Biopsy Back, Not Out of the Woods

[Mom2TwoAndACat]

We got my husband's biopsy results back tonight. At first I was really excited because she told us the biopsy was benign! Yay, right? Only... she went on to caution that the biopsy is only a relatively superficial thing and that he still needed surgery ASAP and that she "hoped and prayed" that they wouldn't find cancer once the mass was surgically removed. Talk about throwing ice water on a person. I have downplayed it to my husband because worrying about the biopsy was tormenting him so much, but now I read that biopsies have a high rate of false negatives. After reading that, the negative result has done nothing to soothe my fears. Husband is ecstatic and it's so hard because I feel like any celebration is premature. I was hoping the biopsy would put an end to the uncertainty, but it looks like we have miles to go before we can truly rest easy.

The surgeon we were referred to is out of the the office this week and next, so husband's doctor is going to send him for the blood work in the meantime. Don't know what kind, but we'll find out tomorrow. We'll try to get a date for the surgical consult as well.

[Nik Colon]

Hope all goes well. I know it's hard

Btw, you may want to add a signature with info so people can know what's going on for future posts.

Link to adding signature is at the bottom of my signature

[Cowgirl918]

I am so sorry. I am in the same situation as I have a large mass in my ascending colon. I was told years ago that the genetic alteration was already in that location. Now I have a mass. So as I wait for my surgery I take no comfort from the superficial biopsy. The thing I can tell you is that an initial benign has to be better than and initial malignant. I am choosing to look at it that way for now. So I guess we hope hope for the best but mentally prepare for various scenarios. Once again, the waiting sucks. You must feel so worried and helpless. One day, one step at a time. Find that right surgeon and move forward. Take Care

[Mom2TwoAndACat]

I am so sorry. I am in the same situation as I have a large mass in my ascending colon. I was told years ago that the genetic alteration was already in that location. Now I have a mass. So as I wait for my surgery I take no comfort from the superficial biopsy. The thing I can tell you is that an initial benign has to be better than and initial malignant. I am choosing to look at it that way for now. So I guess we hope hope for the best but mentally prepare for various scenarios. Once again, the waiting sucks. You must feel so worried and helpless. One day, one step at a time. Find that right surgeon and move forward. Take Care

I am sorry to hear you are dealing with this uncertainty too. You are right though, an initial benign biopsy is better than one that comes back malignant straight away. I will try to focus on that as well. I just worry so much about my husband and how he will deal with everything. He's feeling very positive right now after the benign biopsy, but I don't think he understands the rate of false negatives. I have no intention of bringing him down as it's best for his health and attitude to stay positive right now, but that means I'm alone again with my fears. We won't be able to talk to the surgeon until next week, so more waiting.

ETA: I see you are scheduled for surgery next week. You will be in my thoughts and I pray your mass will come back completely benign.

[dianetavegia]

While waiting for the surgeon to return, ask for a PET scan. The surgeon is most like going to ask for one anyhow. That would answer a load of questions.

[juliej]

Agree with Diane about getting a PET scan. Also, since your husband's doctor is going to send him for blood work, make sure a CEA test is included. That's one more piece of information.

That's the problem with biopsies. The biopsy needle could have picked up a few healthy cells that were surrounded by cancer cells. So if the biopsy results come back negative it does mean no cancer was found in the sample -- but if there is a mass, as is the case with your husband, then only surgery can confirm if it's truly benign. I know it's impossible not to worry, but try to concentrate on it being a low stage if it is cancer.

One more thing, you said you've been referred to a surgeon. Make sure he/she is a "board certified" colorectal surgeon. It's vitally important to get someone who is skilled in rectal operations due to their complexity.

Here's a website to verify a surgeon.
http://www.abcrs.org/verify-a-physician-2/

Hugs to you!
Juliej

[Cowgirl918]

Thanks for you kind words. I will wish for the best for you and your husband. I understand keeping worries to your self. I have prepped my adult children as best I can but I still think they are clueless. Don't want to worry them too much in case we have a simple adenoma but I do not feel like that is the case. Hang in there and we are always here to listen I am glad that your husband is feeling relieved.

[Mom2TwoAndACat]

Agree with Diane about getting a PET scan. Also, since your husband's doctor is going to send him for blood work, make sure a CEA test is included. That's one more piece of information.

I was not able to talk to my husband's doctor today, but the nurse I talked to said that she was sending an order for a CT scan of his chest/torso/pelvis along with the blood work. Is a CT scan a good starting point or should we push for a PET scan?

One more thing, you said you've been referred to a surgeon. Make sure he/she is a "board certified" colorectal surgeon. It's vitally important to get someone who is skilled in rectal operations due to their complexity.

The surgeon we have been referred to is board certified as well as being the director of colorectal surgery and colorectal cancer division at his home hospital. US News and World Report apparently also named him as one of the top 10 colorectal surgeons in the US, for whatever that is worth. I've been told his beside manner leaves a bit to be desired, but I don't much care about that. I just want someone that knows what he's doing! One of my husband's biggest fears is a colostomy, and with the mass being in his rectum he is understandably quite nervous.

[Nik Colon]

From what I know, CT is usually first and PET to confirm. Having both is the best if you can. But, depending on size, smaller ones may not light up on a PET.

What was the biopsy of? From the colonoscopy or something else?

Just double checking since others mentioned needle biopsy and seeding.

