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Topic: Is anyone annoyed with their Oncologist?

Forum: "Middle Age" 40-60(ish) Years Old With Breast Cancer —

Meet others in this age-range who share similar life issues.

Posted on: Jan 29, 2012 01:10PM

southgal wrote:

I had fluid buildup several months ago in the breast that I had cancer in.   They drained it with a needle and it relieved a lot of the pain I was having.   I started having pain again like I did the last time I had the fluid.  I also felt something in the same breast.   My husband felt it also.   I was pretty sure that it was fluid.  I already had an appointment scheduled with my Oncologist this past Friday.  I went and saw her and told her about the pain and that I felt something.   She examined me and said that she didn't feel anything.   I said you don't feel anything.  Then she had me show her and she said oh  it was just scar tissue and that she didn't think I had much fluid.   She scheduled me for another ultrasound after I told her it was painful to live with.  She said she didn't like sticking needles in the cavity because it could cause infection and it might effect the healing of the area. Needless to say I left a message with my Radiation Oncologist to get his opinion.   She asked me if I still had hot flashes I said yes.   She asked if they were the kind where you sweat through your clothes.  I said I have those sometimes but that the regular ones I have don't get that bad.  She said it didn't count because there are women who have hot flashes every hour on the hour and they sweat through their clothes.  She said she could prescribe an anti-depressant but didn't really want to do that.    She is a nice person but I don't think she listens to me.   I get rib pain from time to time.   I called the Radition Oncologist and asked him about it.   He said that it was caused from the radition.    When I told her this she said, oh I'm sure it's just scar tissue from the surgery, don't you think.  I'm afraid that I'm going to tell myself it's scar tissue the next time I feel something in my breast.   I don't want to develp a whatever attitude.   If I get cancer again I want it to be caught early just like this one was.  Am I going crazy or do some of these doctors not act very concerned.  I'm mostly venting.   Everything has gone wrong here lately and I guess when she acted like she didn't care it drove me crazy.

Dx 9/10/2010, DCIS, 1cm, Stage 0, 0/2 nodes, ER+/PR-
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Jan 29, 2012 01:20PM Kaara wrote:

One of the things you can do to assure yourself that you bc is not returning before it would show up on a mammogram is to get a thermography test done.  It will show early signs of tumor blood vessel growth before a mammogram could detect.  It isn't covered by most insurance, but IMO is worth the cost of around $250 if you are worried.  That is what I am planning to do since I opted out of radiation.

Kaara Dx 11/14/2011, IDC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Jan 29, 2012 01:34PM Miles2Go wrote:

Hi Southgal, Venting is good!  Listen to yourself and pretent you're listening to your best friend...and think what you'd tell your best friend.  Will you kindly get a second opinion from another oncologist?  I fired an internist after waiting far too long to do so, because she was "a nice person" ~ she didn't listen to me.  I lived in Mont!gomery, Alabama for 3 years.  If you happen to live in the South/Southeast USA, my experience with living in Alabama is many times! women are not taken seriously by men or by other women...personal prejudice toward the culture of mine, I know.  It's the reason I moved to Colorado and not to Georgia when given a choice.  For the record, I loved the South for a mutitude of reasons :)  Hugs, Colorado Morning Glory

~promises to keep, and miles to go... Dx 9/29/2011, ILC, <1cm, Stage IIA, Grade 1, 1/2 nodes, ER+/PR+, HER2-
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Jan 29, 2012 01:38PM VJSL8 wrote:

I had a lumpectomy with radiation in 1987 and I had a lot of scar tissue and a lot of pain from it for 23 years. Its like a double whammy--scar tissue and then radiation makes it hard and painful.  My recurrence was right in the middle of the old scar tissue--which was seen on my annual mammogram. I wouldn't have been able to feel it for a couple more years, it all just felt like scar tissue. I never felt pain from the cancer either time. If your insurance will cover it, a MRI will show more than a mammogran--if a recurrence is within the scar tissue--which shows up white on a mammogram--same as cancers.

I think one of the problems you're having is what I have found out over the years about specialists,  that each doctor has a narrow spectrum of what they focus on and if you go outside of their focus, they just don't know because their focus is so very specific. Both times I've had BC, I've had a cadre of doctors, including a GP that helped guide me to the right specialist for each problem.

Who drained the fluid before? That's who you mostly likely need to go see. 

The oncologist doesn't seem to have good communication skills--she shouldn't compare your situation with other women--she should treat your level of discomfort.  My hot flashes weren't as bad as soaking thru my clothes but there were uncomfortable enough that I got effexor from my GP because of how I was being affected.  

