February 18, 2015 at 6:58 am #86837pfox2100Member
Hiya. I had a resection in January of 14 then did adjuvant chemo for 6 months aFter with scans every 3 months. Over the past year they had noticed small spots on my liver and told me it was nothing to worry about and they would keep an eye on it. During this time all my blood work was normal. In December my ca 19 9 had jumped to 60, but did drop back to 10 in the beginning of Feb. I was told these numbers can fluctuate often especially after surgery and chemo/treatment. Well eventhough my numbers were wnl the little spots back in my livr was a recurrence and I had a second resection just last week. I too was told if mine came back it would most likely be in my liver as well. So I guess my biggest advice to you is be your best advocate, advocate for yourself and what your needs are, get answers. I hope you feel better soon and that you have some more info about what is going on, if anything at all. Hugs and blessings to you.
PorterFebruary 15, 2015 at 7:06 pm #86836gavinModerator
Yes from what you say it sounds like you are doing everything right and as far as drilling your onc goes if your scan shows anything up, good plan! And of course we will help too if we can. I know you say you live alone, but, now you have all of us as well in your corner! Keep coming back here, we are here for you.
My best to you,
GavinFebruary 15, 2015 at 7:03 pm #86835
I understand how you feel about telling family members. I can (most of the time) handle my feelings. But it’s so hard making your loved ones know that it is OK, no matter what happens. But they are adults and need to know so they can best support you. Some will accept this better than others. That’s life.
As Lainy said, you are doing all the right things. It’s easy to say but hard to do: Try to reduce your anxiety about the scan. Either way it turns out you have a plan on going forward.
DukeFebruary 15, 2015 at 4:11 pm #86834lainySpectator
Morning, Kathy. Well, I am so relieved to read that you have done all the right things. Awesome, BUT you should not be going through anything like this ALONE! Everyone needs a team, people they can talk to and rely on if needed. I feel the family especially has a right to know. It may lift a huge weight off your shoulders. CC Patients sure don’t need any added stress. I would tell your ONC about the bloating, could be just a digestive problem. So much changes after surgery. As said before hoping for a normal scan.February 15, 2015 at 3:37 pm #86833
You are all awesome. I am living with this anxiety alone as I don’t want to upset my children who live in NJ or siblings who live in FL until I get the scan results.
I have been going to UVA every 3 mo. for scans since surgery. The next one will be my 9 mo. scans.
I live 2 hrs. from UVA but chose this hospital because they have a very good liver transplant and resection team. I was told being all margins were clear chemo/radiation was not recommended after surgery. There is no doubt the surgeon saved my life. I did get a second opinion at Johns Hopkins in Baltimore.
The oncologist is a liver specialist and has a lot of experience with CC. All my other blood work came back good every time except for the 19-9 recently.
Thanks for all your encouragement and support. Believe me if the scans show anything I will certainly be drilling the oncologist. Let’s just hope it does not come to that.
It’s weird my stomach feels good in the morning but as soon as I eat it feels hard and bloated.
Sending love and good wishes to all.
KathyFebruary 14, 2015 at 6:36 pm #86832gavinModerator
Sorry to hear that you are having such a rough time right now. Glad to hear that you were able to have the surgery and also that it went well. I know that this is hard for you to write about, so please, no apologies are needed for rambling as you put it. You go ahead and ramble as much as you want to, and if it helps, shout and scream as well! We are here for you.
You say that you feel bloated right now. I have a question, do you have any swelling of the legs, abdomen etc? I too also agree with what the others say about seeking further opinions about everything. We are big fans of that around here. Here is a link that may be of use to you in that –
GavinFebruary 14, 2015 at 3:08 pm #86831
If you want any more encouragement, go to “General Discussion” and look for “a year later and a second resection…” from pfox2100. Should be close to the top. That’s a success story for all of us.
DukeFebruary 14, 2015 at 2:51 pm #86830
I agree with everything that has been said, especially getting a second opinion immediately. (Not sure how close you are, but Johns Hopkins has a great reputation overall – not sure about treatment of CC or how close you are. Hopefully others will comment or you can use the Search function.) My current onc is very traditional in her line of treatments. (BTW, I was not eligible for surgery but went straight to chemo.) Do not confuse enthusiasm for experience. There is no substitute for an oncology team that is experienced with treating CC. Your onc seems a little “relaxed” about a subsequent treatment plan.