CT and PET are usually to look for spread.

[Mom2TwoAndACat]

From what I know, CT is usually first and PET to confirm. Having both is the best if you can. But, depending on size, smaller ones may not light up on a PET.

What was the biopsy of? From the colonoscopy or something else?

Just double checking since others mentioned needle biopsy and seeding.

CT and PET are usually to look for spread.

The biopsy was from the colonoscopy. I assumed they grabbed a chunk of tissue, but I really don't know. Do they use a needle? The biopsy report indicated no signs of malignancy or dysplasia. Hopefully that's a good sign and the doctor is just being extra careful sending him for a CT scan. And here we thought the worst part of this journey was going to be the pre-colonoscopy prep. Seems silly now to have that been a worry.

[prs]

I was diagnosed with a rectal tumor about a year ago. They did a rectal ultrasound to determine the staging of the tumor, ie how far it had progressed into the wall of the rectum. Also knowing exactly where in the rectum the mass is located will help you determine what type of surgery might be necessary.

It might be an idea to talk to your doctors about getting another biopsy; if cancer is confirmed then chemoradiation treatment to shrink the mass before surgery might be an option, and the surgery might be less invasive. I understand that with no cancer confirmation the doctors do not recommend radiation and even if they did it's unlikely your insurer would agree to pay for it. Of course if the second biopsy came in negative then that might be a cause for celebration!

[Nik Colon]

From what I know, CT is usually first and PET to confirm. Having both is the best if you can. But, depending on size, smaller ones may not light up on a PET.

What was the biopsy of? From the colonoscopy or something else?

Just double checking since others mentioned needle biopsy and seeding.

CT and PET are usually to look for spread.

The biopsy was from the colonoscopy. I assumed they grabbed a chunk of tissue, but I really don't know. Do they use a needle? The biopsy report indicated no signs of malignancy or dysplasia. Hopefully that's a good sign and the doctor is just being extra careful sending him for a CT scan. And here we thought the worst part of this journey was going to be the pre-colonoscopy prep. Seems silly now to have that been a worry.

Afaik, they take out a small chunk during the colonoscopy, I haven't heard of them using a needle, but someone else mentioned it so I didn't know if I was missing something.

[juliej]

I was not able to talk to my husband's doctor today, but the nurse I talked to said that she was sending an order for a CT scan of his chest/torso/pelvis along with the blood work. Is a CT scan a good starting point or should we push for a PET scan?

CT is an excellent starting point! Glad they are doing a chest/torso/pelvis right away. Did you find out if they did a CEA test in his blood work?

One more thing, you said you've been referred to a surgeon. Make sure he/she is a "board certified" colorectal surgeon. It's vitally important to get someone who is skilled in rectal operations due to their complexity.

The surgeon we have been referred to is board certified as well as being the director of colorectal surgery and colorectal cancer division at his home hospital. US News and World Report apparently also named him as one of the top 10 colorectal surgeons in the US, for whatever that is worth. I've been told his beside manner leaves a bit to be desired, but I don't much care about that. I just want someone that knows what he's doing! One of my husband's biggest fears is a colostomy, and with the mass being in his rectum he is understandably quite nervous.

Again, excellent! You've got a top-notch surgeon which means a better outcome. Good bedside manner is nice, but I'd a million times over want a doc who has serious talent with a scalpel over a warm-and-fuzzy personality.

Having been-there-done-that, I completely understand your husband's fear of a colostomy. But an LAR doesn't automatically mean a colostomy. Most rectal cancer patients have a temporary ileostomy, which is reversed after the area heals. Even if the mass is benign, he might need a temporary ileostomy to let the area heal properly. It's not fun, but it's doable and we'll be here to support you and him. Your surgeon will be able to tell you what is possible after he looks over the CT results. You might start writing down the questions you want to ask him so you're prepared for the consultation. It's easy to get overwhelmed and then think of all these things you should have asked after you leave!

[prs]

Your surgeon will be able to tell you what is possible after he looks over the CT results. You might start writing down the questions you want to ask him so you're prepared for the consultation. It's easy to get overwhelmed and then think of all these things you should have asked after you leave!

+100

[Pathfindergrl28]

I am so sorry. I am in the same situation as I have a large mass in my ascending colon. I was told years ago that the genetic alteration was already in that location. Now I have a mass. So as I wait for my surgery I take no comfort from the superficial biopsy. The thing I can tell you is that an initial benign has to be better than and initial malignant. I am choosing to look at it that way for now. So I guess we hope hope for the best but mentally prepare for various scenarios. Once again, the waiting sucks. You must feel so worried and helpless. One day, one step at a time. Find that right surgeon and move forward. Take Care

Hi cowgirl, I was wondering when you were diagnosed with your first adenomas? I'm 35, female. I was diagnosed with one 1.2 cm tubulovillous adenoma last December 2014. Two biopsies of it came back benign, and my GI doctor said follow up with him in 3 years for repeat colonoscopy. I asked him to do it within two years though, and am supposed to have my next one December 2016. I was just wondering when you first starting developing these, and did you have them every screening colonoscopy? I am Lynch negative, and have no family history of adenomas that I know of.... however, my sister has IBS and my mom & dad have never had colonoscopies (they are in their 50s). I have been harassing them to get one... My GI doctor told me this type of adenoma is somewhat rare for my age... I can't find much info on them in people in their 20s & 30s... thank you.