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Fancy

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Angel
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Reply with quote  #61 
Yeah!  What G said!!!!!   I travel to Zion, IL from Fenton, MI (a small matter of 300+ miles) because when I get there, I have a doctor with a brain, a heart, and vast knowledge. 

Failing that, why don't you take a friend and a tape recorder with you?  Write down you questions, discuss them with your friend beforehand, and THEN meet with the doctor.  I used to take my husband.  He really never said much, but just having him sit there was really good.  Most doctors don't seem to mess with men nearly as much as they to with women.  Lots of chauvinists in the medical offices.


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the Frog's Princess
12/05 ILC 1C NX M0

4/1/08 Stage 4
and looking for NED
Harley

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Reply with quote  #62 
 
g,

Thanks!  I can feel the HUGS!!

Fancy,

Thanks for the kind words of advice!  My dh went with me to my first appt. with this gyn onc, and he was no help.  He liked this guy and didn't go in with me when he examined me, so he didn't see him patting me on the head...  Maybe he wouldn't think that was bad, either...
MEN!!

I just spoke with another women who has the same problems that I am having... she said that she switched from Tamoxifen to Aromasin a year ago, and she is now having to go back in for an endometrial biopsy!  Now I am getting worried that these things are just going to keep growing back, no matter which hormonal treatment I take!! 

Thanks for listening...

Hope everyone has a wonderful weekend!

Hugs,
Harley
MargaretB

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Reply with quote  #63 

Harley, too bad you aren't close to me - you could go to my gyn.  I've been going to him for years and I went to his dad before that.  He's the one who I have to see when I do my endo biopsy.

Harley

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Reply with quote  #64 
 
 
Margaret,

Where do you live? 

My gyn onc cancelled my appt. for Friday, and I had to re schedule for Monday.  Probably just as well, though, since we are getting Hannah on Friday or Saturday. 

Thanks, Margaret.  

When is your endo. biopsy?   When you get back from Maui, I guess...

Have fun in Maui!!

Harley

Indigoblue

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Reply with quote  #65 
Harley,
 
I am going to my Ob/Gyn tomorrow...she is also a specialist in Menopausal Symptoms; problem...I am not a "good candidate", for any of her remedies.  Triple Negative, High Risk Breast Cancer, and sensitivity to anti-depressants (opposite reactions).  She said she might have some ideas (I can't believe I saw her a year ago...seems like yesterday).  She's in the same "new" group of physicians and hospital, but unfortunately she "doesn't DO breasts".  Odd...but if she suspects anything strange, she will refer me to someone.  I've already found some wonderful physicians (I hope) at this facility.  She, the Ob/GYN, told me if there were indications for hysterectomy, ovarian, or other matters of the female anatomy, she would send me to a Gynecology/Oncologist. 
I never, never feel "right" with any of the doctors. 
 
A friend told me today, his mother has Pancreatic Cancer, but they aren't positive or absolutely certain.  She is attending the same Ob/GYN as I...yikes.  Her family has already set her up at the Cleveland Clinic, and feels she will receive better care for this type of cancer.  Someone else told me  his family send three people into the C.C. for cancer, and they never saw them again.  I can't stand it!!!!  He said, whatever you do, DON'T go to the Cleveland Clinic! 
 
Damned if you do, damned if you don't!  Sorry about the swearword...should I say DANG?
 
DANG!
 
(((hugs and love to you, Harley)))
 
You are in my thoughts and prayers.  Get well soon, and try not to be a ding-dong (DANG) like me...I always leap before I think...is there water in the pool?
 
love,
Indi
Harley

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Reply with quote  #66 
 
 
Hey Indi,

If you are triple negative, why can't you take hrt... you know, estrogen and progesterone, for your menopause symptoms?  I was ER+/PR+, so I can't have estrogen or progesterone.  You SHOULD be able to take something for the hot flashes.  I would ask your OB/GYN.

Hope your dr. appt. goes well.  Please let me know how it goes.

HUGS
Harley

nosurrender

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Reply with quote  #67 
Hey Harley how are you doing???
What is planned next?




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Harley

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Reply with quote  #68 
 
nosurrender,
 
How are you doing? 
 