Why are you having two days of scans? CT takes less than an hour. Not sure about MRI.
Are your other blood numbers in band? Alkaline phosphatase, billirubin, creatinine, WBC, RBC, among others.
Survival 50-50? Horse pucky. From what I’ve read here, 50-50 seems more applicable to needing further resections, not survival.
One year? Even deeper hp. I’m still going on chemo 20 months after diagnosis. And there are members on this site who have had resections who are living even longer and stronger.
Kathy, give yourself a big hug and feel the support from all of us. Pick your head up and take control of your life.
DukeFebruary 14, 2015 at 10:19 am #86829middlesister1Moderator
Kathy- As Gavin said, we’re all thinking of you and hoping for the best. Please let us know how you make out. However, I also agree with Lainy that a second opinion may be beneficial.
CatherineFebruary 14, 2015 at 1:38 am #86828lainySpectator
Kathy, Congratulations on having a successful surgery. I am wondering why the ONC would not follow up with Chemo due to being Stage IV. I am also wondering if your only Scans were scheduled 9 months later or did you have some in between. Most patients have scans every 3 months for awhile, I know my husband did. Most importantly I am wondering if the ONC/Surgeon has had some experience with CC. Honestly if it was me I would go sooner than later to a big Hospital and an ONC who is very well versed in CC. Listen to your inner feelings as they are really right on. Perhaps you feel scared as you may be doubting what has transpired. Please go for a 2nd/3rd opinion. You have come to the right place as we are all family here. Please let us know what transpires. BTW we do not take lightly to ONCs who seem to give up before they hardly begin. AND we were not born with expiration dates. Best of luck and please let us know.February 14, 2015 at 1:17 am #86827mattreidySpectator
We will be routing for you Kathy. I hope it’s all just a false alarm.February 14, 2015 at 12:58 am #86826
Thanks , Matt.
I will be going for my scans the 23rd and 24th (Feb).
I can only hope for the best and stay positive. I will post my results.
KathyFebruary 14, 2015 at 12:44 am #86825mattreidySpectator
My understanding is that CA 19-9 is not 100% reliable but anything over 20 could be an indication that something bad is happening and should be followed up on.
My CA 19-9 was over 400 prior to tumor resection and then hovered around 10 for a year but shot back up to 360 and they found a new 1.5cm tumor causing that. I’m about to start chemo for the recurrence .
I’d recommend you get your oncologist to order a scan asap.
-MattFebruary 14, 2015 at 12:29 am #10950
Hi, my name is Kathy and I am new to this site. As I read the posts it is heart warming to read how many people want to help through this journey of CC.
I am 66 and was diagnosed the beginning of April 2014 and had surgery April 30th.
I had a resection and had my gallbladder removed which was in stage 4. The surgeon informed me that all margins came back clear and that chemo or radiation was not recommended.
It certainly was a big surgery, but am thankful that I am alive.
My 3 mo scans were good. My 6 mo scans revealed my CA19-9 had increased from 10 after surgery to 136. I had it tested again 30 days later and it was 129.
My oncologist said that it is not the number but concerning if it doubles or triples.
Feb 2 my number went to 208. I have not spoken to my oncologist as he is out of state right now.
His secretary set up my 9mo. scans, blood work and appt. with oncologist.
I really have not felt good in about 6 weeks. Went to ER while visiting family in Fla. The doc said that he thought I had some type of virus. Then after coming home went to Dr. and he gave me antibiotics for sinus infection. I feel very bloated and uncomfortable. I am hoping the antibiotics are not agreeing with me, but have to admit I am really scared and can’t sleep. I live alone but after my scans I will be going to NJ to stay with my daughter for awhile.
I guess I am rambling but was wondering if anyone has any info on CA19-9 numbers.
The oncologist told me after surgery that my chances of survival was 50-50. If the cancer comes back he said it will probably be in my liver again or lungs. He said Chemo would then give me about 1 yr to live. God, its hard to write it.
I would appreciate any feedback on CA19-9.
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