Expectations of my gynecologist

summergal

Hi.  I am looking for advice, suggestions, experience regarding what should be my expectations of my gynecologist post-treatment.  Here's a little bit of backstory:  have been going to my gyn since the birth of my child six years ago.  I like her fine; she's pleasant and chatty.  When my mammogram showed suspicious findings (microcalcifications) in 2012, my gyn left a voicemail advising me to get a follow-up mammo and assured me that "everything will be fine, for 80 - 85% of women, this turns out to be nothing."  I then had a "probably benign" finding, and was advised to come back in six months for a follow-up mammo.  I was told by the radiology dept that my gyn's office would schedule the six-month follow-up.  Six months came and I heard nothing.  I was going to blow it off, as it was several hundred $$ in co-pays, but thought better of it and called the gyn's office.  They knew nothing about any follow-up, checked with the dr. and then went ahead and scheduled it for me.  That was when I was told I needed a biopsy.  Again, my gyn, whom I was seeing days before the biopsy for my annual exam, said, "I guarantee you that this will be nothing.  I'm sure it will all be fine, and I will call you as soon as I get the results of your biopsy."  Long story short:  the biopsy revealed cancer in the left breast.  I heard nothing from my gyn.  I was sent by the surgeon for an MRI, followed by an US, which revealed cancer in my right breast.  Still heard nothing from my gyn.  A month later, as I was reeling, trying to begin the process of second-opinions, I called my gyn for her recommendation.  She did not even know that I had cancer in both breasts.  Despite the fact that I had every test result sent to her.  Now, I know that I'm not the most important patient in her practice; I know that.  But I have been told by my oncologist that my gyn will be the point-person from now on for med management, etc.  I just don't feel that trusting of her because I feel as though she did no follow-up with me throughout the whole time of my diagnosis and treatment.  I'm afraid that if I go back to her it will be very obvious that I'm distrustful, and a little angry, and it will impair our ability to work together.  Am I expecting too much from this doctor?  I will need to work with a gyn on permanent contraception, and I am considering switching drs.  Your thoughts? Thank you.

edwards750

I would change doctors. Its one thing to "overlook" something or to be wrong but quite another not to be on top of what she "missed." That is inexcusable. What she should have done other than being so cavalier about the situation, is to follow up with you asap when the BC was discovered. My OB-GYN is very proactive. Of course there are other patients but so what; that doesn't mean you get shortchanged. There are a zillion doctors out there; I would check with friends or family or even your ONC for recommendations. Since this doctor is kind of your go to doctor you have to have implicit trust and confidence in her and given what you have said - I wouldn't. My OB-GYN called me when I was DX and asked if there was anything he could do. Ditto when I see him for my annual appointment. That is just basic SOP. BC is nothing to be blasé about; given what she has already done/not done how can you possibly trust her to be the lead in your care outside your Oncologist. This is a trying time for you and you need all the support you can get - at the very least from your doctors. Good luck. Keep the faith and keep us posted. You will get through this...we all have. Diane

Halfabanana

Hi Summergal,

I had a somewhat similar experience. My gyn sent me for a routine mammogram, I was called back for another look, then set up for biopsies. I called his office to ask about the BIRADS rating, and saying that I was scheduling biopsies, and he called me back leaving a message that there was no numerical rating on the report. I then arranged to pick up a copy of the report from the imaging center and saw the BIRADS 4 at the bottom of the report. In his message to me he also told me to go ahead with the biopsies (which I never intimated that I was considering not doing) and said that "even if they find something, they will just remove it and everything will be fine".  When the results of the biopsies came in, he never called me, even though he was the referring doctor, but left it to my primary physician (who got a copy of the results at my request) to call me with the news. I switched to a new gyn for my next annual visit....one who came highly recommended by my BS's office. It truly is difficult to continue to trust a doctor who has let you down when you needed them the most! 

summergal

Thank you so much, Diane.  Your words give that small voice inside of me strength.  So much of being diagnosed with BC is being told what to do, where to go, etc.  It feels very disempowering.  But I'm trying to take back my power, and you said it perfectly.

AmyQ

As I was reading your post my thoughts were, you need a new OB-GYN - first of all she cannot guarantee you do not have cancer.  That was a dumb thing to say.  Secondly while we need to be our own best advocate, she failed you numerous times.  I would not trust her with a hang-nail at this point.  I think it's quite obvious she is incapable of managing your care properly.  Find someone you have complete confidence in and keep us posted. 

Amy

LovieLovie

Summergal - WOW!  There was no 'care' from that caregiver.  My question: is your gyn your pcp (primary care giver)?  The reason I ask is that my team through cancer treatment was my MO, RO & BS. Once in a while I would need to check in with my pcp but I have had very little contact through treatment.   I would still fire your gyn.  Not to make excuses for her but sometimes the dr. is only as good as their staff also.  There may be some mismanagement going on there.  Not to mention that you want your dr. to be honest and frank with you.  Time to run away as fast as you can. 

tangandchris

I'm so sorry you had this happen. I had a bad experience with my PS, so I totally understand how you feel. Once you feel like a doctor has let you down, I don't know if you can ever "go back". I would find a new doctor, especially if your gyno is supposed to be your point of contact. Good luck! ((hugs))

Bounce

Dear Summergal

Listen up.  You ARE the most important patient in her practice.  Every patient is the most important patient.

There is no reason you should get less good care just because other people also need good care.

No-one is more deserving than you.

If you trust her gyne-related abilities and want to give her a second chance - its OK to let her know what your expectations will be in the future.

You also know to follow up and get test results yourself so nothing goes unnoticed.

However - if you are not comfortable with her and can get a recommendation for someone with a better bed side manner its worth changing.

