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MRI results

janderson1964's picture
janderson1964
Posts: 1826
Joined: Oct 2011

Most of you know I had a CT scan 3 weeks ago and initially I was told it was clear. Then the official report mentioned a tiny nodule near the surface of the liver. So they scheduled an MRI which I did Tuesday. Well I got the results today from my oncologist and as I figured it was inconclusive. He said I could do a biopsy or wait a few months and do another scan to see if there is any progression. He seemed to be pushing me towards the biopsy. He said if it is malignant surgery is proboly not an option since I had 2 liver resections. I told him he was already wrong since I have had 3 liver resections. The jerk doesnt even know my medical history. He also said RFA might not be an option since it was so close to the surface. I never heard of that before. I would think that would make it easier.

So I talked to my surgeon and he said he could operate and he recommends waiting 3 months and then rescanning. He said a biopsy on such a small nodule migh prove inconclusive as well.

Needless to say I am considering switching oncologist agin.

gophergenius
Posts: 33
Joined: Apr 2012

That's basically what I've been told, but I've been NED for almost 4 years!  They started noticing it on my CT scans when I was about 2 1/2 years NED.  It's growing, but I guess not fast enough.       This is why I ask quality of life questions.  I do not know if I am going to try surgeries/chemo or whatever they think is best for me IF it is cancer.  Maybe it is just something benign.  

wolfen's picture
wolfen
Posts: 1209
Joined: Apr 2009

It makes you wonder if the doctor even has "your" chart in his hand. I think I'd be looking around for a new onc also.

Take care,

Wolfen

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

We depend on our doctors to be on top of things so I see why you are so frustrated with your onc.  I would probably wait and get a new scan unless you have any bad feelings before your scan date. I pray everything works out for you.  Jeff

lp1964's picture
lp1964
Posts: 908
Joined: Jun 2013

They take a tiny biopsy, they put it under a big microscope and a pathologist can tell in 5 seconds if there are metastatic cells in there from the primary cancer or it's something else. 

Come on, don't let them bullshit you.

You can't play with cancer patients, wait and see rarely works with us And it's too risky. If its too small, take the whole thing out with the biopsy.

Sorry, I'm just upset alongside with you. So let's take a deep breath and calm down.

You know we all want the best for you.

Laz

janderson1964's picture
janderson1964
Posts: 1826
Joined: Oct 2011

I have read several times that biopsys are not 100% and more and more doctors are taking tbe wait and see approach. This is one tiny pea sized nodule near rbe surface of the live. My surgeon who recommended waiting is the head of the entire surgical department at a large inter city NCI recognized hospital. He has been performing liver resections for over 30 years. He was just recognized in US News as being in the top 1% in the entire country in his specialty.

Besides I have been fighting cancer for 8 years. How many years have you been fighting and you are going to tell me that I am being bullshitted because you have a different opinion.

You should keep your opinions to yourself if you donr have anything positive to say. I was really at peace about all of this until you pissed me off. 

I posted to get support from the veterans here who know how to support each other in a positive way.

lp1964's picture
lp1964
Posts: 908
Joined: Jun 2013

I didn't intend to make you feel that way.

Again, I'm sorry and wish you the best outcome.

Laz

janderson1964's picture
janderson1964
Posts: 1826
Joined: Oct 2011

Thank you Laz. As you can see we are all a little sensitive around which I am sure you are as well. Afterall it is a sensitive subject that is all personal to each of us in our own way. I try to keep that in mind and choose my words carefully when I am posting. I wish you the beas as well. I care for everyone here as if they were family.

herdizziness's picture
herdizziness
Posts: 3492
Joined: Apr 2010

Actually Laz, one little biopsy doesn't work, for instance on my tumor in.Colon they took several pieces to biopsy because one areas can show non cancerous when indeed it is cancer.  Plus I would be worried about seeding, not worth it, that's why my lung mets have never been biopsied, I don't want it.

Winter Marie

tanstaafl's picture
tanstaafl
Posts: 1014
Joined: Oct 2010

Laz, long time readers of these boards have seen several downsides to biopsies.  In general there is concern about puncturing and spreading a met.  Some have actually had new mets populate the needle track from cellular debris with poor outcome.  I think the overall bias is to get non invasive data, or one and done procedures.  

Even prostate biopsies with massive multiple punctures at close range manage to miss tumors sometimes.  

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

I think I would be switching to a new oncologist too!

Chelsea71
Posts: 1170
Joined: Sep 2012

Ditch the onc.  Try not to worry.  I would push for the biopsy.

jasminsaba
Posts: 149
Joined: Jul 2011

I know it's disappointing to be dealing with the unknown ... and so frustrating to be dealing with a doc who isn't fully informed about his own patient. In your shoes, I'd push for the biopsy now - knowing myself, I'd never be able to make it through the next three months not knowing what is or is not growing inside me.

