Returned cancer and concerned about oncologist

[Heidi]

My husband was diagnosed 8 years ago with nsclc.  He had never smoked.  The diagnosis was made after he had been seeing his pg for 6 months with a cough and chest pain. The treatment was surgical removal of one lobe, without follow up chemo. He was followed with yearly cat scans for 6 years. After the 6th year his oncologist said he only needed to be checked every 2 years.  After 1.5 months I noticed that he was coughing intermittantly again, so we asked his oncologist about pushing up the cat scan.  He was told that it is rare for this cancer to reappear and it would be fine to wait the full 2 years.  At the end of february his 2 year cat scan followed by a pet scan showed cancerous lymph nodes in between the 2 lungs as well as a lit up adrenal gland.  He had a biopsy 4 days again confirming the cancer but we are waiting for the pathology report. 

It's all terror but my agony is now compounded by my misgivings about the oncologist.  I don't know what the standard is for follow up scans and blood work.  Also, we both felt that the oncologist acted very strange when he gave us the bad news.  He was evasive, cold, and even seemed slightly hostile when I asked to see the radiology report and the scan on his computer. (Even his np was defensive.)

I am shaken by his response and do not know how to proceed.  He is considered a top notch oncologist and research director at one of Boston's major hospitals. Naturally I want the best care going forward for my husband but also want to feel comfortable with and trust his doctors.  Is there anyone out there who can please recommend an excellent oncologist in Boston and/or does anyone have any advice on how to approach my concerns with the oncologist we have now.

Thank you for reading my post in this forum.

 

[Lisa66]

Hi Heidi,

 I am so sorry to hear of your husbands cancer. I do not know of any oncologist in your area, but there are some really knowledgeable people in this forum who may have some suggestions. I just wanted you to know that every doctor that we have felt with for my father has shown us all the scans and reports. Some have been more caring than others, but none have been cold or unfriendly. I am sorry you are having to deal with that on top of the unfortunate news about your husband.

I hope you find some answers here. You will definitely find support.

Good luck to you and your husband.

Lisa

[Tom Galli]

Heidi,

I am very sorry to learn of your husband's experience.  I'm a fourteen-year survivor of lung cancer having experienced surgery, radiation, chemotherapy, targeted therapy and precision radiation to achieve my state of no evidence of disease.  Yet, I still see my oncologist 2 times per year.  This is my first year where the number of CT scans was reduced to one per year but my oncologist wouldn't hesitate to order a scan if I or more likely my wife announced a concern. 

I can't begin to explain your husband's doctor's reluctance to move up a scheduled scan.  In my profession, civil engineering, I've known individuals who rested on their laurels or retired early while on the job.  I'm sure the medical profession is no different.  Sometimes we reach a pinnacle where we convince ourself we know it all.  We don't and often the consequences of this attitude harm the people we serve.  I'd find another "top notch" oncologist who has not retired in place.

Unfortunately, we do not recommend individual practitioners by name or institution in this forum.   But we do fund research projects conducted by worthy practitioners and scientists who have been vetted by our organization.  You can scan through the list of funded research to perhaps start your search of a new oncologist to treat your husband.  Many of the listed practitioners practice in the Boston area.

I hope this answer helps.

Stay the course.

Tom

[BridgetO]

Hi Heidi and welcome,

Its odd that the oncologist wouldn't move up the can and odder that he was reluctant to let you see the report and the scan. Maybe he's feeling guilty for not moving up the scan? In any event, it sounds like looking for a new doctor might be a good idea, since you're not comfortable with this one.  Can your husband's primary care doctor suggest anybody?  Best wishes to you and your husband in this journey.

Bridget O

 

[Steff]

Heidi,

I am very sorry to hear about your husband's recurrence. My mom is also battling a recurrence of her NSCLC.  In her first go around, she had a lobectomy and follow up radiation and chemo. We had a similar experience with my mom's oncologist when she deemed my mom "no evidence of disease" after her 1 year post treatment scan. But after a long battle of health issues, it was my mom's new pulmonary doc who found the new mass on her trachea - from the very scan that her oncologist deemed her NED. The oncologist was very stand-offish during our first few follow up appointments with her. We didn't know if she was embarrassed or just worried we would take legal action. We ultimately decided to stay with the doc because the alternative would be driving 6 hours roundtrip multiple times per week. That just wasn't realistic for us. We are fine with our decision and my mom is getting good treatment. I don't think we would feel as comfortable tho if my mom didn't have an EXCELLENT pulmonologist. And honestly, if it were realistic, we probably would have choses another oncologist. So I don't blame you for wanting to look elsewhere.

As someone who is coming off a recurrence diagnosis with my mom, I just want to let you know that things got much easier when we decided to let go of the fact that the cancer was missed (or in your case, not given the chance for a sooner scan) and moved on to ready ourselves for battle. We accepted our choice to stay with the same doc and moved forward with treatment. Some family members weren't happy about that, but they weren't the ones who were going to have to travel 6 hours for a 1 hour appointment.

I wish you and your husband the best.

Take care,

Steff