My gyn onc cancelled the appt., which was supposed to be today.  It is just a follow up appt., but I'll be going on Monday, at 11:00, and he is 'fitting me in', since HE is the one who cancelled ME!
 
No, I don't think there is any plan.  It is just a 'how are you doing?' appt to follow up on the surgery.
 
I have decided that I will ask about switching to an AI, and also I will make it VERY CLEAR to this idiot that if these things grow back, I will have a hysterectomy!  I am NOT messing around any more!! 
 
Thanks for thinking of me.  You are so sweet!!

Thanks for this site!  It really helps to get all this off my chest!! 

 
Harley
Indigoblue

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Queen Blue Sky & Golden Light
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Reply with quote  #69 

Hi Harley!
 
Why did the Ob/Gyn cancel?  Twits.  Twits.  Twits. 
I've been too more Ob/Gyns than all the people I have known my entire life!  It's difficult to find one, get an appointment, and finally, 90% are obsessed with the Preggers and Expectant Parents line the waiting room chairs. 
 
I love this Ob/Gyn...might be the first one I've ever respected.  She is quick, expedient, goes right-to-the-point, and explains the topics requiring important discussion.  Her technique is fascinating, and she doesn't hand me or the other patients the "usual load of trash", wasting her time and ours.
 
She had a Resident assisting her this time; and she was excellent, as was the staff, nurses and WOW!  I wonder if she does surgery?  She is the ONLY Ob/Gyn who gives PAINLESS, not even a pinch!, pelvic exams, pap tests, and rectal exams.  She addressed all of my questions, and was prepared prior to my arrival.  Throughout the examination, she offered her complete attention, looked at ME, into MY EYES when we discussed my health issues. 
 
A FIRST from any Ob/Gyn I've ever visited.  She didn't look at a list, leave the room, answer phone calls, interrupt,  or ask me a bunch of stupid questions.  She did a yeast, urine and some other tests, assured me not to "worry".  She is so excellent at detecting the signs of other "chemo cancers", she has won well-deserved awards.  
 
Because the Ob/Gyn is a master at her spcialization, there is no reason, other than general breast exams, to "do breasts";  why bother, when she has the most highly respected physicians in the world, (next door), who will offer their expertise and immaculent judgement calls, as well.  It took me a bit to "figure out the system".  It's superb (I think, we'll see).

My Ob/Gyn doesn't fool around with areas she in unfamiliar, and I trust her to know she has the clout to direct her patients to those specialists whom she would send herself, her mother, daughter or grandchildren too be treated.  
 
Meanwhile, she does send her patients for Mammograms, Ultrasounds, and then to the "world famous & renowned" Breast Surgeons,  Breast Oncology Surgeons, Breast Oncologists in Chemo and Rads, and includes all health issues.  The physicians at this hospital immediately send reports to the PCP, keeping them in the "loop" at all times! 
 
The "OTHER HOSPITAL and DOCTORS", sent NOTHING to my doctors, other than minimal notes.  She was very upset at the rude and inconsiderate treatment of her, an excellent physician, and her patients.  She is not permitted to voice "names, hospitals, etc", but I know her (20 years), and she was worried about my going to this hospital, attempting to discourage me from going there.  Because she is affiliated with ONE small hospital, her priviledges allow her only to send patients to THAT hospital.  With a family full of BREAST CANCER, I knew one thing for certain..."Never go to a Little Country Hospital for a Big Hospital Life Threatening Surgery or Serious Care.".  Many relatives died from "stupid mistakes made by inexperience small-time, bottom of the barrel physicians".  They would be with us today had they been taken to a "real hospital".  NOT ALL SMALL HOSPITALS ARE INFERIOR, IN FACT, SOME ARE SUPERIOR.  BE CAREFUL, IN ANY CASE!
and any and all physicians requested Patient Case Files. to the patient's case.  (The Resident told me all of this, and she came from a very prestigious Medical School to study with this (woman) Ob/Gyn.  Finally, at last, I now understand why it took almost a year to get an appointment the first time!  She is dynamite!
 
Next week, will include my first interview with the (originally first-choice Surgeon), however, now my new (no longer takes patients), Surgical Oncologist, who also specializes in Thyroid and Parathyroid Diseseases, often brought about by some of the Breast Cancer Therapies. 
 
