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

LearningAsIGo's picture
LearningAsIGo
Posts: 27
Joined: May 2018

Good Morning, 

We had our first meeting with the oncologist for my Stage IV, mets to omentum. I am healing well from surgery, removing colon mass and omentum mass. I’m not sure what I expected, but honestly if I hadn’t found this forum beforehand, she would’ve been talking a foreign language the entire time. She used a lot of sketched flow charts to tell me what chemo would be used depending on PET scans, and because my CAE was only 1, she seemed like watching for new tumors to appear on PET scan would tell her what move to make next. Plan is for FOLFOX every 3 weeks and Xeloda for 2 weeks, with one week off between cycles. I don’t understand why she’s not adding in Avastin with my Stage IV. We got the feeling it was because there were no tumors to monitor size, but it’s still metastasized! Have any of you had a similar experience? I feel like I want to be aggressive as safely possible. She didn’t really tell me an outlook, just at the end when I asked if there was hope said “there’s hope.” Will I be in treatment forever? It was a rather scary meeting, and I understand medical terminology well and advocating for myself no problem. I asked about supplements, and she said a multi-vitamin could help with recovery from surgery, and that she could schedule me with a nutritionist.  Does the relationship with your oncologist improve after the initial meeting? I am being seen at one of the best centers in the country, she just seemed to follow guidelines and not see ME, a real unique human-but maybe that’s how first meetings go? I had my mind pretty much made up to receive treatment here, because they are so well respected-but I just had hard time feeling cared for by her. Does this come more from the nurses? We still have a second opinion, which she encouraged, on Monday. Maybe putting the two meetings together will help enlighten us even more and not make me feel so lost. 

I know I asked a lot of questions, this has just become a safe place for me to seek answers from a truly wonderful group who has walked a similar journey. Thank you all!

-B.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Are you wondering if you should keep your oncologist or find a new one? If so, I think that if someone who is helping you live should be someone you're totally comfortable with. I didn't like my first oncologist and didnt feel confident in her. She ended up downplaying my blood clots and I had a pulmonary embolism and should not have survived. Everyone in the medical community that I encountered during my almost four months in the hospital after said it was from the chemo I was on. Except her. That really bothered me. And she was very nice but too meek for my liking. I want to feel confident in my oncologist.

On line she got lots of great reviews, people love her. But I changed to a new one because of my mistrust of her. My new oncologist doesn't get the greatest reviews, just okay. But I really, really like her and feel much safer with her. She tells me things so I can understand without talking over my head or being condescending. Talking to her is like talking to a friend. But I appreciate her abilities as an oncologist. She had my tumour tested to see what chemo would be effective against it which the previous oncologist hadn't done.

So basically, if you feel you're not suited to each other, ask for someone new. You must feel confident in the person who's going to save your life.

I would also take a recording device with you when you go so you can go over the appointment again later.

Good luck,

Jan

LearningAsIGo's picture
LearningAsIGo
Posts: 27
Joined: May 2018

Jan, this one just felt so “cookie-cutter” and didn’t seem to talk about me during the whole meeting-but rather what chemo she was using. I just expected more in terms of support, asking me if I had questions, etc. I left there feeling more frightened for my life than when I went in. It’s good to hear you made a positive switch and are comfortable with your new oncologist. Thank you for your thoughtful replies, I’ve come to look for your thoughts on here-you have such a solid foundation on which you’re facing this, and I am inspired by you! -B.

SandiaBuddy's picture
SandiaBuddy
Posts: 1177
Joined: Apr 2017

I too, made the oncologist switch.  The first one was slightly antagonistic and certainly was not a partner in treatment.  Based upon a nurse's recommendation I switched to another who is entirely human (it turns out he has cancer as well--talk about promoting empathy).  I am very happy I made the switch.  It is your life that is at stake.  I would not worry about hurting anyone's feelings, it is essential that you get the best care available.

The referral to a nutritionist sounds like a great idea.  It seems that there are many non-chemo strategies to optimize your odds for survival.

