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Thanks Lainy. Like I said surgeon is out of country and really hasn’t seen any of my reports and results so as of now this is based on what she has heard. The onc did talk to another oncology surgeon and they both confirmed that this lesion is in a “good” spot and can be removed. They have been watching me like a hawk and they have definitely been on their A game so in less she feels otherwise, I hope this plan stays in place!
Matt I’m sorry to hear about your news. I know another woman who I met online who also had what was considered a successful surgery and she too just found a reccuence and it was in her abdominal cavity as well. Seems like this is a common area for cc to met to or recurr? I agree with Kris, if your gonna do chemo a port is definitely the way to go. As u might recall I was on gem cis prior to surgery and tolerated it well with minimal side effects. After surgery I was put on Gemox and along with the cold sensitivity like Kris mentioned , I didn’t tolerate that regimen as we’ll and had more side effects and it dropped my platelets more frequent than the gem cis. Did you mention why they are saying it is not operable? Please keep us posted , many blessings and prayers to you Matt.
PorterOh Kris, sorry that you are going through this worry and that you are going through some physical ailments yourself. I think of you guys often and always hoping and praying for the best for you two. Please keep us posted. Many blessings and hugs to you and Mark.
PorterDuke , funny thing…I live in BEAVER country. We didn’t do too hot this year, so Im with you. Gotta go for those Ducks.
Hi all. I am struggling to stay calm, but trying. No new word, though no one from my team seems to be too concerned. They have reminded and assured me the SECOND they feel they need to move forward with anything and provide more in depth tests, they will do so. It’s crazy how one little number has completely gone mad
That being said, that number realistically could mean nothing. I did have it drawn on the 4th of December in Portland (where my team is/treatment/etc) and on the 18th in Corvallis where I live, and I had them draw in while I was getting my port flushed. I requested this draw on my own though my PCP. My oncologist has recommended to me to not do this anymore as far as request interim labs because I do get them drawn every 3 months and moments like this can just cause more anxiety on the patient. So they have said it could be a lab variability as they were two different labs. I will be having blood drawn and my next scan the first week in Feb. At times I can be very rational and irrational and I am aware of this. In a rational state of mind, I do realize that they are doing really what they think is best and two months in between scans and blood being drawn in my opinion is really staying on top of it and I have to remember that. My surgeons patient/scheduling coordinator has been an angel and we text on a regular basis. She is very comforting and also likes to remind me that there is team of experts that is watching my body’s every move, more than I know and if there is ever any reason for concern, they will take the appropriate next steps.
I also saw my PCP on Monday having a lot of bloating and intermittent pain (this is nothing new, have had this all along and since surgery) he just assured me there was no fluid in my stomach and had a total normal physical abdomen exam by hand, and for me sometimes just going in and talking to him help alleviates some anxiety. So i sit and wait until Feb and try and just RELAX my body and my mind. Thanks everyone for the comments, love, and support. Hugs and blessings to you all. I think of you daily!
Well that was short lived. My PCP just called to tell me my car 19-9 spiked to 65. Its been way wnl since surgery. Bounced around during chemo. But two weeks ago it was 15. This came as a surprise. Again, waiting to get a hold of my surgeon or onc to find out if they want to do anything. I.pray it has spiked for any other reason besides a recurrence.
Well that was short lived. My PCP just called to tell me my car 19-9 spiked to 65. Its been way wnl since surgery. Bounced around during chemo. But two weeks ago it was 15. This came as a surprise. Again, waiting to get a hold of my surgeon or onc to find out if they want to do anything. I.pray it has spiked for any other reason besides a recurrence.
Thanks all for your support. I am in a better frame of mind now that things have “settled” a little. MY surgeon came back to work and was quite upset when she found out my case was brought to the board while she was gone. So she re introduced my case when she was back and brought it back to the board so she could be a part of the large discussion. (I love her)…her his is response to me that was written “here’s the verdict: one lesion completely disappeared. One grew by possibly 1mm which is the size of a tiny pin head, and could also be a variable error. She agrees there is nothing to worry about right now and should get a scan in 2 months instead of 3. From the surgeons mouth as well “please tell Porter I am on her side and by her side every step of the way. Do not worry”
So this made me feel more at ease. i trust my surgeon with my life and take her words very seriously. So I am trying to put all this cancer stuff on the back burner for now and trying to just relax and enjoy my holidays and time with by 2 wonderful little kids (who also have birthdays within weeks of each other and Christmas this month) and savor all these moments while i can. Again, thanks everyone for the support. Happy Holidays to all.
