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Seeking your wisdom...

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

Hello to all. I have not been posting much lately and what little I have done has been primarily on the anal cancer board. The following is a copied version of my post there earlier today. I decided to post it here as well because I am seeking the wisdom of any of you that care to comment. Truthfully, maybe I am feeling needy and a cyber-hug from my semi-colon family would be comforting. I am following along on all of your ups and downs (love those ups) and as always hold each of you in high regard as we travel this journey.

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Hi everyone.

Well today was the post VATS procedure visits. The visit with the thorasic surgeon went well. Incision healing, post chest scan looked so much like the before, he had to double check that he had the correct one. No fluid in the lung, breath sounds are great, I am completely asymptomatic, he was pleased. "Yes, it is sqamous cell anal cancer in your pleura; the thickening we saw on the PET and 2 other tiny spots". He said "you will get some chemo for this and I expect that you will be around for a long time".

Now on to the MED/onc. She walked in with a gloom and doom attitude. All apologetic for what the VATS showed, sorry about how things are going, yada,yada,yada! Her exact words were...well I think we need to get started on some chemo and "buy you some time". She said at this point, we cannot cure you, just treat you. I came unglued! I don't know what I was expecting, but it sure wasn't her acting as if she was writing me off! I inquired about what chemo she would suggest and she had three of four ideas, but could offer me nothing in respect to substantiated or documented effectiveness of any of them. Would just be trial and error. Do some for a couple of months, do a scan, check effects, continue or try something else, based on results. I had inquired previously about her contacting Dr. Cathy Eng at MDAnderson in Houston. They see a LOT of anal cancer there. She had not done that as of today. She said she could certainly try, but when I said I would just gather my records and fly out there for a second opinion, she said...that might not be a bad idea. I do not consider myself highstrung, but I am opinionated and have no problem speaking up. I want someone in my corner that is willing to step outside the box, be innovative and aggressive. Especially when we are talking about my life here! My husband remarked the first time that we met with her that she seemed, young, meek and timid to him; I blew it off. I was so glad to get away from the original onc's. (the one that treated the original cancer) condensending attitude that I wanted to feel good about this one. Am I expecting too much? My head is just spinning; this is probably not making any sense, but I feel like I am going to explode! Perhaps I am out of touch with reality, DENIAL, there's a good word. Whew, ok...got that all out. BREATHE.

I told her "I'll get back with you on this and she said fine. I made an appointment with her for a month from now, with the agreement that she would work me in if I decided to see her sooner.

Thanks for letting me vent. Hoping tomorrow will be sunnier!!!

Regards,
Joanne

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RickMurtagh's picture
RickMurtagh
Posts: 584
Joined: Feb 2010

Good for you - get that second opinion (or third if need be). You are your own best advocate. I hope you find some reassurance at Anderson or where ever you seek it. Your current onc sounds like some that others here have had. I am surprised she did not talk about hospice. How can people so intelligent be so clueless?
Grace and peace to you - those are my thoughts and will be my prayer for you as you seek continued healing...

abrub's picture
abrub
Posts: 2094
Joined: Mar 2010

With 2 drs saying that I was very treatable, and should expect at least 10-20 years before recurrence, when I met with the gloom-and-doom doc, it didn't fit in. This was while I was trying to figure out what steps to take next for my rare (appendix) cancer. "Gloom-and-doom" blithely informed me that I had "garden-variety stage IV colon cancer, median life expectancy, 2 years, but with the unusual presentation I can probably get you 3-5." What is this, a prison sentence??? He is, by the way, a renowned expert at a major cancer center - I guess no longer an expert in appendix cancer. I should add that in his notes about me he wrote "patient showed undue distress, even when given encouraging information." (3 weeks earlier I had no idea I had cancer at all - it was a surprise finding during a hysterectomy.)

If I hadn't met with the other drs first (including a surgeon from the same cancer center) I would probably be dead by now, because he said so. I am happily, healthily still here, 3 years post-diagnosis, with a great long-term prognosis.

You need to get other opinions. Perhaps you could ask your thoracic surgeon for a referral. Of course, MD Anderson is one of the best.

Vent away - I couldn't stop fuming after I saw Dr. I. My family was waiting for my phone call following my 3rd consult, and knew something was very wrong when I didn't call to report back on the appointment. I had to go over what he said versus what the other 2 consults said, see where he was not seeing the same picture, and realize that I had to throw his information out.

Alice

Nana2's picture
Nana2
Posts: 255
Joined: Mar 2010

Joanne,
My husband was told he had no other option but chemo for liver mets from his colon cancer. We went for our second opinion and that Doctor gave us a much better option of surgery to remove the right lobe and ablate the mets on his left lobe. He is home recovering well from that surgery now. Find Doctors that think outside the box. I hope you are able to go to get that second opinion and get some kind of positive and hopeful encouragement like we did. If you're feeling down, get on here and vent and get positive feed back from the folks on here. They have been such a help to me for my husband.
I'll keep you in my prayers.

