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Scheduled appt w/specialist for signet ring

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

Hi everyone,

I have scheduled an appointment with

Dr Hanna at the University of Maryland to evaluate my case. he is one of the

Signet Ring specialists. We were trying to decide between MD Anderson and

Maryland ... The logistical nightmare of flying someone in to be with the kids

(we have no family local)and then having to fly out to Houston (DH and I) ...we

just couldn't make it work...right now.  (i am open to traveling if need be at a later date).  MD is only about an hour away ...they were able to

get us in on 5/7 for a consult....we have to wait because DH is going to be out

of town for part of the week over the next few weeks. Not even sure if I need

surgery immediately ... or at all.  The results of my CT scan are still out...my local onc is having another radiologist review it this week.  I just want a 

second opinion...look from an expert who can tell us what is really going

on...If I need to undergo HIPEC now or at a later date. I have also heard that sometimes they will do a laparoscopic procedure to see what is going on in there.  The thing we are most concerned about is the mucous from signet ring...the local onc was not very helpful...he said that the CT might or might not show it even if it is there.  I still have the back

pain and have been having the big D for the better part of a week now. I have

an appt with my local medical oncologist this Friday.

 

Alex

 

 

 

thxmiker's picture
thxmiker
Posts: 1278
Joined: Oct 2010

Check out Dr. Sugerbaker, he is your neck of the woods and considered one of the top 5 Oncologists in the country.

 

http://www.surgicaloncology.com/

 

Best Always,  mike

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

He is on my list too.  The only problem is that he does not take private insurance...I know that we can do a single service Contract...I think that is what it is called.  The other loal docs... sardi and Esquivel are on the insurance but not part of that guaranteed preferred treatment list of hospitals that United Healthcare has.  We just can't afford extra out of pocket expenses for going out of network.   If we do have to go the surgery route then I will look into seeing a couple of other specialists for a 2nd or 3rd opinion....probably one of the ones listed and MD Anderson...because we have heard so many good things about them.  I did talk to dr Sugarbaker's office back in the fall...and was told that he was limiting new patients and that the contract thing was a lot of work on their part that they didn't want to do.  Although I have heard that there have been contracts approved with him through UHC.   I am going to give them a call this week and see if we can get in there also...but book it for after UMD.   If it isn't necessary...we can always cancel it.

 

alex

Ruffy7
Posts: 126
Joined: Sep 2011

I found the drs at University of MD to be very understanding and compassionate.  Like I've said before Dr. Alexander called me personally and Dr. Hanna has emailed me in response to questions I've had re. my appendix cancer.  FYI, not sure if you'd be interested in this or not, but their website did have a video of an actual HIPEC surgery.  Undecided

 

My local onc who has had several appendix cancer patients also told me that with mucinous cancers, CT scans often don't show recurrence.  He described it to me as taking a scan of a room painted white and then painting it green, taking another scan and it wouldn't show any difference.  I found that concerning and asked how we would know if it was back, and he said he usually goes by symptoms (especially abdominal problems that have lasted more than 2 weeks). 

 

FWIW, I personally found UMD much more approachable than MD Anderson.  I know both are really busy but UMD took time out to call me quickly even though I wasn't a patient.  They also didn't charge me anything.  MD Anderson took a long time to respond, wanted all my records (which I understand), and tried to double bill me on stuff.  Again if I was in crisis, I would still go to MD Anderson if there were no other options but I wasn't super impressed with their customer service.

Ruffy

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

Thank you Ruffy!  It is so reassuring to hear from someone else who has been seen by the same doctor.  I will definitely check out that video...I am not sure at this point if I actually need the surgery...but the more information I have the better.  I want to be proactive and not sit by waiting until it develops into something that is more difficult to treat.

it is also reassuring to hear that the dr is being realistic about the scans...that they might not show anything but given my back pain and recent checks of my CEA that something might be going on...we just don't know what yet.  

