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Disney Girl
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Location: Riverside CA
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Topic: Oncologist Posted: Mar 28 2012 at 12:33pm |
Not sure where I should post haven't posted in a while, but thought this was the best place!!! I had mammogram and appointment with oncologist (nurse practitioner) last month due to bone pain, headaches, dizziness, palpatations and shortness of breath the NP ordered a CT scan, bone scan and echo. I went in for follow up for those tests and found out the NP was no longer there (I established a relationship with her since diagnosis) so I saw the oncologist which I had only seen 2 times prior. She was very rude and dismissive of me and my concerns, the NP had ordered a MRI due to me finding a lump in my other breast which the NP thought was a cist but to ease my mind she was having me do an MRI but while doing breast exam she found new "lumpy" area so she really wanted an MRI, had to send in approval through Medi-Cal.....my oncologist totally dismissed that and stated "you don't need it" I asked her about what the NP found and she said again "you don't need it it's just a cist" she didn't even due the exam yet!!!!! All she kept telling me was to MOVE ON!!! and since I was only diagnosed at stage 1 I "probably" would not have recurrence!!!! I then asked her on my way out if I needed to schedule follow up in 3 months (they told me from beginning I would have follow up every 3 months for 2 years) she said "No I don't need to see you until September". I was so angry and frustrated when I left that appointment I just sat in my car and cried. She just kept telling me I needed to move on. She also told me all the tests I had done were "pointless"....OMG REALLY!!!! Well a few days later her office called me and said they were referring me to a cardiologist, I asked why and she said something was found on my Echo.....REALLY and the doctor told me it was "pointless".
I am so frustrated with that oncologist I do not ever want to see her again, I was going to switch to another oncologist completely different group but opted to switch to another oncologist within the same group. I need to feel comfortable with my oncologist and not be afraid that I will be dismissed if I happen to find something.
I know I need to learn to move on after "cancer" still having a hard time with that word.......but with having Medi-Cal it's hard to find therapist to talk to.....support groups only make me more anxious and fearful of recurrenc with other patients talking about it.
Sorry I went on and on........I'm so frustrated and anxious don't know where to turn.
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DX 3/11 @ 49 TNBC
Stage 1 Tumor size 1.8 cm Lumpectomy 3/11
0 Nodes
8 Chemo 36 rads
BRCA-
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turtle
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Joined: Feb 05 2012
Location: Durham, NC
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Points: 161
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Posted: Mar 28 2012 at 12:50pm |
Disney Girl,
Both your doctors as well as the NP are there to serve you. If you feel you are not getting the service you require, by all means, look elsewhere, but don't look back! The experience you describe is not only beyond frustrating, but totally lacking in compassion. Unfortunately, many of us, even when not treated as overtly rude as you have been, have had less than ideal interactions with our physicians...it's one of the reasons why the number one thing you will hear on this site is "get a second opinion". Not only would I strongly advise this in your case, but a letter to the board where your doctor practices may be in order.
Wishing you the best of luck!
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DX IDC TNBC 1/15/12 @ 46; MRI 2.4cm gr3 BRCA2+ 6174delT; LMX 1/31/12 2.5cm, pT2pNO(i)pMX, lymphovascular invasion present; 2/20/12 TAC X 6; 7/2/12 Rad X 25; 9/27/2012 2nd mastectomy & BSO surgery
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Natalie
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Joined: Nov 11 2011
Location: Bay Shore NY
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Points: 473
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Posted: Mar 28 2012 at 2:06pm |
Disney,
I agree with turtle, compassion seems to be hard to come by. Even when dealing with the C word, who would have figuredthis to be the case when dealing with the C word. So easy for people to say move on, don't look back, yeah easy when someone has not been dealt THIS card. You are your own best advocate. I would surely get a second opinion, even a 3rd and 4th till I got to someone that made me feel very well taken care of.
Stay strong,
Natalie
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TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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sue
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Joined: Aug 13 2010
Location: NJ
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Points: 650
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Posted: Mar 28 2012 at 2:18pm |
Disney Girl,
Not to suggest this applies in your situation, but I had a lump in my "good" breast for 10 years which kept being dismissed as a fibroid, and now it turns out it was never a fibroid and is possibly pre-cancer at the least, and I have to have lumpectomy this April 03. The testing of this lump was pursued due to the very dedicated and caring oncologist and breast surgeon that I have. I was also stage I, no lymph nodes, 0.5 cm invasive, 2.5 cm DCIS, post chemo and rads a year ago the end of April. I believe the criteria with someone who has already had any cancer is to thoroughly check out any new lumps just to be safe. I feel we can never, never, never assume it is "nothing"! I would have been equally upset, frustrated and crying too. No apology necessary for going "on and on". That is what we are here for, to vent and to listen and hopefully help each other out.
