First Meeting done, more questions, how did you decide?

LearningAsIGo

Betsydoglover said:

Why Avastin when no visible tumors?

Avastin blocks the protein that allows tumors to grow their own blood supplies.  So, if your scans show no tumors, that doesn't mean there isn't cancer developing that is still not detectable on scans.  So, the idea is that Avastin could keep those tumors from developing, by nipping the growth of that blood supply before it is a big issue.  On Avastin for 2 years.  After my lung resection in 2009, here I am.

 

Staqe 4 diagnosis  5/05

Sigmoid colectomy

Liver met

Xeloda/oxy/Avastin for 6 cycles

NED

Aggressive monitoring

Lung recurrence and VATS 4/2009 (Avastin only for 2 years)

 

Still NED

Here was my oncologists’ reply

Betsy, Thank you for sharing your similar journey-mine has started much the same way as I read your bio. You mention aggressive monitoring, but have you done anything else as far as lifestyle/nutrition/supplements changes? That is the question we are asking ourselves-why is the oncologist not giving me Avastin in addition to the CAPOX...when there’s clearly been metastasis to my omentum, even though surgeon cut it out at time of my sigmoid colectomy 3 weeks ago. The oncologist responded to a lengthy email and says “adding Avastin would not be wrong, but typically it’s reserved for patients with unresectable disease or grossly measurable disease who needs indefinite chemo…. It’s not a type of treatment where we would decide to give for 6 months and then stop.  I believe that the benefit for someone like you right now without grossly evident disease would not be significant.  If you end up having recurrent disease and grossly visible metastatic disease, then we can add avastin then.  Opinion might possibly differ between providers.  I just talked to a colleague of mine before answering your email, and she would do the same.”

 

So, a lot of varying opinions I guess. I‘m so glad to have each of you as a sounding board and wealth of knowledge. I can’t believe how quickly this has become a place I reach for with questions and reassurance. I’m getting more and more worried about the omentum mass-as this oncologist also said she’d like me to meet with a HIPEC surgeon just in case. No one has told me I have peritoneal metastasis, but that’s essentially what that is indicating, if I am researching correctly? I had no idea that I could or would be on chemo lifelong-that was another surprise to us at our first oncology meeting-depending on PET scans from here on out. Again, learning as I go about a disease I wish never touched my little family.

-B.

darcher

No avastin here

  I was on Xeloda along with pre-surgery radiation and post surgery mop up for stage 3 rectal cancer.  I took it for about 5 months all together.  No mets at the time and even after surgery they said clear margins and zero lymph node involvement.  A couple  months later (this week) had a colonoscopy which revealed two precancerous polyps albeit in two different areas away from where the tumor originally was.  This disease is one sneaky diabolic SOB.  Any form of chemo is horrible to take.  Now that I'm off it I feel much better and can't imagine having to start taking it again.

 I found that the doctors I had were quite good.  I had two oncologists. one radiation and the other chemo. I didn't expect a bunch of sympathy from them and was glad they were fairly straight forward.  I know enough to know that I don't know which is what I told the chemo oncologist.  I told him, "if it were you, what would you do?"  give me the same. 

 

Kazenmax

Betsydoglover said:

Why Avastin when no visible tumors?

Avastin blocks the protein that allows tumors to grow their own blood supplies.  So, if your scans show no tumors, that doesn't mean there isn't cancer developing that is still not detectable on scans.  So, the idea is that Avastin could keep those tumors from developing, by nipping the growth of that blood supply before it is a big issue.  On Avastin for 2 years.  After my lung resection in 2009, here I am.

 

Staqe 4 diagnosis  5/05

Sigmoid colectomy

Liver met

Xeloda/oxy/Avastin for 6 cycles

NED

Aggressive monitoring

Lung recurrence and VATS 4/2009 (Avastin only for 2 years)

 

Still NED

Awesome

Thank you for the explanation. And so wonderful to see you are NED! Gives me hope.

K

Annabelle41415

LearningAsIGo said:

I read this to my husband Kim

I read this to my husband Kim, and you’re very right-he even said “true!” Best hospital in the world may still have an oncologist that isn’t right for me. I’m trying so hard to stay positive, this feels like a black hole right now! One day at a time and I’m going to try to keep empowering myself through education, the great folks on this forum, and loving my little family. 

-B.

Doctor

It's better to start out with having the option to move on.  Never found this site until after every doctor was scheduled to me (hated that) and never thought about changing because it was assigned.  Actually changed surgeons due to my primary care doctor's suggestion or otherwise never would have.  Just didn't like my oncologist and would give her a 1 star.  You can do much better and glad you found this site.  Hugs to both of you.

Kim

LearningAsIGo

Tunadog said:

My Oncologist is great..

I didn’t choose him, the pain in my butt made the choice.

He has explained everything is very honest and accessible. He always answers my emails or messages the same day.

My Oncologist makes me feel like a friend.

