Topic: Needle biopsy - BEWARE

I'm following several other websites, etc. with patients being transplanted for CC. ( like my mother). I want to share this post  from a young man just starting the Mayo protocol in Florida. What his docs are saying is the same that we were told at Mayo - minnesota and luckily my mom's doctors at Yale (1st opinion)knew NOT to biopsy the tumor. If this type of biopsy is known to potentially spread the cancer, I hope every new member having to come to this board can be made aware. Occasionally I do read new members talking about a biopsy and it gets me going to think that some docs out there must not agree or know about this?? I just don't know.

Here is Brian's post from a day of testing at Mayo - Jacksonville:

The only setback we had so far is that when they did the biopsy the beginning of September (the one that diagnosed the bile duct cancer), the doctors at MUSC used a needle and went from outside my skin into the liver to get the samples.  Normally that type of biopsy would automatically disqualify me for the liver transplant because when they pulled the needle out cancer cells could have seeded in my abdomen and skin.  Dr. Harnois had already been aware of this and had spoken to several members of the review board and they said they would consider my case.  With this information she felt that there was not a problem with going forward with the evaluation for now.  They will probably do some extra radiation in that area to be extra safe before the transplant.  The problem is that with a liver transplant they have to put me on medicine during and after the transplant to lower my immune system so low that the body won

Re: Needle biopsy - BEWARE

Ashley.....this is highly interesting.  Thank you so much for posting it.  I am hoping for others to read this also and to discuss this with their physicians when a biopsy is contemplated. 
Thanks again and best wishes for your Mom,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Needle biopsy - BEWARE

Ashley,

Thank You for posting this. It is very interesting and makes sense, CC seems to spread so easily and rampantly.

Thinking of you and your Mum,

Katie

Re: Needle biopsy - BEWARE

Ashley,
Sitting here in tears.  My husband always contended that he thought his CC had spread because of the needle biopsy...not that we were really given a chance at denial.  Seems once the doctors are on the trail of something they just schedule you for tests without much explanation while you are still in a state of shock from the previous tests.  Thanks for the posting.
Peace,
Karen

Wishing all God's blessings!

Re: Needle biopsy - BEWARE

Thanks. My father will be going in for a biopsy in the next few weeks/month your post plus what I've read in my sleepless internet studies shows the needle biopsy (fine needle aspiration?) can spread. Does anyone know if ercp biopsy can spread? Is it possible for an ercp biopsy to not yield results?  When they put his metal stent in they said they couldn't biopsy because they didn't have the right machine? They did brushings (non conclusive) It is confusing.
Thank you!

Re: Needle biopsy - BEWARE

Ashley,

Thanks for posting this.  My husband too had a needle biopsy done.  As Karen said,  everything was moving so fast & you didn't really have a chance to think about it or to say yes or no, but I often wonder if that was part of the reason things went so swiftly. 

I too am hoping others will read this & will have a chance to think it through and make a more informed decision on wether or not to have this done.

Thanks again for putting this information out there.  I will be hoping for the best for your Mom.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Needle biopsy - BEWARE

Hi Adam. When they did not biopsy because of not having the right  machine did they talk about sending you to a place that had the proper machine?  I would suggest you try to read up on some past posts on this site and honestly go with your gut feelings as they are usually right.  Nothing wrong with a second opinion either.
Also I guess I would be thinking, IF I chose to have a biopsy, why are they waiting a month? Perhaps a good question to ask would be "have you treated CC before". Please do not underestimate yourself and what you are thinking as you will be your dad's best advocate.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Needle biopsy - BEWARE

My dad had a needle biopsy in October and his cancer did not seem to spread from that. That one was inconclusive (malignant but not certain CC). He had a laprascopic (sp?) biopsy in March that showed no spread, but was still inconclusive.
My caution to anyone considering a lap biopsy is to take into account the patient's age. Though minor, it is still considered a surgery and having that seemed to begin a decline for my dad. He had issues including dementia from the anesthesia, urinary catheter had to stay in a week. Having that is a decision I would like to have back sad