 

LearningAsIGo's picture
LearningAsIGo
Posts: 27
Joined: May 2018

Thank you for reminding me it’s my LIFE. It feels rather out of control right now. I think I need an oncologist to be human with me, make me part of the team and help me take back some semblance of guiding my life. I’m also looking into reputable integrative oncologists in the Pacific Northwest, hoping they can work with my chemotherapy but give me a better understanding and guidance about vitamins, supplements, and whole body care. It just doesn’t feel like I’m going to get that from this oncologist, and building a team around me makes sense. As always, thank you for your input-it is truly appreciated. -B.

Tunadog's picture
Tunadog
Posts: 235
Joined: Mar 2017

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.

LearningAsIGo's picture
LearningAsIGo
Posts: 27
Joined: May 2018

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
Posts: 9
Joined: Jun 2018

You will spend a lot of time with your oncologist and need to feel comfortable. I'm at MGH and after a few visits of not feeling any connection, I requested a different doctor. Best decision I made. 

Lovekitties's picture
Lovekitties
Posts: 3372
Joined: Jan 2010

I was advised to up protein to help with healing.  I drank Boost with extra protein.  You can also use creamy peanut butter.

If you don't feel that your onc is treating you as an individual, then you should shop around for one that sees the uniqueness of you.  Without a very good relationship with your doc you will not be getting all that you can even if the treatment plan is the same, the comfort and belief that you are getting only the best will not be there. 

Best wishes, Marie who loves kitties

 

Mikenh's picture
Mikenh
Posts: 779
Joined: Oct 2017

I went with the oncologist that my GI doctor recommended locally but will be switching to Dana Farber for surveillance - mainly because I won't have to go in very often and he works with my surgeon. I think that the oncologist at my local hospital is overworked (indication is that it's hard to get appointments with him and he was the only oncologist there last year which meant that I had to schedule around his vacations and other time off). He was trained at Dana Farber too.

I think that fit matters as well.

LearningAsIGo's picture
LearningAsIGo
Posts: 27
Joined: May 2018

Thank you all for the encouragement. It feels like I’m on a runaway train right now. I sent a lengthy email to the first oncologist today, with clear questions and am hoping to get a better feel for her, see a different more human side, and have some things clarified for us. I’m empowered knowing some of you switched oncologists. So have any of you received Avastin in conjunction with Xeloda/Oxaliplatin or NOT? What were the reasons?That’s another one of my concerns-why is she treating me like Stage 3, when I am Stage 4?

abita's picture
abita
Posts: 1022
Joined: Dec 2017

I was diagnosed as stage 4. Colon tumor removed as emergency a couple days after I was diagnosed. I got 4 rounds of folfox before liver surgery, had 2 more after surgery, had reaction to oxaliplatin, finishing the rest of my 12 rounds on folfuri. I never got avastin. I have Leucovirin. I wonder if that does the job of avastin. 

abrub's picture
abrub
Posts: 2166
Joined: Mar 2010

tho my surgeon told me that if I had been treated now, and not 10 years ago, I wouldn't have received the Avastin.  I don't know why.  My chemo was Folfox plus Avastin.

I agree with the others - you have to be comfortable with your oncologist.  You need to be able to bring up any and all concerns and know that you are being heard.  See how she responds to your questions and find out.  Mine was good, but I did have to hold him in the room to get him to answer questions.  My surgical oncologist it super (and he's following me now, as my oncologist moved to South Carolina.)

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

When I was on oxyliplatin that was all I was on. I've been on Xeloda but it was over a year later. I've never been offered Anastin. I don't know what it's supposed to do. Sorry.

