Should I get 2nd opinion?

jennyboog · November 2011

This might sound silly but I've been thinking of getting a second opinion. I understand there is a standard of care done by all onc and what's been done is done but I wonder what else could have or should be done, if that makes sense. I'm done with active tx and on an AI but I want more feedback from my dr. & I leave confused sometimes. Anytime I ask about any study...metformin, ER assay test, anything like that, I get "well, they're still investigational, blah, blah, BIG word, blah, BIG word, blah blah" and if I ask about any type of supplement, I get "they're fine". At my appt last week she didn't do a chest examine, which disappointed me. Am I being petty? Or is this what everyone is dealing with? I just want feedback, I want my onc to take an active role in my tx, I want to know I'm doing all I can to prevent a reoccurrence. Am I asking too much or am I just entering the next phase of this healing process? I know I should be moving on but I can't seem to.

sweetbean · November 2011

I think I am going to see the Block Integrative Center in Chicago in the spring. I want to know that my supplement/CAM regimen is appropriate for me. I am also going to get a second opinion about clinical trials from an onc in NYC. I like my onc, really I do, but I also believe in getting multiple opinions. It's cancer, which means it is officially Not Time To Fuck Around.

myrtle1 · November 2011

I know how you feel, Jenn. When treatment is done, you fell kind of like you were dropped off a cliff. You do have to have a trust in your docs, however. Is he/she a reputable onc? Is he/she affiliated with a large institution with a reputable cancer care department? Vitamin D is an essential supplement for breast health. Avoiding chemically laden processed foods and sticking to the basics such as fruits, veggies & whole grains is a good idea, as is regular exercise. Excess weight & body fat can raise estrogen levels. I am coming up on 3 years since being diagnosed with my BC. Had very aggressive chemo, 35 daily rads & now on AI. Had 10 positive nodes & a 1.9cm tumor. I was scared out of my wits every single day after treatment for at least the first year. As I come up on 3 years now, it's easier to breathe and enjoy life. If it make you feel more comfortable, by all means, talk to another onc dr. You need to be able to relax & enjoy life & if you feel you need more answeres, seek them out. But you are absolutely normal to feel anxious. Best to you, I have a feeling you will be just fine!!

myrtle1 · November 2011

Sweetbean, which hospital/dr are you seeing in NYC? I had surgery & treatment at NY Presbyterian/Columbia hospital in Manhattan. Was also in a clinical trial....best to you!! You are right about the messing around with cancer!! We need to do what we feel we need to do!! Best to you!!

christine47 · November 2011

Jennifer,

I am not stage 3, but saw your post. I see you are in NC (me too), there are many excellent onc centers in NC. You absolutely deserve an onc who listens to you and answers every question you ask. No breast exam last visit, are you kidding?? Run to your second opinion. Best wishes!!

Kay_G · November 2011

I couldn't agree more. We need to do what we feel we need to do. Jenn, if you feel your onc isn't paying the kind of attention that she should, or isn't as interested in trying something newer as you are, you owe it to yourself to get another opinion. At least that's my opinion. LOL

lanne · November 2011

Hi, I kind of had the same feelings. My onco is very clinical, here's the facts, this is what we have to do. I even asked him about getting a second opinion and he said it wouldn't change the test results to see someone else. And, you really feel like you have to trust in his expertise. I found that just having a long talk with my primary care physician helped a lot. He explained things in a different way that was easier to understand. But, I do have plans to see someone else, can't hurt, right?

Hoolianama0508 · November 2011

I was living in Orlando Florida when I was diagnosed and got my second opinion at Chapel Hill, North Carolina (a cousin offered to pay for my trip). I needed the second opinion for my own satisfaction. You must follow your gut feeling.

Sending positive vibes to you.

kathleen1966 · November 2011

Jennyboog, I feel the same way. My oncologist doesn't even know about the naratinib trial for Her2+ women, I wonder if I should switch to another oncologist who does know about this (this would not be that hard, but I am dragging my feet, not sure if I want any more "treatment")...I worry about my being 10% Progesterone + and not getting any anti hormonal drugs (I have asked many times and am always told I am clinically hormone negative)...especially worried now that menstruation has resumed (but glad to have the nice skin again)...I also still think about getting a second pathology report on my initial tumors, etc...I always wonder about those nodes, did I really have them, how much...was it an error...because they really never showed up on an ultrasound, MRI, CAT scan and barely on a PET scan (only one, very minimal uptake and it appeared benign on the CAT scan)...I think about these things all the time. Its almost like I need a once over before I can get on with "life"....I feel like all is not known, or something was missed, or a mistake was made...

Outfield · November 2011

Jenny,

I did get a second opinion a while back. I do feel like I should have done it earlier in the process, but I just couldn't handle doing that at the same time I was freaked out about my pretty agressive tumour. As it turns out, getting the second opinion didn't make me change oncologists. If anything, it made me see in a new light how reasonable and caring my oncologist is.

You mentioned about metformin. On the threads specifically about metformin, a number of posters have been receiving it from their primary docs. An oncologist is not likely to have prescribed metformin much, but a primary care doc will have prescribed it a gazillion times. My PCP didn't have any problem prescribing it for me. I actually never asked my onc to prescribe it - I assumed he wouldn't be comfortable doing that - but I did ask him if he'd think I were crazy if I took it. He said he wouldn't think so.