Re: Needle biopsy - BEWARE

Wish I had known some the things on this thread a couple of weeks ago. I would have had a long list of questions for the oncologist's receptionist. As it was, I only asked about 3 or 4 questions, but enough that she had to find answers to some and call me back later. I had a liver biopsy Tuesday and they said that the Dr. might have results today. I could call Friday if I had not heard from him/his office by then. Thank goodness, they called this am with GREAT news. No malignancy in the fluids withdrawn (about a teaspoon). I just had a PET scan this morning. I hope the results will be as good, but I won't find out till next week. So, I'm still waiting, but at least I think I'm recovering from whatever infection kept me home a week.
Louise smile

Re: Needle biopsy - BEWARE

Louise, that is such great news! Congrats on the first half!!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Needle biopsy - BEWARE

Hi --

Just want to add that many, many medical centers recommend AGAINST the biopsy as a diagnostic tool because spread is a concern. However, I think for some of us, true diagnosis is SO difficult that they end up at biopsy because nothing else tells the story. In my case I had been warned about a MILLION things it could be -- but no one had put cholangio on my radar screen.

Re: Needle biopsy - BEWARE

OK, so after reading this I am glad that they didn't do the needle biopsy on Mom yesterday.  But they had done a tissue biopsy on her earlier in the week during her calangiogram and drain placement.  Are these types of biopsies a concern as well?

Re: Needle biopsy - BEWARE

How in the world can a needle biopsy spread cancer cells and the brushing not?  Seems to me the brush could dislodge many cells which could migrate to other areas of the body.  Sometimes I just don't understand all that I read.  Help!

Re: Needle biopsy - BEWARE

I've had 2 needle biopsies and several brushings and I'm still cancer-free (2 years this January).   Prior to the biopsy, I had an MRI, Cat scan, ultrasound and blood work but the biopsy is what confirmed the diagnosis of cc.  How else can the diagnosis be confirmed without a biopsy?

Betsy

Re: Needle biopsy - BEWARE

A biopsy is much more invasive than a brushing and yes, it will exclude anyone from a liver transplant for Cholangiocarcinoma.  Additionally, biopsies are required for clinical trials something not always easily accomplished for many or our patients.  This is one of my pet peeves.
Best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Needle biopsy - BEWARE

I'm really confused.  If you are a candidate for surgical removal of your tumor, how else would you know it was CC if a biopsy wasn't performed?  Or for that matter, if the tumor was malignant or benign?  Is this discussion of whether or not to biopsy based on patients who are not candidates for surgery?

Betsy

Re: Needle biopsy - BEWARE

Hi Betsy,
My mom had her transplant without ever having a needle biopsy. ERCP brushings revealed 'suspicious' cells but nothing definitive. In our case the Mayo's protocol diagnosed CC with only the following:

visual tumor on CT scan
CA 19-9 blood test
FISH staining 


Believe me, after transplant when they then biopsied her liver and found no tumor due to necrosis of the tumor from chemo and radiation, I sat there and wondered 'what if she never even had cc?". 


My initial statement did not mean that every single needle biopsy causes seeding. However, the chance of seeding increases with this procedure. I have followed at least two carepage stories where patients were accepted into protocol to then be removed because the cancer spread like a dotted line exactly where the needle woud have been removed ( and the biopsies were done with doctors prior to the patient ending up in the Mayo protocol). The problem is that whenever someone gets a potential diagnosis the biopsy is what we have been condititioned to believe  is what we need first for the malignant/benign diagnosis of any cancer. I would assume the ERCP brushings are fine because I believe these samples are what can be sent by your doc to Mayo for the FISH staining ( not done at most hospitals).   

Unfotunately, tumors in this area are rarely benign. The  one type that is benign  can be treated with prednisone and is detected with a blood test. I can't recall the test ( IF-4?) but it was the first one they gave my mother Day 1 at Mayo  in the small small hopes it was benign.