I changed house doctors after my BC diagnosis.  I really thought that after 6 years of being my doc he could at least once during the entire procedure (lumpectomy and rads)  have called to see how I was doing or offer some encouragement.  Pre lumpectomy all he could do was tell me my never ending cough was due to nerves about having cancer!  Funny, after my lumpectomy I went to an ENT who diagnosed a sinus infection and 10 days of antibiotics later I finally stopped coughing.

Ditching a doctor is actually a very satisfying feeling.

Make that small voice inside of you loud and strong.  You are such a sweet person, you don't want to take time away from anyone else or bother anyone or be even a little pushy - but you are very important and deserve the best care.

Hugs

farmerlucy

I'd had the same gyn for 20+ years. I felt like he wasn't really keeping up with things, so I switched right after my diagnosis. My MO recommended her obgyn who is in the same hospital network as all the rest of my docs. I felt like that was the way to go. The new gyno has been amazing.  Go for it!

summergal

Thanks, everyone, for your wonderful advice.  So much of this journey has been "DIY," you know?  And this is just one more piece that feels like par for the course.  When you get a cancer diagnosis, you feel it is the worst, biggest thing in the world...and it is!  But all of my docs have been very casual and cavalier about the whole thing.  It's interesting you asked about whether my gyn is my pcp, Lovie.  I am so rarely ill that I only see my pcp about every other year for a sinus infection or something, but even he failed to reach out to me when he learned of the dx.  I've been going to him for 15 years.  When I recently had to go to see him for potential pneumonia, he did not once ask me anything about my cancer or treatment.  Time to clean house!!! 

NatsFan

Good for you - time to clean house indeed.  One thing that b/c has done for me is to make me realize that I need the best possible health care providers on my medical team, and that I am in charge of that team.  If someone doesn't measure up, then I remove them from the team and find someone who does measure up.  I too found myself "cleaning house".  I changed MO, PCP, and my gyn, and am SO happy I did.  I now have a great medical team - they're involved and responsive, and they aren't afraid or defensive when I ask questions or want to know more.  They're the kinds of doctors who welcome patient involvement in their own care.  

I'm very particular about who I put on my medical team now.  Last year I needed some minor surgery (non b/c related).  I went to the general surgeon recommended by the PA in my PCP's office, and was not happy at all.  This surgeon was your stereotypical surgeon arrogant jerk.  He never really explained his recommendations or planned treatment - he just told me that someone in his office would call to schedule the surgery.  When I asked a couple of questions, he got visibly irritated and basically said don't worry your pretty little head about all that medical stuff.  I called my PCP's office back to request another doctor, and spoke to the PA.  I told him exactly why I wasn't happy with the surgeon and requested another name.  The PA thanked very much for letting him know about my experience so they'd know for the future - he said no one ever gives them feedback about the doctors they refer, and he really appreciated that I'd called.  He gave me the name of another surgeon, and I'm very pleased with that surgeon.  

We have to be our own best advocates.  

summergal

Thanks to all of you and your encouragement, I am seeking a new gynecologist for an initial consultation.  I have been too long in the dark and am finally taking steps to make sure I get solid, compassionate, informed gynecological management.  As I approach the consultation I'm looking for suggestions on what I should be sure to ask, and not leave unturned.  For instance, on another board, I saw that vaginal ultrasounds are recommended for those of us on Tamoxifen, to monitor the uterine lining.  So I'll be sure to request that that will be part of my ongoing gyn care with the new doc.  In addition, I see women writing that they have routine bloodwork done b/c of Tamoxifen (vitamin D levels, etc.).  Bloodwork that can reveal tumor markers.  Is that also something I should ask/expect of my new gyn?  Any other suggestions?  Thank you from very rainy (and potentially snow later today) PA!!!

leaf

When I took tamoxifen (for 5 years), I did have 2  pelvic ultrasounds, but that's because I had 'dysfunctional' vaginal bleeding.  I had uterine polyps every 1-2 years.  All were removed and were benign.  My gyn also did my vitamin D level.  

I felt comfortable about this, though some people recommend more frequent pelvic ultrasounds.  I found pelvic ultrasounds traumatic at the place I got them, because I couldn't hold my urine for the required amount of time.  They locked the door to the bathroom, and took another patient before my scheduled exam.   I don't want to go back to that place at least with that receptionist who held the key and had absolutely no sympathy.  If I had it now, I'm sure I'd have to use an incontinent pad or they'd have a very wet floor.

  There was a recent study that found

The incidence of endometrial cancer was 0.388% (153/39,411) in patients with tamoxifen treatment, while was 0.198% (69/34,869) in patients without tamoxifen treatment. http://www.ncbi.nlm.nih.gov/pubmed/24563669

The risk factors were age >35 and tamoxifen use >3 years. So, while the incidence of endometrial cancer with tamoxifen was about twice as high as without tamoxifen, it was still <0.4% in this group.  Since this group included women 1997-2004, I don't know how many of these women took tamoxifen >5 years, and whether you would be a candidate to take tamoxifen for 10 years.

BTW, I don't think gynecologists are 'expert' on breast cancer.  They certainly can do breast exams and order screening mammograms, but once I had a higher risk condition, I was handed over to a breast surgeon or medical oncologist.

I also read a post by some women who got notices about getting their routine mammogram after having had bilateral mastectomies (they replied 'I got no mamms to gram'), or doctors asking how breastfeeding was going after they had bilateral mastectomies.

I also applaud your decision to get another gyn.  You will be going to a gyn for some time, and if you are going to have a relationship with a doctor for some time, their bedside manner is important.  You need to have someone you can trust.  Good for you!