatment...uh maybe never.  Then they give you a strange look. 

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

I'm glad the nurse wash able to give you some encouraging news.. The waiting for results is nerve racking especially if we thin the news isn't good

Chelsea71
Posts: 1154
Joined: Sep 2012

Thank God!!!!!! I think everything is fine. Relatively speaking, of course.

I get that a lot too. When is Steve going to be all done? Of course, the answer is never. If he is very lucky he may get a short break. He'll be done when either the cancer or the chemo kills him. It is the reality of the situation. It goes back to Craigs post several weeks ago. Generally speaking, people don't get that it isn't always as easy as just doing chemo and then being done with it all. I do not think it will get easier. It will get harder. Chemo starts to take a toll, options run out....

Hope I was able to cheer you up. (Feeling negative after today's onc app. No more Avastin ever and no Erbitux cause he tested positive for the K RAS mutation. Am feeling like his options are limited).

Oh, here's a good one. I'm with Steve at an app (not an onc just his family
doctor). We're giving him an update. He points out to me that I have skin cancer growing on my neck. Says he can tell just by looking that it's cancer. (I have been meaning to point it out to my own doctor, but I haven't had time to see her). He said it needs to be removed within one month. Said he himself would do it. Apparently he has specialized training in skin cancer. Got home and inspected myself. Have several other growths that look just like it. Could end up being major surgery! I just don't have time for this. I'm always braced for bad news at Steve's appointments, but I wasn't expecting this!

hippiechicks
Posts: 302
Joined: Sep 2012

Oh that is great news!! Hope all goes well tomorrow.  It is such an exhausting cycle. 

And yes...you are right...sometimes I think these doctors see so much of this they become numb to the whole thing. Just another day at the office for them and we are hanging on to every minute and every phone call, test result, or scan with so many emotions tied to them.  It is a very hard place to be.

Best of luck to you both!

 

 

Brenda Bricco's picture
Brenda Bricco
Posts: 547
Joined: Aug 2011

I am so glad...:) I don't know if the docs or nurses realize we are always trying to read between the lines. I am so happy for you good news. Laughing

jen2012
Posts: 1130
Joined: Aug 2012

Thanks Brenda...they should understand that!

Chelsea...i meant to add before....take the time to get to a dermatologist...you dont want another big issue to deal with! Skin cancer can be deadly too. I had a "funky" looking mole on my back removed in july and it did end up costing a couple thousand dollars but the margins were clear according to the highly recommended derma. I saw so it was worth it. Took about 20 mins for her to remove and then she sent me for mohs? Surgery because the labs were inconclusive. That took less than an hour. Find the time and go to a specialist...not your husbands gp!

janderson1964
Posts: 1343
Joined: Oct 2011

i am really happy for your good news. your right i cant believe that these doctors and nurses arent more considerate. i have the same probem.

Momof2plusteentwins
Posts: 423
Joined: May 2012

Glad they contacted you about results, or you contacted again really. I know what you mean about results, I told my onc that I know when results are done, I am a nurse in the hospital. I demand my results right away and my husband told the onc that he can not live with me if I don't get the results, it's my life your talking about, I don't want to wait. You just have to be aggressive about it, or I won't stop bugging them. Good luck with appt, at least it will be a lot less stressful.
Sandy :)

BusterBrown's picture
BusterBrown
Posts: 221
Joined: Mar 2005

 

I could write a book about waiting, I've been dealing on/off with cancer for 8 years, I know how it is to wait for news. The best advice I can give is don't worry about it till you know for sure. Do your best to compartmentalize this disease and visit it only when you have to. Live your live the rest of the time...

Buster...

BusterBrown's picture
BusterBrown
Posts: 221
Joined: Mar 2005

 

I could write a book about waiting, I've been dealing on/off with cancer for 8 years, I know how it is to wait for news. The best advice I can give is don't worry about it till you know for sure. Do your best to compartmentalize this disease and visit it only when you have to. Live your live the rest of the time...

Buster...

taraHK
Posts: 1961
Joined: Aug 2003

I was diagosed with bone mets about 2.5 years ago. Yes, they can certainly be treated with chemo. Also can be treated effectively with radiation (esp for pain relief -- and if just 1-2). It may be that the current chemo he's on is no longer effective. That happens. Luckily, there are many other chemo 'cocktails' out there, and it may be a matter of of switching to a different one. I keep getting frightend that I will run out of options but new ones keep popping up.