Hope this helps. I'm glad to see this thread is still being discussed - and I hope it can help people who are just hearing of CC for the first time.
Best of luck,
ashley

Re: Needle biopsy - BEWARE

Hi- I am 2 time transplanted cc survivor. My care and transplant was with Dr. Chapman at Barnes-Jewish Hospital. One of the first things told (and so much was said), was the fear of seeding. Exploratory surgery to make sure cancer hadn't spread was a concern.  My other option was 6-8 months, so it wasn't very hard to do the math. I will be immune suppressed the rest of my life and that is the key word "the rest of my life" and once again the math on that was pretty simple! My drug bill for anti-rejection medicine is $2000.00 to $5000.00 a month, but like my doctor said I am worth at least that!! Don't make yourself crazy with all the what "ifs" focus on the big picture, LIFE!! I am cancer free and alive due to 2 transplants!!- Cathy

Re: Needle biopsy - BEWARE

Cathy,
firstly, wondering why you had 2 transplants and secondly, how diffilcult was the procedure? I am pretty sure I will be approved this coming week for my transplant at Mt Sinai (live donor liver) and find I dont worry about the peripheral stuff because being alive for my 13 and 16 yo boys is my primary goal. I have been more concerned about being "explored" immediately before the transplant is to take place and wont know if I have the procedured until I wake up.

Re: Needle biopsy - BEWARE

Mom- I had 2 transplants (both cadaviers) because a month after first one on 4th of July my hepatic artery burst, due to radiation damage. They at first thought they could do a graft but realized it was "like trying to sew wet toilet paper"! They had to cut off liver function and I was given maybe 36 hours to find a new one. My battle is so full of miracles and what ifs.
You are right about worrying, you can't stop it, but you can keep remebering I am alive. My family and I always knew that I could be oppenned up to find out it had spread. I will always remember my husband, daughter and sisters faces when I woke up from surgery, I knew it was all good. Focus on that moment. Second transplant was a different story, they had decided to wait to tellme I had been transplanted again, my husband lasted 5minutes!!
Do you know who your live donor will be. I also had to undergo 2 "fake liver
calls", both time I was prepped and just waiting for drip, when surgeons decided new liver was a no-go.
Keep thinking about your boys, I have a 22 year old daughter. My first question when diagnosed was will I see her graduate college and dr. said yes. May 8,2009 I watched her walk across the stage and receive diploma. I ended up back in hospital next day (I got CMV, something immune suppressed people have to watch out for), but I saw her!! My diagnosis and recovery has been a 2 year journey, but I am alive and functioning.
Good luck and keep praying, sending prayers your way. Feel free to e-mail Cathy

21 (edited by KentuckyJack Sat, 11 Dec 2010 11:44:56)

Re: Needle biopsy - BEWARE

Cathy-

Like you, I've been a patient at BarnesJewish/Washington University in St. Louis, unfortunately not a patient of Dr. Chapman.  Interestingly, I received a needle biopsy at St. John's Mercy last Jan-Feb, 2010, to diagnose the IHCC.  When I went for a second opinion at Barnes, the surgeon was initially very enthusiastic about doing a resection, but the MRCP "final test" before surgery proved that the tumor had invaded the blood supply too extensively for surgery after all--or so they said.  They further explained that I would not be eligible for a liver transplant, but declined to say why.  Thanks to this thread, I now know why.

I would not accept or be interested in a transplant, anyway, and I told the Barnes docs that.  I've just had too many chronic illnesses and conditions which require a healthy immune system to combat, and I don't want someone else's liver if it could go to a healthier recipient.  I have recently read of first success at growing fresh new livers from something related to stem cells, but so far they've only grown "mini-livers"--not yet usable size to be effective for transplants.  Now I would indeed want one of the livers made from cells donated by my own body.

As I am now going back to St. John's Mercy for a consult with their chemo oncs, it will be interesting to hear what they have to say about needle biopsies and liver transplants, if anything other than "we'll have to refer you to the surgeon for that answer."

Thank you and Ashley SO much for sharing your experiences, and providing the facts on this.  God bless you and your transplants!  And may the peace of Christmas flood your lives.    -Tom

Re: Needle biopsy - BEWARE

Tom-so interesting to here from you. I am Barnes #1 fan. My diagnose was so quick and unexpected and treatment so immediate I never had to weigh  any information. The only thing I ever googled was an ERCP, which thank god I did because when scheduled at Alton Memorial I was told I could eat drink and drive myself!! God stepped in and started his first of many miracles at Barnes. I always post here on my positive expierence with cc-kinda of an oxy-moron!! I just hope my expiernces will give hope. Hope was something we found plenty of with all my Wash-U doctors, I coded and they never gave up. When I awoke from a 3 week coma, we joke they were just as amazed.
I wish good you luck at St. Johns, but I have a funny feeling they will be referring you back to Barnes. Good luck and lots of prayers