(hugs)
April

amyb15's picture
amyb15
Posts: 109
Joined: Jun 2009

I think it is terrible when they tell you something like that. My sister had a similar experiance at the time she was diagnosed.(3/09) She currently looks like the picture of health and is feeling good most of the time.No one knows except for God when our time is up. They should not be allowed to use those terms. Who knows, a 2nd opinion might have something else to offer. Also, they are always coming out with new drugs and procedures. Never, never give up. It was nice to see you back on this board. Please keep us posted.
Amy

janklo
Posts: 23
Joined: Mar 2010

I do not understand why someone would go into oncology as a medical speciality unless they could constantly be cheering their patients on to a cure! I had this experience with my daughter, the surgeon was the most positive person ever and he said if you can just make it through 18 months, it's all downhill from there, you can do it! But the oncologist acted like it wasn't worth her while to put a lot into the treatment. Once she started her treatment and her CEA numbers dropped, then the oncologist became more engaged in her case and seemed to have hope. But, really you need that oncology doc on your side offering you every possible option and always always having hope! With the cutting edge medical research we have today, I refuse to believe there's not always hope for every little thing that happens. Joanne - do not ever give up, just keep fighting!

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

I was blessed with a very positive onc and surgeon. Their upbeat and 'you will beat this' attitude made everything a lot easier. I'm glad you stood up for yourself!

Here is a {{HUGE hug from me}} with loads of positive thoughts and prayers!

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

I'm sorry about your bad experience. We have been lucky, while our onc puts it on the line as far as what we are looking at, he always gives you mountains of hope, George is doing excellent and always ends the appointment by telling us not to worry so much, that is what we are paying him for and I might add that any little, tiny or big question I ask is answered so we understand all. If I ask about a specific treatment, i.e. RFA, cyberknife, etc. he calmly explains why that is not possible, at this time, and why. He has never given us any time line, in fact, he tells me don't worry so much, George will be around a long time, even with the mess we are in. He is a little older man so maybe he has just developed a good bedside mannner. He is also very experienced in treating colorectal cancer.

If this doctor leaves a bad taste in your mouth so to speak then your confidence in her is gone. Now, if she is tops in oncology then stick with her and overlook the attitude. It is skill you want now. I don't know what to do from a doctor is unacceptable, you have too much at stake.

Take care - Tina

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

seems there are a lot of them around. Definitely seek other opinions, outside of your current onc's practice, and go from there. Be your own advocate, let the doctors know that you expect to survive this and expect them to do their best to help you in that endeavor. I love my onc, mainly because he listens to me; after all, it may be his profession, but it's my life! Fight on Joanne and you will find the right onc for you, one that realizes that there is hope out there!
mary

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Joanne,

I'm so sorry that doctor was so negative! Just doesn't sound right after what you had just been told! Keep being your own best advocate!

*hugs*
Gail

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

It is strange that she would have such a negative view after such a positive response from the surgeon. It may be simply as your husband has perceived, inexperience. She sounds like she may be out of her depth.

You need a strong, experienced clinician who is not daunted by your cancer situation. Why not get a consult from Houston and then have your local Onc follow the plan from there. It would be nice to have them working together. Are there other local oncologists.

On the really upside... you are pretty clear about what your needs are! Can't go wrong there. Stick to you guns!

TTFN... Rob; in Vancouver

pf78248's picture
pf78248
Posts: 209
Joined: Jul 2008

Joanne,

My husband David is a patient in the GI Clinic at M D Anderson where Dr. Eng practices. He has another Oncologist and Surgeon. We have nothing but positive to say about the treatment and the optimism of the whole staff. We just wished we had not waited so long to get there. You want Drs who are experts and up to date but who are aggressive and positive, too. Call and refer yourself. It takes a few weeks to get in, but it is so worth it. I don't think David would be alive today unless we had made the decision to go. I promise you wont regret it.

Best of luck whatever course you choose. Just remember no one cares about your care as much as you and your family.

Hugs and Healing,
Priscilla

greybeard64's picture
greybeard64
Posts: 254
Joined: Mar 2010

definetly get that 2nd if not third opinion, She is not the ONC you want.
Big hugs to you, and way to stick up for yourself, as others have said advances, new stratagies....are coming out every week it seems. Find that positive attitude that seems to match your own. You desrve an ONC who will fight right along side you with the same positive attitude. good luck to you and a big HUG from me
chris

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

That they are only limited beings also to what they know so the area and height of expertise they were trained in may be the limits of what they can do. I haven't seen to many that will openly admit that you need to go somewhere else for better treatment but look at this...survival rates have higher percentages in different parts of the world. It does make sense that oncologists expertise would rely on where they did their training at, a cutting edge teaching facility or an older resident oncologist that may be to long in the profession to learn about new procedures or simply getting ready to retire and don't have the pizazz that they once did. Its maybe she has come to the end of her expertise and doesn't want to admit that she may not have the knowledge to take you any farther through this journey. Give her the benefit of the situation and simply pack your records (and bags) if possible and head to your next choice. Yes, be your own advocate, never let someone tell you the game is over simply because their set of rules have run out. There are always different rules to every game. I try and never burn bridges cause ya may have to cross them again someday....but yeah get a game face on.....

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