Wishing you the best in the future upon obtaining a truly TNBC experienced, patient-oriented oncologist with whom you feel comfortable. They do exist. Keep us informed.
Love and Peace, Sue
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Dx 7/10, age 53. TNBC left breast, stage I, grade 3, IDC 0.5 cm, DCI 2.5 cm, 0/8 lymph nodes neg. BRCA-. T/C x4 finished 2/09/11, rads x34 finished 4/21/11.
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denise07
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Joined: Jun 26 2010
Location: pa
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Points: 997
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Posted: Mar 28 2012 at 2:26pm |
Disney,
I am so sorry you have to deal with this they are so rude. I would find a new onc yours is in the wrong profesion and seems heartless tell you onc to MOVE ON!!!! Hope your next tests turns out good. If your onc had cancer I wonder if she would be able to move on easier said then done. Good luck with everything.
Denise
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DX Idc 10/07,st2,gr3,2/6 lymphnodes
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Disney Girl
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Joined: Dec 29 2011
Location: Riverside CA
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Posted: Mar 28 2012 at 3:42pm |
Thank you Turtle, Natalie, Sue and Denise for responding.....I just don't know where to turn or who to talk to about all my fears, concerns and how to move on after "C"!!!! My family is supportive but I am the only one who is going through this...Thank God none of my other sisters have to experience this and I pray they never do...I have 7 sisters and "most" of them are there for me. I appreciate the support you ladies have given me and I am definitley going to change doctors and if that one doesn't work out I'll move on to another one. I am going to insist on the MRI....I am not sleeping because the minute I wake up in the middle of the night this is all I can think about....and my "bad" breast constantly hurts all the time.
I will keep you posted about the "new" doctor
Barb
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DX 3/11 @ 49 TNBC
Stage 1 Tumor size 1.8 cm Lumpectomy 3/11
0 Nodes
8 Chemo 36 rads
BRCA-
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debB
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Joined: Sep 14 2011
Location: Central Illinoi
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Points: 692
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Posted: Mar 28 2012 at 6:49pm |
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Barb,
I agree with all above... Find a new doctor as soon as possible!! If you are finding lumps, they need to be checked. No one can tell if it is a cyst without checking it out first! In addition to being totally insensitive, it sounds like this oncologist is profoundly uneducated with TNBC; stage 1 doesn't mean lack of recurrence for many of us. Your symptoms are real and need to be treated accordingly! You are absolutely right to be upset. So sorry you had to have this experience! I would say even go through your GP to get the ball rolling on getting your lumps checked out while you shop for a new oncologist. Good luck!
Deb
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Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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sabinecalifornia
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Joined: Aug 31 2011
Location: Corona, CA
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Posted: Mar 28 2012 at 6:50pm |
Hello Disneygirl,
I live in Corona, CA and was diagnosed 07/11 with Stage 2A at age 50. I have also Medi-Cal and I am with Wilshire Oncology in Corona, CA. I am really satisfied with the whole team over there. I just finished Chemo and will start radiation after 4/23.
Best of luck.
Sabine
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Twin Sister
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Joined: Jun 21 2010
Location: Gulf Coast AL
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Posted: Mar 28 2012 at 7:58pm |
My breast hurt all the time and finally a PET scan revealed an internal mets. Now mu back area (right above the waist) (kidney?) aches always and my doctor is dismissive. He's in on Wednesday. I can make an appointment for then or go to ER if it gets bad. Well, I'm no oncologist but kidney and chemo seem to have a relationship here. I told the nurse that was very helpful. Hung up the phone and screamed REALLy like from an episode from Saturday Night Live. REALLY? I am so tired of being sick and tired. Found out I have 16 more weeks of increased Xeloda. So bummed. Michele
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DX4/10IDCSt2Gr3BRCA-Lump4/30/10, port,A/Cx46/14/10;wklyTaxol8/10ended 11/10/10.Rads35xbegin 11/10. LumpRBreastB9
2/2011,MammoOK 8/11 PET-metsIntlMamryChain12/11Xeloda,IMRT8wks;5/12 Mets,Stage4
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Disney Girl
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Location: Riverside CA
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Posted: Mar 28 2012 at 8:23pm |
@ Deb Thanks...@ Sabine I actually am with Wilshire Oncology as well but in Rancho Cucamonga, I have thought about going to the one in Corona I'm switching to another oncologist in Rancho and if that does not work out I will try the one in Corona, who is your oncologist there? @ Michele I'm sorry to hear about yours mets and the way you have been treated.....I hear ya about the Saturday Night Live....that's how I felt!!! I too am soooooooooo tired of being sick and tired. Keep in touch and let me know how you are doing. Barb
