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What's normal to expect from an oncologist?

txwife94
Posts: 3
Joined: Jun 2019

I'm just posting again to see if I can get some opinions on what's normal to expect of an oncologist.

My husband's oncologist and his staff are not very helpful about answering questions. My husband has called a couple times with questions and it always takes a couple of calls and days to get answers, which is always "you'll have to wait and ask the doctor about that." These are questions like whether or not it's safe for him to take B vitamins to try to bring up his WBCs and whether they will give him Neulasta or Neupogen whenever he can get his next round of chemo.

They have changed their minds several times even about his diagnosis. At first they said he had stage IV rectal cancer, then they changed it to stage IIIC colon cancer because it started in his sigmoid colon and spread to his rectum. It all just makes me feel less than confident about their treatment protocol. Since they said his cancer is aggressive, it makes me feel like they're just messing around and treating him like a number.

He's not a super needy patient but he just feels like they're nearly unreachable when he needs something and that concerns me. I'm wondering if he should consider getting a second opinion from a different oncologist in a different practice. Does the care he's getting seem normal to the rest of you?

Thanks so much,

Holly

Steelkiwi686's picture
Steelkiwi686
Posts: 47
Joined: May 2019

Hi Holly. That must be very scary when doctors and nurses are not returning calls. At my oncologists/cancer center they have 24 hr phone lines for either medical questions or non medical questions. The medical ones they answer within a few hours if not immediately and non medical they call back by the end of the day.  The calls get directed to my doctor’s medical staff so they know my specifics when they answer my questions. It is not ok to wait days and days for responses.  

A second opinion is absolutely in order if you are uncomfortable about the non responses and shifting diagnosis coming from the doctors  

Second opinions are usually recommended for the issues we face and in your case it may be even more critical.  I could not stay with doctors I do not trust. End of story.   Maybe they just are not the most qualified to treat your husband. Maybe they are but have horrible follow up which is really unacceptable in my book.  It’s worth getting the second opinion to help clarify and solidify choices.  

Trubrit's picture
Trubrit
Posts: 4828
Joined: Jan 2013

I agree with the above comment. I would search for another Oncologist and get a second opinion.  At the end of the day, your husband's treatment is a matter of life and death, and you both need to be confident in your medical team.

If you have difficulty getting a second opinion - like myself, who has to travel 300 miles to my nearest Oncologist, then I would go into the next appointment with a little note book filled with questions and concerns that you want answered there and then.  I know that (sadly) Oncologists are busy, but at the end of the day, it is your dollar that is putting food on their plate, amongst other things. Make sure they take the time to answer you to your satisfaction. 

Thinking of you.

Tru

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

I agree with what's been said. You need to be able to trust the person in charge of your life. I changed my onc when I wasn't confident in her anymore and I love my new one. If changing isn't an option for some reason then I'd certainly address my concerns. Good luck.

Jan

SandiaBuddy's picture
SandiaBuddy
Posts: 878
Joined: Apr 2017

I switched oncologists and believe I benefited from it.  It may be an option.

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

Normal care is not what I would be looking for.  If you and hubby don't feel that you are getting what he needs from his current onc, then by all means look for another.

The doctor-patient interaction and confidence is as important as the medical options.

I personally did not have chemo, but I was caregiver to my sister during her cancer fight.  Her onc and his staff were super.  Gave us a 24 hour number to call with any questions or concerns.  

Marie who loves kitties

Nazareth
Posts: 87
Joined: Nov 2017

[[My husband's oncologist and his staff are not very helpful about answering questions.]]

I would seriously concider gettign new oncologist then- Going htrough cancer is a terrible battle, and you NEED a competent commander to get you through it- not just one who takes care of the battle but keeps you in the dark and won't discuss htigns with you-

For instance, peopel can and do develope lifelong neuropathy i nthe feet and hands from chemo- if your doc isn't willing to listen to you- and you begin getting it- He will likely ignore your concerns and keep you on it without adjusting dose, and you wil lend up with peripheral neuropatyh unecessarily

You need a docto you can say to "My feet are beginning to tingle" and have that doctor take it seriously, and discuss with you changing doeses, or even meds if necessary, or give your body a little break, then resume safely if possible-

With cancer- we are in a figh for our lives, and deserve the best help available- when we have a flu or something, it's different, any old Doc will do- usually- but with cancer- this is serious busienss-

My onc's staff was a little bad abotu gettign back to me too- but they would, one nurse was really nice- and patient with all my questions- so i stuck with my onc- and even she, the onc, came around after awhile- and was more helpful- I had heard really good thigns abotu her, but her bedside manners left a little to be desired- at first- but she knew what she was doing, and did adjust doses when needed- and kept a close eye on my symptoms towards the end-

I dunno- Maybe say "Doc, I know you';re busy, but I'm busy too- busy fightign for my life- and I'm scared and nervous- and don't know what's happening-" Maybe that will help breal the ice so to speak= if not, I'd fidn another doc- I almsot did myself, but thigns did turn around (although the front desk is still very bad abotu returning calls- BUT they wil lcall me right away IF there is soemthign wrong with test results that is concerning- so that is the improtant thing)

Capox Dude's picture
Capox Dude
Posts: 26
Joined: May 2019

When I recently got jumped by my Xeloda treatment (zero to grade 3-4 diahrrea in four days at the start of my 'off' week) I mentioned in an email to my oncologist on day two that the imodiaum was not working well.  She answered me within 15 minutes, notifying me that she had called in prescription meds to my local pharmacy, and to come in the next day for an evaluation and IV fluids.  I'm glad that she did. But I was even happier that she cared about my health, and that she said "I don't want to know about something after it gets bad - I want to stop it from getting bad. Call me day or night"

I love my oncologist.   You deserve that as well.

shu273's picture
shu273
Posts: 33
Joined: Apr 2019

Not just a second opinion but move on! My Husband is receiving Chemo and is on his second month. We interviewed three surgeons and consulted at least five. We learned that you want a specialist for surgery-not a general surgeon and a team of Oncolgists that specialize in  Colon Cancer as well. We chose Barnes/Siteman in St Louis. This is three hours from our home and we would have traveled cross country. They are available 24 hours a day via phone and we have used messaging to communicate at least 20 times. They quickly answer all of our questions and in the beginning we had many. They also explained that treatment plans are based on the pathology and diagnosis, so you want that to be correct. They have listened to all of our concerns and made dose ajustments and even skipped infusions to keep the side effect to a minimum while still achieving the dose goal needed for a suscessful treatment plan. They also are reseptive to any questions that have resulted from our own research of studies. For example, they wanted him to do 6 months but we disdussed the IDEA study with them (3months of Chemo vs. 6 months) and they actually pulled up the power point presentation for that study and went over it in depth with us. Don't settle, this is the most important decision that you will make. You want to know that you have done everything that you can to make sure that you have the best outcome. We know that we have no regrets and sleep well at night knowing we have a team of brilliant caring professional on our side and invested in a cure not just treatment. We are both available if you want to talk about anything. I know what you are going through bcause I am living it too.

Andrea

Annabelle41415's picture
Annabelle41415
Posts: 6183
Joined: Feb 2009

Doesn't sound like a doctor I'd be too much wanting to stake my future on if they can't answer a simple question or even get proper staging.  I'd definitely start looking for a second opinion.  If you don't feel comfortable with their support and concern for your husband's well being, then how can you assume they have the best for his future.  Wishing him luck.

Kim

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