Needle biopsy – BEWARE
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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 prayersCathy-
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
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 CathyCathy,
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.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
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 stainingBelieve 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,
ashleyI’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
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,
MarionI’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
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!
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?
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.
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
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
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