 

UMD could have seen me as early as tomorrow...but I haven't been able to get my medical records until today.  I have been trying to get someone from the onc office to call me back for a week and a half.  It took a call from tHe Univ of MD to get someone to call me back and tell me that they are processing them.  I know it was not that they needed to have the request from another dr...I had to self-refer to UMD... Which is one of the positive things with my insurance...they allow self-referrals.

 alex

PS...Ruffy...your about me page is very similar to mine...June 2012...mine started with abdomen pain..CT scan revealed mucinous adenocarcinOma (signet ring) ...located at the base of the appendix in the colon.  I was 45 when they found it...so I was too young for routine colonoscopies.

marbleotis's picture
marbleotis
Posts: 527
Joined: Mar 2012

Maxi,

Has your cea been moving?  As you know I am also signet cell so this info really interests me too.  My cea is very low and has remained very low.  Small ployp at colonoscopy removed and not cancer.  But if remained....well we know that answer.  All my CT's are good, but it seems from the info above that signet may fool a CT, so CEA comes into play.

Since I had the polyp the gastro recommended the full genetic ( genetic was done at time of removal of the tumor) and Lynch was not found.  The genetic testing came back really good.  This was a big relief, especially for my kids.

This is so confusing as I am sure you know.

Since my CEA remains low, I am NED in a watch mode, but this info is priceless, just in case.  That always looms in the back of my mind.  I was Dx'ed at 49, with no classic cc symptoms.

Best to you, as always.  please keep us posted!

marbleotis

 

 

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

Hi Marbleotis,

my CEA has always been very low...right before my colon resection it was only .9 and I had not had any treatment yet.  It stayed the same at the next check.  Then they went several months where the dr did not check it (even though I kept asking) ... They waited until after I had the liver issues (which we figured out was due to the Neurontin that I was taking for the neuropathy) in February.  It wasn't until I developed the back pain (was sent for X-rays that showed just the beginning of degenerative discS...nothing that should be causing this pain) and asked again for the Dr to check it.  He finally checked it in March and found that it was almost 10 times higher than it had been when I was first diagnosed.  While my CEA is not high...it may just be that it it is not a good indicator for me...but with it jumping so dramatically since the October check combined with the back pain he was concerned that it could be an indication of activity.  In the last week I have also been experiencing mild diarrhea and loose stools.  I have tried bulking up my diet to see if that helps.  I have an appointment on Friday...I have not had a colonoscopy since last June...so I am going to ask if it is time.  The good news is that he did check my CEA about 2 weeks ago and it did drop a little.  Oh, and the first look at last week's CT scan looked good...it is being rereviewed this week by another radiologist

I have heard others talk of CA19-9 I think it is...another cancer marker.  I don't know if there are others that would be better indicators for us signet ringers.  I have heard others on this board and on other boards say that sometimes CEA is not a reliable indicator. Like I said before, this dr is treating it like a variant of colon cancer.  i have not had any of the genetic testing done yet....he told me it was not necessary and that a lot of times insurance won't cover it.  I have since found out from the insurance co that they do cover it and that it is something I should get done just in case I need to go back on chemo at a future date...this will help them figure out which cocktail will work best?

alex

Sundanceh's picture
Sundanceh
Posts: 4342
Joined: Jun 2009

Hi Alex

Saw you mention CA19-9 and thought I would stop by a minute.....

It is another cancer marker...it's 2-fold for testing really...it is one of the markers that is used for Pancreatic Cancer...

When my cancer first migrated to my liver...they did a CT and PET and saw a mass on what they thought was my pancreas...that was a little scary and so they had me in for bloodwork and that's when I first heard about what this test was.

Fortunately for me, the cancer was in my liver (then) and not my pancreas....but the doc also explained to me that CA19-9 is also used as another marker for colon type cancers and that they use that number as a gauge in conjunction with CEAs...and of course, scans.....between the 3 they make their best assessment.