Jan

abita's picture
abita
Posts: 1022
Joined: Dec 2017

btw, Folfox is a trio. Oxaliplatin, 5fu, and Leucoverin. My guess, and only a guess, is that Leucovrin and avastin do the same thing. Xeloda is the 5fu in pill form. I get the Oxal and Leucoverin in the infusion suite, then I get a take home chemo device that infuses the 5fu for 46 hours. My cycle is 2 weeks. Folfiri is the same, except I get Irinetican instead of the oxal. Anyway, the 3 work together to attack the cancer. Each in a different way. You should have an oncologist that you feel comfortable with. My oncologist will answer any question I ask. And one time, I had to wait for a chair for over an hour. This was right before my surgery. It gave me too much time to think. I got upset and thought it was about the wait. The nurse called him, and he came and sat with me for 30 minutes, even though he was busy, and helped me understand the wait just gave me time to dwell, and I talked to him about how scared I was about my upcoming liver surgery, and he sat with me talking until I felt better. It was actually something someone said on this forum that terrified me. And he helped me see that that person was wrong. So, yeah, having a doctor you are comfortable with makes all the difference.

 

 

Ruthmomto4's picture
Ruthmomto4
Posts: 694
Joined: May 2013

Leucovorin is florinic acid it just helps the drugs work better. Leucovorin is a reduced folic acid.  Leucovorin  is used in combination with other chemotherapy drugs to either enhance effectiveness, or as a "chemoprotectant. Avastin is a drug that cuts the blood supply to tumors. It interferes with the growth and spread of tumors. 

Ruthmomto4's picture
Ruthmomto4
Posts: 694
Joined: May 2013

the first was a horrible, rude, mean hearted man who called my husband a moron and me a cry baby. It took me 7 years and my husband almost dying to finally get rid of him. He was local and quick, but he missed things and was just awful. The next one was very kind, sweet,  but slow. We only left because the third one set a plan in motion and was willing to give it him but we didn’t feel like having a middle man so to speak. she is very nice a bit mechanical and impossible to get on the phone ever, she also made promises she couldn’t keep. So with that we found a surgeon at Sloan and another oncologist who does his HAI pump chemo. I have not met her but my husband loves her and said she is super chatty and very nice. 

My point is they are all so incredibly different keep looking until you find one that makes you comfortable because this dr is important and you need to be comfortable and you need to feel they are doing exactly what you need. Good luck it sounds like your instincts  are telling you what you need to do you just need to listen.

LearningAsIGo's picture
LearningAsIGo
Posts: 27
Joined: May 2018

Wow Ruth! I am even more motivated to find an oncologist whom I’m comfortable with after reading your story. She did respond via email within 2 hours of a lengthy list of questions I had for her. I appreciated that promptness, it’s just a little scary to not feel “seen” and our very first ever experience in an oncology clinic was with a doctor rattling off all the possible chemo scenarios with a flow chart. Thank you for your reassurance to listen to my intuition-I do think this Dr. is very capable, I just need to feel trust with her.

-B.

Annabelle41415's picture
Annabelle41415
Posts: 6711
Joined: Feb 2009

Getting a second opinion is always a good option.  It sounds like you are not very happy with her approach.  Find another doctor.  Didn't like mine and just wish I'd gone that route.  Wishing you the best and let us know how it goes.  Going to the best hospital in the world doesn't make the doctor the best in the world.

Kim

LearningAsIGo's picture
LearningAsIGo
Posts: 27
Joined: May 2018

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.

Annabelle41415's picture
Annabelle41415
Posts: 6711
Joined: Feb 2009

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

PamC
Posts: 9
Joined: Jun 2018

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.

Kazenmax's picture
Kazenmax
Posts: 450
Joined: Feb 2016

I have had a recurrance of rectal cancer in my lungs. I had lung surgery and the nodules were removed. My surgeon said I was NED. My oncologist recommends folfiri-5 and avastin (bevacizumab). I don't understand this either. I do not have any tumors. If avastin is used to cut off blood supply to the tumor, why would I use it when my tumors are gone? 

I will be asking my oncologist when I see him next.

k

Betsydoglover's picture
Betsydoglover
Posts: 1256
Joined: Jul 2005

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

LearningAsIGo's picture
LearningAsIGo
Posts: 27
Joined: May 2018

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.

myAZmountain
Posts: 405
Joined: Apr 2018

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. 

Kazenmax's picture
Kazenmax
Posts: 450
Joined: Feb 2016

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

K

darcher's picture
darcher
Posts: 299
Joined: Jun 2017

  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. 

 

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

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$$.  Wink Traci

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