I hope you find one you feel comfortable with.

P.S. All of my doctors and nurses have been understanding and caring.

Thanks for giving me an idea

Thanks for giving me an idea of what a good team might look like. I appreciate your input. From some of your other posts, I think we may be on similar chemo- the Copax. I hope I can garner my strength to be successful through the cycles! -B.

PamC

LearningAsIGo said:

I read this to my husband Kim

I read this to my husband Kim, and you’re very right-he even said “true!” Best hospital in the world may still have an oncologist that isn’t right for me. I’m trying so hard to stay positive, this feels like a black hole right now! One day at a time and I’m going to try to keep empowering myself through education, the great folks on this forum, and loving my little family. 

-B.

The best hospitals will have

The best hospitals will have several oncologists to pick from. I switched after a few visits and was super happy. However, I will say what hospital you go to matters. Being in the best possible hospital is essential! My sister was being treated for breast cancer at the same time I was being treated for colorectal cancer and breast cancer (two primary cancers). She felt the hospital I had chosen was an assembly line and busy. I, on the other hand, felt it was better to be a number than be treated by someone that did not specialize in my cancer. She picked a subpar hospital and I worry she made a terrible decision and skipped chemo. When I wavered on a treatment or wanted to throw in the towel, my hardcore doctors would hit me with stats and important information why it was in my best interest to follow the protocol. Where you go matters more than anything in my opinion.

myAZmountain

LearningAsIGo said:

Here was my oncologists’ reply

Betsy, Thank you for sharing your similar journey-mine has started much the same way as I read your bio. You mention aggressive monitoring, but have you done anything else as far as lifestyle/nutrition/supplements changes? That is the question we are asking ourselves-why is the oncologist not giving me Avastin in addition to the CAPOX...when there’s clearly been metastasis to my omentum, even though surgeon cut it out at time of my sigmoid colectomy 3 weeks ago. The oncologist responded to a lengthy email and says “adding Avastin would not be wrong, but typically it’s reserved for patients with unresectable disease or grossly measurable disease who needs indefinite chemo…. It’s not a type of treatment where we would decide to give for 6 months and then stop.  I believe that the benefit for someone like you right now without grossly evident disease would not be significant.  If you end up having recurrent disease and grossly visible metastatic disease, then we can add avastin then.  Opinion might possibly differ between providers.  I just talked to a colleague of mine before answering your email, and she would do the same.”

 

So, a lot of varying opinions I guess. I‘m so glad to have each of you as a sounding board and wealth of knowledge. I can’t believe how quickly this has become a place I reach for with questions and reassurance. I’m getting more and more worried about the omentum mass-as this oncologist also said she’d like me to meet with a HIPEC surgeon just in case. No one has told me I have peritoneal metastasis, but that’s essentially what that is indicating, if I am researching correctly? I had no idea that I could or would be on chemo lifelong-that was another surprise to us at our first oncology meeting-depending on PET scans from here on out. Again, learning as I go about a disease I wish never touched my little family.

-B.

LAIG I had a similar

LAIG I had a similar presentation--a mass in cecum that spread to omentum, one lone encapsulated mass that was removed with clean margins, no positive nodes, but the cecal mass had spread to terminal ileum , had lap hemi-colectomy.  Had lung mets, originally thought to be only 2, one 1cm and one smaller. Only the large one lit up with PET.  I had my appendix rupture while visiting my daughter 2000 miles form home and had emergency surgery and treatment near DC. Oncologist there was somewhat aloof, mentioned HIPEC too, which will definitely give you pause for thought. But he also wanted me to have lung tumors resected --I dunno they certainly cause swirling thoughts. Anyway came back to AZ, our litle rural hospital is blessed to have a wonderful oncologist that is Mayo trained, I had a high resolution lung CT and the radiologist read it as probably tumors less than .5cm in other areas of both lungs. Wondering why the fany big city hospital didn't do that particular CT scan to start with...Anyway am on FOLFOX with Avastin--I think you have a valid question regarding why you aren't getting it? My CEA when disease first discovered was 25, went down to 1.7 post surgery, before chemo. Have not been retested yet. Do you also get other drugs with your chemo? I get Decadron, Emend, Benadryl, the Folfox, avastin , magensium and calcium evry 2 weeks. 

traci43

similar beginning, different treatment

I too had Stage 4 with mets to the omentum back in 2007.  I had FOLFOX with Avastin post surgery-12 rounds.  Avastin had only been approved 6 months earlier.  Even with no visible mets, they gave me Avastin.  I hated my first oncologist, he gave me a really poor prognosis and was very distant and cool.  I stuck it out until I finished chemo, but when the cancer returned a year later I dumped him for a really great oncologist.  I'm currently on my 4th oncologist, they keep retiring on me.  Ask the chemo nurses who they would recommend, they have great insight into who is a good doctor and who is just an A$$.  Traci