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DX 3/11 @ 49 TNBC
Stage 1 Tumor size 1.8 cm Lumpectomy 3/11
0 Nodes
8 Chemo 36 rads
BRCA-
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Disney Girl
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Location: Riverside CA
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Posted: Mar 28 2012 at 8:27pm |
Hi Sabine, Sabine I actually am with Wilshire Oncology as well but in Rancho Cucamonga they were recommended by a friend I work with out of Pomona, I have thought about going to the one in Corona I'm switching to another oncologist in Rancho and if that does not work out I will try the one in Corona, who is your oncologist there? So glad you made it through chemo.....radiation is a breeze compared to that....I just can't seem to bounce back!!!! Keep in touch through your treatment and let me know how you are doing....I actually live in La Sierra so I'm close to Corona Barb
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DX 3/11 @ 49 TNBC
Stage 1 Tumor size 1.8 cm Lumpectomy 3/11
0 Nodes
8 Chemo 36 rads
BRCA-
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sabinecalifornia
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Joined: Aug 31 2011
Location: Corona, CA
Status: Offline
Points: 152
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Posted: Mar 29 2012 at 10:51am |
Good morning Barb,
My doctor @ Wislhire Oncology in Corona is Dr. Karimi. Everybody is great over there. I will have a MRI of my back on April 10th. They found something on the bone scan back in July 2011 when I was diagnosed with TNBC. The last MRI was in December they are not sure if it is Arthritis or Cancer.
I had 10 Taxol and 2 Abraxane because I developed a severe allergic reaction to Taxol. I have a really bad case of Neuropathy in my toes, cannot feel them at all and also swelling of my ankles. I am still working full time.
I hope you can find a better oncologist. If you want to contact me, you can also use my private e-mail, or if you wanna talk.
Wish you the best
Sabine
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Disney Girl
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Posted: Mar 29 2012 at 11:50am |
Morning Sabine,
I will be sending prayers that the MRI shows no cancer!!! I had swelling in the ankles as well....I'm so sorry to hear about the neuropathy. I am going to consider switching to Wilshire there in Corona.....I work in Rancho but living in La Sierra I can just go there and with you liking everyone there gives me another reason to consider them.
Bless your heart that you are working full time through all of it, hang in there just remember you are a strong woman!!!
You can also contact me private email if you need to talk.
Barb
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DX 3/11 @ 49 TNBC
Stage 1 Tumor size 1.8 cm Lumpectomy 3/11
0 Nodes
8 Chemo 36 rads
BRCA-
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sabinecalifornia
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Posted: Mar 29 2012 at 12:25pm |
Hello Bar,
I send you a private message.
Have a great day
Sabine
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TNBC_in_NS
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Joined: Jul 26 2009
Location: NS Canada
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Points: 2028
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Posted: Mar 29 2012 at 5:28pm |
Welcome to our forum ladies! Good to see you here but sorry you are going through all the hassles of TN. I was wondering if any of you were tested for the BRCA 1 & 2 genes? If not, we recommend that you start that process. My test was inconclusive so I really don't know if I am positive or not. But, I am glad to have the process out of the way. It is a simple blood test but being in Canada, it took six months to get the results. We are slow to get results here too! Take care all of you and check out the other threads for questions you might have as you journey on with your "NEW NORMAL." Hugs from Canada Helen in NS
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Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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Disney Girl
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Posted: Mar 29 2012 at 6:32pm |
Hi Helen,
I actually was tested for the BRCA due to my family history and it came back negative.
Thanks,
Barb
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DX 3/11 @ 49 TNBC
Stage 1 Tumor size 1.8 cm Lumpectomy 3/11
0 Nodes
8 Chemo 36 rads
BRCA-
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TNBC_in_NS
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Location: NS Canada
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Posted: Mar 29 2012 at 6:37pm |
BRCA 1 &2 Negative! That is so great Barb! Thanks for sharing .... It is bad enough that we get this let alone passing it on for generations to come! Hugs, Helen in NS
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Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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Disney Girl
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Posted: Mar 29 2012 at 6:44pm |
Thank You Helen......I totally freaked out about thinking it might be positive I just started thinking about my grand daughter. I have 2 son's and the thought of telling them to get tested horrified me. I was so relieved when it came back negative.
Thanks for the hugs....it's nice to be hugged!!!
Hugs back at you
Barb
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DX 3/11 @ 49 TNBC
Stage 1 Tumor size 1.8 cm Lumpectomy 3/11
0 Nodes
8 Chemo 36 rads
BRCA-
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