The first time I talked to 10 oncologists before I found one I liked and I think it is so important to be able to communicate well with your oncologist. I recently switched GP's because of my recurrence. My GP was fine when I only had to see her once a year, but as soon as I had problems, she didn't know enough about current cancer treatments and I got a recommendation for a new GP from my oncologist.

I think it's important to be able to talk to your doctor and have confidence that they are giving you the attention you deserve. While my oncologist is always telling me -I'm fine, he wishes all his patients were doing as well as me, etc.... but I have never felt short changed in his attention when doing an exam or answering my questions even though most of his patients are much sicker than I. Good luck!

VJ Sleight, 1st diagnosis: 1987, stage 2, ER+, 0/18 nodes, lympectomy, radiation and chemo. cancer free for 22 years, 10 months and 27 days. Dx 8/2/2010, IDC, 2cm, Stage II, Grade 3, 0/0 nodes, ER+/PR-, HER2-
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Jan 29, 2012 09:06PM southgal wrote:

Thanks VJS!   I really appreciate your words of encouragement.   I am thinking about finding another Oncologist because I'm tired of her brushing me off.  I thought her reply to my hot flashes was insensitive.  My husband tells me that she is treating others that are sicker than me and some are probably about to die.  I feel like I'm her patient and she should listen to me even if I'm not like the others.  She told me that next time I will be seeing a physican's assistant.  I don't even know if I will go back.  Have a good week.

Dx 9/10/2010, DCIS, 1cm, Stage 0, 0/2 nodes, ER+/PR-
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Jan 29, 2012 09:15PM southgal wrote:

I had a bad experience with the internist I use to go to.   I had pain in my upper abodmen and about 8 years ago it got really bad.  My husband took me to the ER and they said my enzyme levels were elevated but they couldn't see anything else.   So they told me to go back to my doctor.  I thought it was my gallbladder in the past but my internist kept saying that it was my stomach muscle and if I lost weight that would help.   I went to my doctor 2 days after my ER visit.   My husband came with me.   The doctor said oh, it's just your stomach muscle, if you lose weight it will be okay.   My husband and I agreed that he was just putting me off.  I got sick again 2 days later.  I went to a different hospital.   They told me I had pancretitis and they ran test.  I had to stay in the hospital attached to an IV drip.  I had my gallbladder removed 4 days later.  I never went back to that internist again.  What a quack!   Now it looks like I'm having a similar problem with my Oncologist! Do none of this doctor's believe in the oath they took?

Dx 9/10/2010, DCIS, 1cm, Stage 0, 0/2 nodes, ER+/PR-
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Jan 29, 2012 09:31PM coraleliz wrote:

Hi Southgal-I'm having similar problems with my MO. I'm definitely not any kind of priority. I had my Tamoxifen dose reduced to 10mg on my last visit because of SEs. Then told my reoccurrence risk was "low" but not "none". So, it felt like I didn't need to bother with it. I was in a grey area for chemo & chose not to do it, hoping to get 5 years of Tamox in. From what I can tell, 10mg dosing hasn't been well studied.

I often try to justify it all by saying/thinking sicker patients are the reason. My next appt is in 6 months(after not tolerating Tamox during my 1st 3 months). As far as finding another MO, my options are very limited due to where I live & my insurance. I envy those who can get "several" opinions & find Dr Right. Sometimes we have to make things work & not leave.

Dx 2/28/2011, IDC, Right, 1cm, Stage IA, Grade 1, 0/5 nodes, ER+/PR+, HER2- Dx 3/15/2011, IDC, Left, 1cm, Stage IIA, Grade 1, 2/4 nodes, ER+/PR+, HER2- Surgery 4/15/2011 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right
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Feb 28, 2012 07:50AM upthere wrote:

saw mine for the first time and left there so depressed thinking i am terminal. meanwhile my surgeon told me that even though i had 16/16 positive the comb of chemo and extra dose rads would cure me. the onc seemed to give me thee impression my nodes were dooming me! i am in process of getting scans so will see what happens but i definitely do not like her or her attitude.

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Mar 6, 2012 10:34PM tnhelen wrote:

Southgal - Nothing makes me madder than to be paying a doctor and them act like they are too busy or to bored to listen to me.  I am the CUSTOMER.  Don't they get it?  They don't pay me.  Good grief.  I am so sorry for you.

Where are you from?  I am from the Nashville area and also had DCIS with lumpectomy and radiation.  I completed my radiation about three weeks ago.


