Need signet ring cell help

[chp]

In September, it will be 1 yr. since my colon resection-- stage 2a. II received 8 rounds of Xeloda. In Sept I will have my first ct scan since my before surgery scan. I asked my onc her opinion on ct scans reliability spotting signet ring cell, her reply was that she follows national standards and if that if that's not what I want, then I could find another doctor-- so much for questions. Maybe I'll have better luck asking my questions here:). What is the best way to try to stay on top of this beast? I don't want to wake up one day and find out it's spread everywhere and I had no idea. Are pet scans any better? Should I push for a hysterectomy-- onc doesn't feel it's necessary, but I know it's a likely spot for signet ring mets, and at 58 I really don't need any of it . I know this post is rambling, I just feel so lost right now. Does anyone know of an onc that specializes in src who's located anywhere near Georgia?
Thanks!
Cathy

[magda12]

Hi Cathy!

I'm running across the same problem w/ my dad's care. We have Kaiser and they seem to want to stick w/ the standard and pay no heed to the danger in SRC. I'm not sure what insurance you may have, but I would try to get a second opinion if this onc is only willing to do the least she can do (sorry, but that's what it sounds like.)

I don't think a hysterectomy is a bad idea, especially since you seem okay w/ it, but hopefully more people w/ experience w/ SRC in ladies will chime in. Radical, yes, but SRC is nasty. I'm glad you're only 2a... I think you're totally right to be careful. It's the right attitude when dealing w/ this beast.

Good luck!

Hugs and Best Wishes,
Magda

[Bev G]

I'm sorry I have utterly no expertise in SRC, but have gained a healthy respect for it through my friends on the board. I will say however that if your onc's response was typical for her, I would find a different onc. I'm sorry you were subjected to a "correct" but very impersonal, uncaring response from your doc.

If you're close to Atlanta, have you thought about Emory?

Best wishes to you.

Bev

[janklo]

I'm a veteran of a signet cell battle with my daughter. The huge problem is the tendency for it to go to the peritoneal cavity. Then it's too small to show up on scans until its larger (1 cm). It doesn't show on scans, doesn't always show in tumor marker tests. Your best bet is to be proactive. I would try to find a university type research hospital, they would maybe have signet cell experience. And I think a hysterectomy is a good idea, since you are 52. I could write a book about my opinion on this but just ask whatever questions you have!

[Dori]

I'm sorry your doctor responded that way. You might consider getting a new one if that is an option for you.

I had stage IIIC SRC colon cancer. I did not have a full hysterectomy, but I did have both ovaries removed at age 43. It was not that long after finishing chemo and I had atypical looking ovarian cysts. My oncologist assured me they were not cancer, but I requested a second opinion with a gyn oncologist/surgeon. I asked him what he thought I should do and he said I should have them removed, so I went with that. Thank goodness they were not cancerous. Who knows if cancer might have grown there with all that abnormal cyst activity going on.

I had a similar experience with having the standard protocol for colon cancer despite the aggressiveness of signet ring cell. The only difference is that I was able to ask for more frequent PET/CT scans and I had good insurance that was willing to pay for them.

I wish you luck. This stuff (SRC) is so scary. Having said that, it is good news that you are stage IIa.

Take care,
Dori

[janklo]

Like Dori said, you should at the very minimum more frequent ct or PET. Lauren had them every 3 months to check for recurrence. If your onc does not believe that, she's not following standard of care for src. One of Lauren's doctors favored MRI for src.

[jacekica]

I am SRC also, now is more than 2 years after sugery and no one sends me to CT, they say I am healthy....and I am affraid,a friend had SRC and he has peritoneall sread and is on chemo for life (57 chemo so far). If I ask about gyn surgery they look at me like I am lunatic, so I just wait, we don't hve somany options here like you in SA, and noone even think that SRC is so different and nasty.
SO, yes, you change the onc ot just go for econd nd third opinion when there is so any ptions at your state.

[mstults]

I don't have src either and know very little. But, of you are already diagnosed with src I'd be as proactive as possible. I would think the problem would be getting them to do the test but sounds like you are way past that point. I would think a lot of people unnecessarily suspect src. Since you and your doctor know you have it I'd try to find one a little more receptive. Maybe she doesn't have experience and is trying to get rid of you without admitting it. Just a thought.

[mtlimpactfan]

Hi Cathy,
my DW cancer recurred back in June 2012, did 28 or so rounds of Chemo/Rad followed by an intensive 13hrs surgery. The pathology report suggested that some features of SRC was present in the tumor. That means that less than 50% of the tumor is constitued of SRC. Nevertheless, our medical team took no chance and proceeded with a perm ileostomy, full hysterectomy (she's 41 y.o. / 2 healthy kids!)and also partial vaginectomy. Unfortunately in my DW case, she also had a positive margin which we had hope that the follow-up chemo (12 rds FOLFOX) would clear-up but we're now waiting for other results to confirm this issue.

Our medical team (radiologist, CR surgeon, Onc, etc.) was unanimous: when dealing with SRC the most aggressive approach is required. My wife is getting PET scans every 3 months. The latest on showed some activity (4.7 SUV index) just 30 days after finishing 12 rounds of Folfox. We believe that it is all related to the fact that there was a positive margin and that the mop-up strategy failed us. However, it seems very localized, close to the vaginal area once again and we think we can actually deal with this situation.
Thank god for the continuous monitoring...and good luck!

[chp]

Thank you all so much for your replies! I'm seriously thinking about getting a second opinion from Emory's Winship cancer center. I emailed them, and they do have colon cancer specialists who have SRC experience.
Janklo --- go ahead and write that book. You've unfortunately had so much experience with this, and I for one, would appreciate getting a heads up about what to expect.
Thank you!
Cathy

[kiwiinoz]

CHP
I think that everyone on this board is saying the same thing. It is your life, your body and your risk. Having Angline Jolie (sp) raise the issue of proactive and preventative surgey I think it is a timely question. I for one would be removing anything I could to prevent a recurrance.

Oncs and doctors see a lot of patients and don't always make the right decisions. Perhaps the guidelines are to stop litigation....at the end of the day it doesn't matter as you are the one that has the best interest of yourself at heart. If you are not satisfied please find someone that will give you the treatment you want and need.

IIA is a curable disease and you just need to give yourself the best shot at a cure that you can get. I'd sacrifice a lot myself to be able to be at that stage with those options and it sounds to me like you have pretty much made up your mind and just want us to affirm what you think.

You are right, and we all agree with you.