The Surgeon at the "other" Hospital should have followed-up last early July; they never called, did not return my messages, never sent a reminder card, or even bothered to check with my old/new/current Oncologist!  Absolutely ZERO follow-up or care by him, the nurses, the hospital and even the Oncology Counselor!!! 
 
I can't get over how little they care about patients after they've finished collecting all their money...I was extraordinarily brave, nice, appreciative and followed all of his instructions to the Letter.  He promised all this "future follow-up care and it's been a headache since the night I had my Breast Surgery.  He didn't even talk to me after the operation!  I thought the world of this man, but it was all an act, lies, and I was just another number on a paycheck and a claim report.  We have excellent insurance, and I NEVER bother them with calls, even when my Breast and Armpit were swollen with PAIN and INFECTION from the Hematoma and Seroma.  If the "guy" didn't like me, I wish he would have recommended another surgeon or hospital!  I thought he liked me...who knows?!!!

 
At the new Hospital, including an exceptional Breast and Women's Health Program, I have been treated with absolute professional wisdom, caring, clear understanding and kindness.  I really could kick myself for NOT insisting on going there in the first place.  According to my PCP, she could have gotten me "in" immediately.  She said I should have "yelled" at her staff, and need to be proactive.  I was so frightened, they wouldn't give me an appointment, and the Holidays made everything more difficult.  My DH was being "unemtionally detached", at the time.  He and I are working things out, now, but he only accompanied (drove through the snowstorm) to see two crappy surgeons.  He didn't know how serious my Breast Cancer was, and TRIPLE NEGATIVE with a BASAL subtype tends to be complicated, aggressive, and inherently fatal if it is not treated quickly, by the best BREAST SURGEON ONCOLOGIST available.  The Surgeon I had is still questionable, and his treatment, attitude and overall advice continues to disturb the hell out me.  I didn't know ANYTHING, when I walked into the office, he gave me no books, information or pamplets; saying to "trust him".  My DH trusted him.  I DIDN'T!!!
 
I am at now attending a brilliant Hospital, and feel confident I will be given acceptable advice, treatment and TRUTH!  I don't even care if it's less than perfect, since the damage done has been done, and whatever screw-ups happened, there's no proof, and nothing I can do to change the past treatment which I believe damaged this body, soul, quality of life, and left to research, find support, help and guidance on my own.  That was when I leaned the truth, learned to read my Pathology Report, and find answers...THANK YOU, GINA, THANK YOU, CONSTANTINE!!!
 
At the new Hospital (well-known for it's Cancer Specialties), it was difficult to change (changes are never easy).  Now that I have become a part of their systems, my entire attitude and life has changed for the better. 
 
Recently, when I called to check on the required data & current info needed by the hospital, I was treated like an actual "human being"!  The Receptionist transferred me to the Hospital's Patient Advocate, who was extremely helpful.  There's a long list of "junk to do", when you leave one Hospital and Physicians, and (they don't like... it!)
Ironically, (the Receptionist didn't know) I was transferred to a patient who has been seen, treated, and loves EVERY single physician (even the non Breast Cancer ones), that I am (BTGoG", since none are taking new patients.  I think dear Constantine, an Insurance Health Nurse Advocate, the Excellent Physician/Oncologist, and the new excelent Breast Specialist Oncologist and GINA...might have had a "little hand in this stroke of luck".  Just guessing, but I'm NEVER lucky.  I was born during the worst Snowstorm of the century with a black cloud over my poor little head.
 
Anyway, (sorry about the pity-party), this gorgeous, positive, perculating Patient Advocate gave me an Encyclopedia of advice, names, and where I can find nutritionalists, support, etc.  She was so great!  I only know her first name, but want to write letters to all of the people who have helped to make me feel "human, alive, real" again.  
 
The Patient Advoce informed me of the exemplary qualifications held by the physicians I will be seeing (at least 5 or 6); she listed the amazing work the current Surgery/Onc I'll be seeing, and implied without hesitation,  he is the best in the world, and will find problems or deep cancers where other physicians "miss". 
 