Dx 10/9/2011, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR-
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Mar 6, 2012 10:51PM Layla2525 wrote:

Southgal,you should see my oncologist he is a doddering old man and he cant remember who is the patient and what the name is,I had to tell him my name 3 times and its right on my chart in his hand.I told him I have osteoporosis and he told me to take calcium. He gave me Arimidex and it will make you sweat thru your clothes,I have woke up with the AC on and my shirt soaked with sweat. I may have to fire him but I hope not. I had to fire my first surg cuz his staff changed my surg date 3 times and called me and made me cry at work cuz they stressed me out. I drove 25 miles to another surgeon and it was worth every gallon of gas.

 I  chose them and my gen phys I told her I had pain and she wrote me a script for pain meds when none of the other dr would write it even her nurse told me we dont do pain meds here you gotta get referred to a pain clinic for that. Oh gag me with a spoon!

bmx w/TE on 2/13/12,exchange to Mentor high profile 600cc gel implants on 08/30/12,07/01/2013,new Natrelle 45 gel,replaced Mentors due to capsule. Dx 12/19/2011, IDC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Mar 6, 2012 11:29PM Hipline wrote:

I struggle with my oncologist. I wish there was an integrative oncologist I could see. I would love someone who is interested in educating me about diet, lifestyle and supplement choices. In the meantime, I'll continue to read all the great information on these boards.

Pleomorphic ILC, Onco DX score 16 Dx 11/16/2010, ILC, Left, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 12/13/2010 Mastectomy: Left; Reconstruction (left): Silicone implant Hormonal Therapy 1/31/2011 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/23/2014 Femara (letrozole) Surgery 12/5/2018 Mastectomy: Right; Reconstruction (right): Silicone implant
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Mar 15, 2012 01:52PM Janet_M wrote:

I'm currently hating my oncologist. She may be brilliant in the lab, but she certainly isn't good at communicating. If I can get through to  her secretary, which is in itself a challenege, it takes another few weeks to get an appointment. I've called three times this week requesting a phone appointment regarding some side effects from tomoxifin, but no reply. Is this normal? Both my surgeon, and my radiologist are available by email. My MO, is not.  In fact - I haven't seen her since November, as my last two of my appointments were with residents. I'm wondering how other patients are received by their oncologist. Do they make themselves available by email? Does it take days for them to call back? Luckily I live close to downtown, and have gone down to see her secretary in person when I can't get through for two days. So frustrating. Just because you're having a meltdown doesn't mean you're not coping. Dx 7/7/2011, IDC, 2cm, Stage II, 2/16 nodes, ER+ Surgery 8/7/2011 Lumpectomy: Left, Right; Lymph node removal: Left, Right, Sentinel Surgery 6/13/2012 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 10/13/2013 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Mar 15, 2012 02:43PM holdontohope wrote:

I am struggling with my feelings about my oncologist as well.  Really considering getting a second opinion.  I have never felt that he really listens to me; brushes off my questions.  He is very intelligent and keeps up with the latest treatments; maybe that should be enough.  I have seen his physician's assistant and I really prefer seeing her.  She is very kind and attentive.  I feel that my questions are heard and responded to appropriately.  I know she checks everything with my oncologist, so I am getting his knowledge with her patient care. 

tnhelen:  I agree!  I am the customer.  He works for me, so he should listen to me!   And by the way, my daughter goes to school in Nashville; love that city!

Dx Stage IV, mets, ER+/PR+, HER2-
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Mar 26, 2012 05:01PM - edited Mar 26, 2012 05:02PM by Janet_M

Holdontohope - 

You said that  your MO is intelligent and keeps up with treatments, and 'that should be enough'. Well, it's not enough! With all the struggles going on, the last thing you need is to struggle with feeling about your doctor. Get a second opnion. And a third. As a wise friend pointed out - these medical people are our consultants. The 'driving the bus' is up to us.

My MO, as I mentionned earlier, is cold, impatient, and unavailable. Is she brilliant? I don't know. I got a second opnion and it was SUCH a relief to have someone that I could talk with, rather than have a doc who simply reads off my chart.

I'm trying to to find another Onc permanently. First I have to tell my current Onc that our relationship isn't satisfacotry. And as I'm a big fat chicken, this won't be fun. I'm still a work in progress, but i'm finally learning to become  squeaky wheel. 

Go for the second opnion!

 Janet Just because you're having a meltdown doesn't mean you're not coping. Dx 7/7/2011, IDC, 2cm, Stage II, 2/16 nodes, ER+ Surgery 8/7/2011 Lumpectomy: Left, Right; Lymph node removal: Left, Right, Sentinel Surgery 6/13/2012 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 10/13/2013 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction

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