So, it's a good marker to use to track with.....normal range is 0~37........I've been in the high 700's years ago.....last couple of years it trended upwards.....and then it trended downwards...and now it's inching back up.....sitting at about 123 last count.

I don't know why the numbers won't fall in range here....lowest I ever got was 103 and that was about 6-months ago....it has risen since then, but I'm not overly concerned. 

I know if it had been pancreatic cancer, I'd have been gone long ago....'cause that was back in my 2nd year....and I'm about to make 9 soon....

But, I still like to see the reading anyway and have asked my onc to keep ordering the test....they already have my blood samples, so I figure why not.  Unlike CEA though (which comes back quick)......they have to send my CA19-9 out to another lab, so it's a week or more before I can view them online.

The test just gives us another tool by which to measure our progress.....and that's a good thing:)

jrh1212
Posts: 6
Joined: Aug 2012

Hi Alex,

I've been reading this site for several months now, and have been wanting to reach out to you... I was diagnosed July 2012 with Appendix cancer, signet ring cell.  Mine was discovered accidently during a routine partial hysterectomy.  My GYN was supposed to take just my uterus, but thought my ovary looked "funny".  Turned out to be  Kruckenberg tumor.  Went through a series of tests and a ct scan identified an enlarged appendix.  In August they attempted a CRS/HIPEC, but couldn't finish (they removed the appendix and did a hemicolectomy) because my mesentery was covered with small (polka dot-like) tumor.  So I did 12 weeks of FOLFIRI/ERBITUX and went back for a scan and an exploratory look, and was "borderline", so did 12 more weeks of FOLFOX/AVASTIN.  My scan from last week showed no changes, so I'm now scheduled for another exploratory look in a couple weeks, and hope that they can then try the CRS/HIPEC again in May.  I've been working with Dr. Laura Lambert at UMASS near Boston, and have been part of a support group on facebook specifically for Appendix cancer.

From the Facebook group, I have learned quite a bit about this disease, they are a wealth of information.  I hear Dr. Alexander/Dr. Hanna are very good, and I think its an excellent idea that you are getting a specialist's opinion.  This signet ring cell pathology is nothing to mess around with.

Feel free to ask me anything I may have learned so far in this journey... Good luck at your appointment!

Jenn

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

hi Jenn,

I I have heard a lot of good things about UMASS.  It sounds like you have been through so much...with 2 complete cycles of chemo and a postponed CRS/HIPEC.  I hope that the exploratory look gives you the green light for HIPEC.  From everything that I have read, HIPEC is our best option for fighting signet ring.  I have had so little information on signet ring from my oncologist that I now am at a point where I don't trust him...I don't think he really knows very much about signet ring.  I am so ready to see a specialist...even if he tells me nothing new...at least I will have some peace of mind.  

I don't know what dr Hanna is going to tell me.  I just want some direction with this.  I am not sure if I need to go to the extent of HIPEC... Maybe I will be lucky like Marbelotis and he will just tell me that we are in a wait and see period...that it might not come back.  If he tells me that they want to do Ann exploratory laproscopic surgery ... I will do it.  Whatever it takes to get the answers to my questions.

what is the name of the FB group?  I did join PMPBellybuttons on Yahoo.  I am not sure that I even have peritoneal activity yet...but they were very helpful in comming to a decision on who to choose as a specialist.  There are other specialists that some of them have been to...if it does come down to the HIPEC I might also look at Dr Sardi, Dr Mansfield's group, or even doing a single service contract and going with Sugarbaker (he is local).  For me the travel and time away from my young family is also part of the decision process...but if I have to I will travel to another state to get what I need To fight this.

Thank you for reaching out to me...lets keep in touch.  Please post when you find out the results of the exploratory.

alex

marbleotis's picture
marbleotis
Posts: 527
Joined: Mar 2012

Maxi,

 

I was asking my Onc about HIPEC when I was on treatment #3.  I was nutty and read alot on google - mistake. 

That is something that may come into play in my future.  Not sure.  There are also some good drs at Chapel Hill too.  They are on my radar. 