Also, to address an earlier comment about biopsies - there IS such thing as an inconclusive biopsy. Depending on the sample they take, they may very well miss cancerous cells inside a specimen that might look (be) suspicious for malignancy. That's what makes it inconclusive ... it's the same as innocent until proven guilty - sometimes, you can't prove the guilt even if you know a crime was committed because the evidence is just not there.

Whatever you decide, I wish you all the very best ... and will pray that this turns out to be nothing sinister.

janderson1964's picture
janderson1964
Posts: 1826
Joined: Oct 2011

You are absolutely right. I am at pease with my decision. I had made up my mind to wait if the mri was inconclusive.i am happier now than i was the past 3 weeks wasting all that time doing scans and doctors visits. It would be another wasted two weeks for the biopsy. If there is growth when i get the scan i am going to tell them to cur it out and dont waste time and money with a biopsy. Who knows maybe 4 liver resections will be a record for that hospital.

jasminsaba
Posts: 149
Joined: Jul 2011

sorry

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

you are so upset thats how this roller coaster ride goes.i had a spot come up on my liver 5 months after my liver resection.a good indicator for me was my billiruben level went up.man they were quick to do rfa on that one i was in and out.what is your billiruben level?is it within normal range.and yea i have learned to trust my surgen any day over my chemo onc.keep the Faith and keep fighting...Godbless...johnnybegood

Cathleen Mary
Posts: 641
Joined: May 2011

Jeff,

Sorry that you are going through all of this uncertainty. Prayers for a decision that you can be comfortable with and a good outcome.  I don't know what you should do; I can only know what I might do...get a second opinion.

Cathleen Mary

janderson1964's picture
janderson1964
Posts: 1826
Joined: Oct 2011

I got the second opinion. My oncologist opion sucked so I immediately got my surgeons opinion.

janderson1964's picture
janderson1964
Posts: 1826
Joined: Oct 2011

My bilirubin is normal along with all of the blodd test for liver funtion.

herdizziness's picture
herdizziness
Posts: 3492
Joined: Apr 2010

Don't blame you for switching Onc, I'm so happy to have mine, he reviews my chart along with me everytime, asks about anything my body might be doing new, checks all the tests over again, shows me the results and gives them to me when I remember to ask for them.  Right now we are emailing each other every day due to his request while we wait on latest tests done.  I hope you find one like that soon!

here's hoping it's nothing but understand the waiting, I'm glad to hear you've had three,makes me feel better about just having my second and knowing a third is a posssible option if need be.

Glad you have a surgeon you feel good about, now if you can find an onc that you can feel about too!

thinking about you and sending hugs,

Winter Marie

janderson1964's picture
janderson1964
Posts: 1826
Joined: Oct 2011

Thanks Marie. I do have that kind of relationship with my surgeon. We email several times a day. I could never get my oncologist to return one email or phone call.

tanstaafl's picture
tanstaafl
Posts: 1014
Joined: Oct 2010

Jeff are you using the LEF or Moss type list of alternative adjuncts ?  When we experience sustained suspicion of activity, we incrementally add stuff, another molecular target, anticancer extract/drug off-label, or two, or maybe a higher dose.  We also ramp up blood testing, more frequently and more markers.

At sometime you may strike out with oncs in general, we did.  We use the surgeon(s), a dedicated radiologist, an internal medicine altmed MD who handles many cancer cases, and outside groups like LEF or Riordan Clinic and labs.  

 

janderson1964's picture
janderson1964
Posts: 1826
Joined: Oct 2011

Yeah. I am done with this oncologist which is my second one. I will just see my surgeon for surveilance and follow up care. No more oncologist unless the day comes where i need treatment avain.

BTW  if i end up having surgery. No chemo afterwards. Done the mop chemo 3X  and I am over it now.

tanstaafl's picture
tanstaafl
Posts: 1014
Joined: Oct 2010

Jeff, just because we are long done with the oncologists doesn't mean she's off chemo - several of her doctors have signed scripts for her chemo, UFT aka tegafur-uracil.   We use  multiple adjuncts, including many from the LEF list, *with* low dose UFT-LV full time.  The closest available drug in the US is low dose xeloda but my thought is that the FDA should be roasted/defunded until they have some better cross border policy on UFT - it's much more friendly and adaptable for successful long term use.  