I was diagnosed a little more than a month before you were. It's a hard transition time, isn't it? I'm kind of back to normal life, but I think about my cancer probably every hour of every day, and certainly have enough nightmares too. It's hard to move on with this looming shadow on things, and I have a fear I'm going to leave a stone unturned if I stop thinking about it. I think if getting a second opinion can help you with peace of mind, you should do it.

jennyboog · November 2011

Thanks for your input everyone...I think I'd even be happy with someone just reviewing my records and saying "you're good to go". I guess all this stems from I can't even talk to my PCP, I really need to switch. She wasn't on board with metformin either and I think she is scared of me because of BC. We're military and have moved during this process so I'm on my 2nd PCP & 3rd onc and I have no connection to this one, I was done with tx when I went to her, I think that makes a difference. The grass is not always greener on the other side but how do you know if you don't go look. And yes, this is a hard transition time...harder than tx for me, atleast with tx I was doing something and had appts. Now, I'm out of work (trying to return) & want to do things but then again I don't, if that makes sense. I think I'm just in a weird spot right now. Thanks again ladies, ya'll are the best.

crabbiepattie · November 2011

Hi Jenny,

I'm on the 3-month followup schedule and my onc always does a breast exam. He also specifically mentioned exercise and weight loss (maybe I need this more than you and aspirin to reduce the risk of recurrence.Your onc does not seem concerned enough.

Speaking of metformin, you can try over-the-counter berberine as an alternative. I'm just starting that.

Beaming good health and hugs your way,

Pat

jennyboog · November 2011

Thanks Pat...I'll look into berberine. Beaming right back at ya

Pure · November 2011

Jenny there is an oncologist at Duke that specializes in young girls..All her patients are under 35 or maybe under 40-I can't remember...That might be a good option for you. Duke is a research hospital which I feel is important. UNC is great well... Maybe those would be options for you? Then their is Dr Mark Graham..He is the fomer UNC coach's doc...He is by many considered "one of the best." I use him as my 2nd opioun... He is brillant no doubt but I swear I wait 3 hours everytime I go see him. But seeing him made me feel good about my TX..

NancyD · November 2011

Jenny, I understand you about the lack of physical examination. That's one thing that's bothered me about my onc. I actually think he's embarrassed to do a breast exam, especially on reconstructed breasts. He's only done it once since I've had my recon, and only once in the 18 months between my bmx and recon. It's just dawning on me that maybe I should have kept up with my breast surgeon (I stopped going when the visits were moved to once a year). I think he might have a better "eye" for seeing anything that shouldn't be there.

jennyboog · November 2011

Thanks Pure...I'll check into them (wonder if my ins. will pay) I'm the same way Nancy...I've not seen my BS since my BMX follow up.

Kay_G · November 2011

I have not seen my BS since the day after sx in the hospital. She released me and told me to follow up with the PS. (I had immediate reconstruction.) I really liked the BS before this, but now wonder. Wouldn't you think she'd want to follow up with me at least once after surgery? I did speak to her on the phone about the path report.

Jenny, sounds like you have some good options for 2nd opinions, hope it works out with your insurance. Good luck finding the job you want too.

Outfield · November 2011

Kay and Jenny, that sounds odd. I had a specific f/u with my BS after my BMx to discuss the path report (I couldn't handle hearing it, but that's a different story). I didn't have reconstruction so there's no PS involved, but my BS wants to see me periodically for an exam and ultrasound. It's hard to imagine a PS doing that, and I trust the BS's exam more than my Onc's. Not that I have anything negative to say about my Onc, but the BS is very thorough. As long as she's willing to see me I'm willing to go.

Kay_G · November 2011

Well all 3 (BS, PS and onc) are at the same cancer center and have a lot of the same patients. BS set up my first appointment with onc for me. I guess she figured Onc would be in charge of cancer and PS would be in charge of surgery. I had to ask both onc and BS to go over path report with me. And both went over it very peripherally. I don't think they want to scare me. I think they are both great docs, but it seems to me both really only want to talk about good news. They're not exactly in the right profession for that. Unless I'm the only patient they treat that way.

jennyboog · November 2011

Let me clarify...I've not been released by my BS, I went a couple of times right after my BMX for path report, drain removal, etc. I think last time we talked she wanted to see me again in 6 mths, that would have been July. I've never called to schedule anything (no excuse just didn't see the point since seeing my onc) and the BS has never called me to schedule anything either. I guess I need to schedule an appt No recon so, no PS and my dr's are all at different hospitals.

jennyboog · November 2011

I got an appt at Duke on 23rd....hopefully, I'll get reassurance and be able to move on Smile

flopsy · November 2011

Jenny, I will say that any Dr you are now seeing about your BC should examine your chest(breast area), axilla and other node areas each time you see them. My BS, ONC, AND RADS ONC all examine me each time I am there. I also examine myself monthly. Always get that 2nd or 3 rd, etc opinion if you are uncomfortable at all with your care or their advice or lack of it. Just recently had problems with my neck and shoulder on cancer side. Saw my PC for exam and tests. He recommended calling the ONC to see what he thought we should do and was told to come in and he would evaluate me also. Went for appt and got in for MRI of neck and shoulders and CT scan of chest to check for rad damage to nerves. MRI showed lots of arthritis and a ruptured disc at C6-C7 that other test did not show. My pain is to my cancer side and was very concerning for mets but that has been totally ruled out by this MRI. No sign of any mets-----YEAH! Always do all you can to get the proper eval and treatment. My onc is very good at his job and I really love my PC also.

Should I get 2nd opinion?

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