Was yours apendix cancer signet cell?

 

 

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

I agree...sometimes google is not my friend.   I have done a lot of research along the way.  I am not ruling HIPEC in or out.  If the specialist recommends it I will probably get one more opinion and then go with it.  I want...no I need to survive this.  I have already found out whih specialists will be the easiest to get access to with my insurance.... we just need to get in and be seen.  If he tells me that the best course right now is to wait then I will be okay with that.

 

the jury is still out on the primary source for my cancer.  The tumor was growing from the base of the appendix..overlying the entire opening of the appendix into the full dimension of the colon.  It was 5.5" wide.  This dr didn't think that it was important because he was going to treat it like a variant of colon cancer.he said appendix cancer vs colon cancer it would be treated the same.   I have since learned differently from others that there are other things to think about with the signet ring component.  I will of course be providing the new doc with all of the scans and will be getting the pathology info over to them.  I need to get the pathology part ordered from the hospital tomorrow.

abrub's picture
abrub
Posts: 1543
Joined: Mar 2010

The FB group is the PMP/Appendix Cancer Support Group.

 

Alice

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

Thanks Alice!  I am not really face book savvy..I have an account but never really used it.  I will give it a try.

jrh1212
Posts: 6
Joined: Aug 2012

Hi Alex,

Yes, I'll definitely let you know how I make out with the exploratory surgery... I'm keeping my fingers crossed that they go forward with the CRS/HIPEC, because, like you said, I understand it is my best chance to beat this.  Like you, I have young kids (a single Mom to 6 yo twins) and I want to be here for them!

The facebook group I mentioned is http://www.facebook.com/groups/PMPAppendixCancerSupportGroup/.  Its a closed group, so you request access, and someone will approve it.  There are several people on there that are signet ring cell, and are at various stages of this fight.  The people are a wealth of info, and one of the first things they recommend to people is getting in to see a specialist -- so, I'm so happy you are doing that!

Good luck at your appt, I'll be looking forward to hearing how you make out...

Jenn

 

marbleotis's picture
marbleotis
Posts: 527
Joined: Mar 2012

Reading both your signet cell posts, should I also consider a specialist?  My CEA is very low and has not risen.  All CT's are clear.  The poly found was "pre-cancerous".  That has me convcerned.

I have no problem going, not sure if necessary, but might be a good sanity check.

I am in NC - know of any signet cell specialists in this area?  I may as well start a list - just in case.

Thanks

abrub's picture
abrub
Posts: 1543
Joined: Mar 2010

which isn't far from the border of NC.  He was my onc at Memorial Sloan Kettering in NYC (my surgical onc is still there - Dr. Paty.)  Dr. Ki-Young Chung knows appendix cancer well, came from the colorectal group at MSK.  He's now in a more general practice, but he's one of the best.

marbleotis's picture
marbleotis
Posts: 527
Joined: Mar 2012

Thanks that is close.

I do not have appendix ca, just cc with signet cell.

 

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

I just want to err on the side of caution...nothing may very well be progressing with me right now...but I want to be sure.  I look at this as peace of mind.  right now, I don't have complete faith in my doctor's handling of my case...I need that reassurance that we are being proactive And know what the next steps are...if or when we need to take them.

There is Dr Levine at Wake Forest...

http://pmppals.org/6/post/2011/1/dr-edward-a-levine-hipec-treatment-specialist.html

 

Alex

chp's picture
chp
Posts: 26
Joined: Dec 2012

I amo also signet ring cell, and even though I am stage 2 a, I am concerned that my local oncologist doesn't know enough about signet cell. I had surgery in Sept and am on my last round of Xeloda.  I have been worried that I should have also been on oxi. My main concern right now is that she doesn't want me to have another Ct. Scan until Sept.  I haven't had one since the per-surgery scan. I've been fighting with myself over whether to seek a second opinion. Am I making too big a deal of this or would you also be concerned?

Cathy

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