She was a patient of his, and had to have some Breast Nodules (benign) removed.  He checked, double-checked, and discovered she had Thyroid Cancer...missed, in fact, not even checked by her PCP.  He caught it early, performed surgery, and warned her about the possible sides effects: one being mets, the other throat, and voice loss.  I talked to her for over an hour, and she is as right as rain.  A beautiful voice, and I think she said she is 9 years NED.  She feels great, and applied for a job at the hospital because of her grateful and outstanding admiration for this physician, all of the physicians, and this "Cancer Teaching Hospital".  I was afraid, really.  I have pain (a lot of pain).  My hormones feel wierd...hard to describe, since I am now in full menopause. 
I am not afraid now. 
 
Constantine gave me such honorable and expert advice, as well as recommending these physicians and hospital.  G also helped, and I am forever in their debt and gracious, humble, thankful admiration. 
 
Even if there is a poor diagnosis, I am not afraid.  I finally feel, for the VERY FIRST TIME in my LIFE!, that I am in the care of professionally, exceptional, knowledgeable and well-trained exceptional brilliant physicians.  I TRUST them.
 
TRUST!  A new word for Indi & my past experience with doctors.  Even my Family Physicians eyes were "glittering, proud, relieved and HAPPY?!!!!!, a new one for her, as well.
 
She is an excellent physician, and attended this Medical School.
 
I'm trying "not" to blab names...gets me in trouble, hot water, and I get the impression docs don't want their names passed around like a pitcher of Margueritas on the Drunken Internet's Gossip Channeling.  If you would like to know more, please p.m. me anytime!
 
I hope you are taking good care of yourself, and feeling better.  I worry so much about my sisters here, at No Surrender.  I have never loved so many women in my life, as those I've been lucky and charmed (Lucky Charms?)  to know here.  It's an intimate, helpful, supportive and loving little Island!  I would have perished long ago without G's inventive, intellectual, medically knowledgeable advice. 
 
I used to frequent B.C. Org under several different log-on names.  Our computer was burned, another was defective, two others were Trojaned, and another one was hopelessly destroyed from one of the Computer Viruses.  Cross my fingers and keep these fire walls for protection.  Our other computer was rebuilt by my DH and his Comp Genius pals...
 
A-hem...
 
Stay well, you are in my thoughts, prayers and OMG...DH announced today that he is going to purchase a motor cycle to save on gas and environmental issues...
 
I don't "do" motorcycles...everyone I know who's been hurt on one was an excellent driver...the animals, other drivers, and SUV's were ALWAYS at fault.  Well...my brother used to have a Triumph 650...I loved riding on the back of his motorcycle.
He's been talking about getting another motorcycle, as well.
 
It would be great if there were special roads for Bicycles, Motorcycles, Golf-carts and Unicycles!  LOL...I always thought the freeways should have a designated "sideway".
 
Be well, Harley...
 
Love,
Indi



Harley

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Reply with quote  #70 
 
 
Indi
 
I am SO glad that your gyn appt went well!  It is good that you finally like your dr.!! 
 
We don't have a Harley anymore... dh traded it in for a BMW motorcycle, just before my bc dx...  But, I know that he is very careful, and he always assumes that the other cars DO NOT SEE HIM... he knows that they do not look for bikes...  sad but true!
 
Well... my gyn onc appt. today went ok... but, I told the dr. that I have noticed that each one of the surgeries have been more painful... and I don't want ANOTHER D & C!!   Maybe I didn't stress this enough!  But I also asked him to please call my regular onc, so I can get it straightened out for once and for all if I will be continuing the Tamoxifen, or switching to an AI.  I also said that AI's are bad for bones, so he said that he was fine with  me continuing Tamoxifen.  I said... then the polyps will grow back!  He said, 'well, I'll give you another D & C in six months, whether you need it or not!'  I assume he was just kidding, so I said... yea, sign me up!!  But, if these things grow back, I will INSIST on a hysterectomy! 
 
I am very tired today... I have been feeling tired alot lately.  This happened before my bc dx, too.  After I was dx'd with Hashimotos/Hypothyroid...   I was tired MOST of the time.  I wonder if I will ever feel energetic again?
 
Thanks for thinking of me...
 
Hugs,
Harley

P S  Yes, this is a wonderful group of women, who truly care!! 

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