I am concerned that if she even pauses on the chemo lite right now, because of CEA instability that something will take off even though the bad stuff in general has been shrinking and disintegrating, slowly.   

annalexandria's picture
annalexandria
Posts: 2320
Joined: Oct 2011

He's the head of the oncology dept. and known for his research, all-around popular guy, and I can't stand him.  He never seems to remember who I am (even though I have a super-rare tumor and unusual progression which should make me at least slightly memorable).  I've found that my surgeon is a much better resource for me, and seems a lot more focused on my case.  Oncologists in general seem to not be very knowledgable about anything beyond the two or three standard chemos they offer to everybody.  I'm glad your surgeon is on the ball, and it sounds like he has a good plan for you. I've done the "watch and wait" thing on several occasions...sometimes stuff grew, and then it was time for surgery, and sometimes it didn't.  It's a pretty good approach, IMO.

danker
Posts: 769
Joined: Apr 2012

All my initial doctors, other than my internist, were just given to me.  When the results of the colonoscopy was a tumor, The hospital just scheduled me to see a surgeon on Monday. They also selected my oncologist, who was the biggest jerk i've ever met.  Upon realizing this, I went to my surgeon, the most caring doctor I have ever met, with a list of three oncologists at the hospital.  The surgeon gave me a consult with my new oncologist.  Over three years later I still see this onc.  When I told my wife I was going to fire the first one, she said:"youj cannot do that!" I said just watch me. Ultimately we are paying these people and I don;t want to pay him any longer.  

So if you think you need a change, go for it!!!!

janderson1964's picture
janderson1964
Posts: 1826
Joined: Oct 2011

It was the same way with me in the beginning. The jospital just made appointments for surgeons and oncologist. This oncologist is my second one after i fired the one the hospital sent me to. I am ready to change again if i need one. For now i am just going to let my surgeon handle everything. If it turns out to be cancer and i have another resection with clear margains and no other evidence of disease i will NOT be doing mop up chemo.

smokeyjoe
Posts: 1428
Joined: Feb 2011

Biopsys can be dead wrong.....I had a tumor in my colon the size of a fist completely blocking my colon,   they took a biopsy of it and it came back pre-cancerous .... never mind digging and looking for a tiny spot ...... it was huge and right there, and path came back wrong .....they couldn't figure out what was going on so they sent me to a gyno. doc at a bigger cancer centre ..... anyway long story .......   Stick with your surgeon, he sounds spot on.  

janderson1964's picture
janderson1964
Posts: 1826
Joined: Oct 2011

I think my surgeon is spot on and I am at peace with the decision to wait. Many years of fighting has taught me some patiance. Not only is the spot tiny but is is located right behind a rib which would make it evan harder to get an accurate biopsy. I am still holding out hope it is nothing. I say my chances are 50/50. Either way at least I know it can be dealt with surgically. Not that I want surgery but it is better than chemo. I will not do chemo again unless it is for non-resectable disease.

marbleotis's picture
marbleotis
Posts: 523
Joined: Mar 2012

I think you answered your own question.  Time for a new Onc.

Be good to yourself!

janderson1964's picture
janderson1964
Posts: 1826
Joined: Oct 2011

New onc is definately in the future if and when the time comes that i need one again.

Deena11
Posts: 193
Joined: Nov 2012

You sure have gone on a wild rollercoaster ride. I'd go the some route as you have decided to go...get another (3rd) Onc.  You have always been a top contributor on this board.  We are all pulling for you!!

Deena

janderson1964's picture
janderson1964
Posts: 1826
Joined: Oct 2011

I know you all are but thank you for saying so. Its good to hear.

Luckygirl2
Posts: 308
Joined: Mar 2012

I have a 3 month wait for another CT scan, seems I have multiple enlarged nodes, wait and see...very stressful.  October seems a long way off!  I hope you get great news! 

 

Debbie

janderson1964's picture
janderson1964
Posts: 1826
Joined: Oct 2011

It seems long now. But it will creep on you/us faster than you think. It looks like we will be scanning buddies.

lp1964's picture
lp1964
Posts: 908
Joined: Jun 2013

...my apology. It was a big relief. The last thing I want is to offend anyone here, but your emotions just got a hold of me too. I haven't gone through a fraction of what you have, but I want you to know that I deeply care about each and every one of us here.

I have my surgery coming up in like 6 weeks. I saw 4 surgeons already and I was treated on a very superficial level. If they promised to look at the CR and call me back, they didn't. One was checking his text while I was talking, so I had to stop to get his attention. Needless to say I'm getting nervous about it.

Take care till next time.

Laz

janderson1964's picture
janderson1964
Posts: 1826
Joined: Oct 2011

Yeah dealjng with some of these doctors can be so frustrating. I feel your pain. You will be fine though. You ar doing the right thing by not rushing into it like so many of us do including me when first diagnosed. That is why it is no big deal for me to wait 3 months and rescan. Years of experience are paying off. 

Its normal to be nervous. I was scared to death before my fourth surgery and I really dont want another surgery. However i would take surgery of chemo in a second.

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