Another biopsy request and I am confsued!

[pokergirl]

My bf has rectal cancer and has been through all the staging.

Two CT scans, rectal ultrasound, PET scan. His PET scan was yesterday and they called today to schedule yet another biopsy.

Why would they do another biopsy? He is very upset and doesn't understand and the nurse (the GI cancer coordinator at the cancer center) said she didn't have the pathology report in front of her.

I'm scared that something is really wrong. What are they looking for?

[Magnolia]

I don't know, pokergirl. Not quite enough info. Just trust them. They'll do the right thing. He'll get the treatment he needs. You already know he has cancer. The second biopsy won't change that. It will only give more information about the staging or the cell type in order to make the best decision about the type of treatment. I know it's hard not to worry. This is scary stuff. But take a deep breath and try to relax a bit. Read my favorite book, "The Anatomy of Hope" by Jerome Groopman. I can't say enough good stuff about that book.

[pokergirl]

Thank you Magnolia.

He is stage III. His liver looked clean on the CT scan but there were some "questionable" places in his upper abdomen so they did another CT scan last week of that area. Then the PET scan yesterday.

He is scheduled for surgery Nov 13th, then chemo/radiation.

This is a very bad day for him. He is angry and said he is tired of going to the doctor every other day. Unfortunately, it has just started. He isn't in the mood to talk about any of it so I can't ask questions right now. I just have to let him be.

I am so scared and can't find any reference on the net about the need for a second biopsy.

[Magnolia]

They've got their reasons, and it's probably nothing to panic about. I just wish the told you. Get the book. It did me a world of good, and I think it will help you too.

[pokergirl]

Thank you. I will try to find the book.

[Edward]

If they are looking at something in the upper abdomen, it is possible that the scan was at it's limit of view. This happened in my situation. I know your scared and frustrated. I usually kind of tell them that I don't don't have my MD or doctorate, please draw pictures.

I could hold my own with my oncologist with history, politics and pop culture, but I leave the medicine to him and ask for pictures or layman's terms.

[pokergirl]

I know what you mean. My boyfriend hates asking questions and so I must let him deal with it his way until he is ready to talk about it.

Apparently they are going to do a biopsy from the same tumor in his rectum. Does anyone know what this will show? After the initial biopsy and then all the tests after that, I can't imagine what new information they are seeking.

Thanks for being so patient with me. This is a very trying time for us.

[Hannah]

Hi pokergirl -

Of course you are scared and concerned, and of course your boyfriend is already tired of being poked and prodded. There is not one part of this that is fun! Try not to be too stressed out (I know, easier said than done!) - this is not completely abnormal and does not necessarily indicate that they think something worse is wrong.

There are several reasons they may be doing a second biopsy. One reason for a second biopsy would be if they saw something "light up" in the PET scan - for instance, a spot on the liver or lungs. But since you are already fairly sure those areas are okay and that does not seem to be what they are doing the biopsy on, that is probably out.

You said they are doing it on the same tumor - are you absolutely sure? I would confirm that they are doing the biopsy on the same tumor. That is a little bit out of the ordinary, but there are still plenty of good reasons they might be doing it. One is that they may have lost or accidentally destroyed the first one and don't want to tell you - but that is fairly unlikely so I wouldn't assume that is what happened.

I think that it is more likely that the doctors:
1) are looking for a larger sample than they got the first time (which may be especially true if they need to send out part of the tumor for various types of testing - for instance, for genetic testing or for microsatellite instability testing, which is a type of DNA change that may indicate genetic factors)
2) simply want to reconfirm the original pathology
3) want to biopsy a different part of the tumor, especially if it is large or "spread out" over the rectum
4) saw another "spot" on the PET scan that may indicate the tumor was more spread out than they originally thought - the tumor may be kind of "spread out" over the inside of the rectum and they want to make sure they have the exact area marked prior to surgery so that they are sure to get clean margins around the tumor

There are probably other possible reasons that I can't even think of. If your boyfriend doesn't want to talk about it (which many, many patients don't want to do at this point), don't be afraid to take the doctor aside and ask "What are you doing the biopsy on? Exactly why do you feel that you need to do a second biopsy? Exactly what are you looking for in the second biopsy?" If you can (and it is your boyfriend's right to do this) get a COPY of the original pathology report from the first biopsy, and continue to get copies of absolutely everything else from here on out. Every doctor and hospital has a bit of a different procedure for getting copies (some make it hard, some much more easy) but you can get them if you are persistent.

One note about his call to the doctor's office - if the nurse "doesn't have the pathology report in front of her" you can politely tell her that you would be very happy to wait on the phone so that she can go and get it, since the information is extremely important. This is your boyfriend's health and it is part of her job, so don't let her blow you off.

Lastly - I would recommend a book called "What Your Doctor May Not Tell You About Colorectal Cancer" by Dr. Mark Pochapin. He is an amazing person and a phenominal physician, and it is a very informative and readable book. You can buy it new ($17.91) or used (starting at $2.10) at Amazon: http://www.amazon.com/What-Doctor-About ... 044653188X. This is a great book for you to read, and for your boyfriend to read if he wants to - gives a great overview of lots of issues, medical information, etc.

Be sure and let us know how tomorrow goes.
Hannah

[Magnolia]

I read "What Your Doctor May Not Tell You" too. It's a great book.

You know the first biopsy may have been inconclusive as far as cell type or degree of differentiation went. They just may want more information from a larger sample. Biopsy samples are usually pretty small and they may need to cut more slides. It's unusual, lbut not necessarily ominous.

Has your b/f given the docs permission to talk to you about this? HIPPA laws won't allow them to discuss a case even with a spouse unless permission is given in writing.

I know when there's something you don't know, it's so easy to imagine the worst, but most often, that's not the case. Try to get your b/f to arrange for a conference with you and the docs if he's OK with that. Take a notebook with you and write everything down. Write down questions beforehand and every bit of information you get during the conference. If you need to, and if it's OK with b/f, have another person, a friend or relative, there to keep track of stuff you may be too stressed to absorb. Talk all this over with the b/f as soon as he's feeling receptive. As much as this affects both of you, you can't do much without his buy off.