I've now switched to CPT11 (irinotecan), Avastin and Xeloda. Really enjoying being off Oxaliplatin and Folfox! 

BTW, I had no symptoms from my bone mets for about 2 years now. Now having some pain but quite easily managed with meds.

The clear biopsy is good news! I hope, for your sake, this is all "nothing".

However, my onc keeps telling me "nobody ever dies of bone mets" -- those are encouraging words to me!

Keep breathing out as well as is!  

Yes, waiting is SOO hard. 

Love,Tara

taraHK
Posts: 1961
Joined: Aug 2003

Not too add more burden! but, when you get a chance, could you let me know a little about the bone biopsy? Done under general or spinal? Very painful (after)? I may be having one, to get some tissue for genetic testing....

 

Thanks,

Tara

jen2012
Posts: 1130
Joined: Aug 2012

Hi Tara...his first bone biopsy was in august and as we were waiting in our little holding cell the inter. radiologist came in to explain the procedure. This nice gentle soft spoken doctor said he would be twilighted so he would see and hear everything but feel nothing. Then said "oh dont get nervous if you see me pull out a hammer" we laughed figuring he was joking...but he wasnt. My husband said he looked like Mario swinging away trying to get a sample...that was the right hip i believe. We went to a fair the next day. This last one was a iliac bone. Took 1/2 hour...was in recovery for an hour and then he walked out and came home to rest. No major pain. He said the worst part was the novacaine needle.

So they never confirmed yours were cancerous? Did you just have lesions that showed up on the pet scan?

jen2012
Posts: 1130
Joined: Aug 2012

You guys are all very kind and understanding. I felt a little stupid last night for assuming the worst and letting myself get so upset.

Buster Brown...my husband does just that..only thinks about cancer when he needs to. Says he wants it to be the smallest part of his life and wont give it time it doesnt deserve. I tend to obsess about it and drive myself crazy. Like googling "no active cancer cells" last night leads me to think there are these dangerous little lesions just waiting to jump out and scare us. Trying not to worry about what may not happen. Tara ...glad to hear that they are very treatable!

Chelsea...So sorry Steve continues to have problems. Life seems to unreal. I found myself waiting in the pick up line for my son yesterday just pissed off watching people laughing and going about life without care. I hate that anyone has to deal with this crap.

smokeyjoe
Posts: 1428
Joined: Feb 2011

Interesting what you said about people asking how much treatment he will get.....or when will you be done with treatment.....I get asked that all the time,  how many treatments will you get,  when will you be done with treatment.....I have a nurse who I have had for two years doing my disconnect....when I recently started chemo. again  she actually asked me that.   Kinda threw me off because of all people  she should know this is going to be an ongoing thing and it's unpredicable.   

Chelsea71
Posts: 1154
Joined: Sep 2012

Wouldn't you think a nurse would know better? That's crazy!

Chelsea71
Posts: 1154
Joined: Sep 2012

I had to laugh when I read you googled "no active cancer cells". I do that all the time. Didn't realize anyone else would do this too. I will later google phrases or sentences the doctor uses while speaking to us. It gets me into trouble from time to time. I am my own worse enemy.

We had a big app. with a liver surgeon in Montreal on Monday. In preparation for it I had to get together Steve's pathology reports, recent consultaion reports, scans on discs etc. Got them from the records department at the hospital. I tried very hard to organize them without reading them. I knew the trouble I could get into if I started to read. Unfortunately, certain words would occasionally jump out at me and this would cause me to read sentences which necessitated reading paragraphs which lead to googling a hundred different medical terms etc..... I learned, for example, that a report would never just say, "no bone metastasis", or "bones appear fine". They would word it all as vaguely as possible. I also learned (at least in our case) that the onc doesn't tell you everything. Just what she wants us to know. Maybe this is why she wanted to fax these report directly to the surgeon. I'm actually grateful for this. It would have been a lot of worry for no reason.

Anyways, my point is don't worry too much about "no active cancer cells". Best to just take it as good news. Even if the bones look odd in certain spots it could be from previous injuries etc...

I hadn't thought about it but maybe having my husbands GP cut out my skin cancer isn't the best way to go. Could be one of those mistakes you look back on with regret. I will ask my doctor for a referral.

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