Love and blessings,
PorterDuke, thank you so much for you input and words. You are really helping me through this more than you know. I have brought up the other ideas of PET, you know ONC said it’s so small that she thinks activity would even show negative on a PET scan. I have had MRI’s all along and the team feels this is best to continue and compare. I had such an awful experience the first time around being misdiagnosed and my mind trickles back and I start feeling those emotions of being so angry and scared. I am trusting in the fact that I am in much better hands and as my surgeons assistant sent me via text the other day “the team is watching you under a microscope every step of the way, I’ve been through so much and to keep fighting, and never stop. We are all fighting with you more than you know.” After hearing that I felt more at ease and realized I need to trust and let go and regardless things will be okay. I am trying to trust in what they say and they do know best. I do realize others have it off worse and I just hate that any one of us has to deal with this disease, or any cancer of any kind. But again, thank you so much for your support. I am going to do my darn best to enjoy this Christmas ( I really thought last year was going to be my last) and my 2 wonderful little kids, and try to put this on the back burner for now. Hugs and blessings to everyone. Lots of love.
PorterHi guys. Need advice. SO the multi team met. They still aren’t sure what we are looking at. All blood work and ca 19-9 looks gorgeous. Like I said the spot is 9mm. However what they are telling me to do is wait. I am supposed to sit and wait and we will re scan in 2 months instead of 3. Should I accept this? I asked about surgery and my onc said that well, it’s in a bad spot. I think she meant or clarified this was due to my previous resection. She said the surgery would again be extensive. I am guessing they are saying no to surgery as of now because this could still be nothing and they are not wanting to open me up for such a surgery if there is no need.? She also said as far as the imaging, this spot has no washout and is only showing up on one set of images (angles) rather than all angles including aerial and whatnot. And that is showing to be a positive aspect. CC is not time friendly with us. My surgeon who always looks at my scans has not had a chance to look at it yet but will as soon as she can and is back at the office (out of town). But does this seem like a reasonable plan? Continue blood work, and wait for 2 months? Ideas? Thoughts?
Thanks. I am super bummed i can’t attend. But I am a working woman again
and that’s a good thing. Otherwise I’d be right on this webinar.
Marion, I had one more question. Does size of tumor if removed during surgery predispose or indicate any likelihood of recurrence?
I totally forgot Ask Dr.Giles was a resource of this. So i definitely utilized that last night.
I am not able to attend the webinar, will notes and highlights be posted to this sight afterwards?
Thanks Marion,
Hugs,
PorterJulie, you know
that I struggle with this too. I still just can’t shake it a lot of days. Every little ache, nausea and pain I feel just makes my anxiety soar, and I assume the worst. You know I realize looking back on my life I tend to do this often. I have a hard time thinking positively in general (I don’t mean to) but it is something I struggle with and it’s a constant battle with me to change my train of thought. I just go into downward spirals. I am right behind you and getting my next scan the first week of December.
But I still try to change my thought process. I finally went back to work, and I just started working full time, TODAY! So that so far has been a great distraction from me. I got to stay busy when I feel up to I know that’s key as that really helps me stay distracted. I will be thinking about you and feel pretty confident your scans will be good! I have a good feeling! So if I were to take advice from myself: try and stay positive, instead of thinking about the what ifs or the bads, I remind myself of my joys and what I am grateful for (things that make me laugh and smile), and stay busy when you feel like it, keep distracted. Blessings to you.
PorterHI Marion, I have a couple questions and I hope they deem appropriate and not too vague. After my surgery I kinda felt like I lost my support team after I had been receiving care for many months, and kind of felt on my own…”just go on and live my life.” Which sounds great but for me was so much harder to do after I had my resection and adjuvant chemo. I guess my questions are along the lines of if you do have surgery…
1) What should you expect to feel emotionally and physically after having an extended resection, rouex en Y, etc? (Not necessarily right after but maybe months, even years down the road) For me I felt like I was just kinda let go with not a lot of direction or expectations as to what I might feel and physically I have realized I might have a new “normal.” I was kind of expecting for everything to go back to how it was before I was diagnosed. I guess just more in depth of what one might expect and experience.
2) Does diet play a role after surgery, should I avoid or confide in certain foods?
3) The latest on success and recurrence rates?
4) Should any dietary supplements or vitamins encouraged or discouraged?
5) How often should bloodwork or lab tests be done?
6) Aside from drinking alcohol, other things we can do to try and preserve our livers the best possible way we can?
7) Are there any specific medications that someone shouldn’t be taking after such a big surgery?I might come up with more. I do feel like these are kind of dumb and I have heard answers from some docs on most this stuff, but curious what Dr. Kato has to say.
Porter
