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All TopicsForum: Emotional Crises: Anxiety, Depression & Other Emotional Effects → Topic: STEAM ROOM FOR ANGER

Topic: STEAM ROOM FOR ANGER

Forum: Emotional Crises: Anxiety, Depression & Other Emotional Effects —

Meet and support others who are affected by these issues around breast cancer fears, diagnosis and treatment.

Posted on: Jul 16, 2015 12:21PM - edited Aug 2, 2017 01:46AM by sas-schatzi

sas-schatzi wrote:

This thread is meant to be for RANTS and RANTING. Then Rant again. We need a place to simply get rid of the anger. Write it here. Unleash it all. Get it out. This isn't meant for the Stupid comments(great thread). This is for the gut wrenching, tell them off anger.

IMPORTANT: When done ranting don't necessarily stick around. Toxic. Drop the rant and find a better thread.

Only rules: Please, follow them as the Mods will shut it down in a heartbeat( waving Mods)

1. Be careful to not mention docs, nurses, hospitals by name. Defamation and all that tedious legal stuff

2. If it's caused by someone on BCO, just don't mention their name. I think the exception will be if someone is stalking you, blow their anonymity wide open. A stalker doesn't deserve politeness.

3. If you think the rant is about you, let it go, they're no names. Don't take it personal. This is the steam room.

4. If they're is a fight, don't expect the Mods to moderate, it was your choice to come here.

5. After writing a rant, do nothing more, re-read at a future time. Decide if it's important enough for you to cut and paste the rant to whomever caused you the anger. It's a choice. Sometimes it needs to be done, but remember they're can be fall out.

6. ######## pound those keys, SCREAM(caps), J*&R$WSDF&(swear)

7. Religion and politics discussion should go to those topical threads. IF their is something that impacts cancer, it belongs here.

I will revise topic box as needed-sassy

For puking and the color works pukeewogh

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Dec 11, 2017 01:17PM jaycee49 wrote:

I also did some Googling on doctors who bully their patients. Seems to be a rather common phenomenon.

Janet (dx with MS at 41, slows me down some) Dx 4/25/2014, IDC, 3cm, Stage IIB, Grade 2, 1/18 nodes, ER+/PR+, HER2+ Surgery 6/4/2014 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 8/4/2014 Herceptin (trastuzumab) Chemotherapy 8/4/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/1/2014 Chest wall Hormonal Therapy 2/14/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/25/2016, IDC, Left, Stage IV, metastasized to bone/lungs, Grade 2, 1/18 nodes, ER+/PR+, HER2- (FISH) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Dec 11, 2017 02:32PM DancingElizabeth wrote:

Janet - That sucks about doctors who actually bully their patients. Are they forgetting - that *we* are the customers? Geez...Unbelievable. I would still write both letters...and maybe not send the nice one? Or - write 3 letters? One - to vent. One - nice - but - still getting your feelings out. And - one that you might send. I think after getting your feelings out - more and more on paper - it will get easier. I'm glad you have an appointment with your therapist. They are great at bouncing ideas off of!! Keep us posted!!

Dx 4/13/2016, DCIS/IDC, Right, 6cm+, Stage IIIA, Grade 3, 3/23 nodes, ER+/PR+, HER2- Surgery 5/18/2016 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Surgery 5/31/2016 Lymph node removal: Sentinel, Underarm/Axillary Chemotherapy 7/6/2016 AC + T (Taxol) Radiation Therapy 11/8/2016 Hormonal Therapy 11/9/2016
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Dec 11, 2017 06:58PM Lita57 wrote:

Lula: Excellent points about many drs being the "nerds" and the socially awkward ones who never learned good communication skills. Imagine having Sheldon Cooper from The Big Bang Theory as your MO, ha ha.

In my limited experience, the jocks and cheerleaders tend to go into sales, marketing and other "people" oriented jobs because it just seems a natural fit for them. One of my daughter's high school friends is going into medicine, and I PITY the patients who will eventually see her. My daughter feels the same way. Hopefully this young lady will focus on research, but I doubt it.

They just don't teach "bedside manner" classes in med school. I'm definitely NOT trying to defend these bullying and/or condescending drs, but that's the way it is. Plus, drs only have about 8-10 mins to spend w/each patient, and that's got to be frustrating.

My clinic has these plastic holders with "grievance forms" in them all over the place, so negative experiences with drs is no doubt a common problem out there. Doesn't excuse the behavior, but it helps to know it's not isolated to one provider/medical establishment.

We all have our horror stories. My MBC was delayed being dx'd for months because my bitch PCP refused to do the appropriate tests even tho I insisted. I'm no longer seeing her, thank God.

L


Stage IV De Novo, Occult, Amorphic. New Brain Mets Aug 2017. Now on Gemzar. I've been dragged into an arranged marriage I didn't agree to. Divorce is off the table now that I'm married to Mr. Cancer. Grateful for however many days I have left. Dx 4/14/2016, IDC, Left, Stage IV, metastasized to bone/liver/other, ER+/PR+, HER2- Radiation Therapy 4/26/2016 External: Bone Targeted Therapy 5/15/2016 Chemotherapy 5/22/2016 Xeloda (capecitabine) Radiation Therapy 4/20/2017 External: Bone Dx 8/23/2017, IDC, 5cm, Stage IV, metastasized to brain, Grade 3, ER+/PR+, HER2- Radiation Therapy 9/5/2017 External: Brain Chemotherapy 10/10/2017 Taxol (paclitaxel)
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Dec 11, 2017 07:32PM Lula73 wrote:

Jaycee- you can always ask your GYN to contact the IntraRosa rep and arrange a discussion with their medical liaison on how it works exactly. Most docs hear the estrogen part and automatically say no. It’s a vaginal suppository that works only on certain receptors in the dermis. The tiny amount that they have been able to document crossing into the bloodstream is not even at a level any lab drs are using can even calculate and even at specialty labs it’s minuscule and considered not a clinically significant change. For all these reasons plus a few more is why it doesn’t have the same warnings as say the Estrace, Vagifem, and all the other creams/tablets. It’s only been out 5 months. When I was diagnosed in Jan, my GYN even wanted the mirena removed due to the small localized hormone amount but was just fine with the intrarosa today (they had just had their education session on it a couple weeks ago.) it was originally recommended by the OB /GYN who did my hysterectomy in NOLA. Ive been researching it since he suggested it after a long discussion on ER+ BC and options for vaginal atrophy

-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/14/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/3/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/1/2017 Prophylactic ovary removal Hormonal Therapy 1/3/2018 Femara (letrozole)
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Dec 12, 2017 12:37AM - edited Feb 8, 2018 04:45AM by Meow13

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Dec 12, 2017 03:48AM chronicpain wrote:

There are sadly many doctor bullies, both nerdlike and not nerdlike, often pushed for time. There are also nurse bullies ( or more commonly and more annoying, indifferent nurses), who refuse to call a doc when they are over their heads. Sometimes they bully each other! And then there are excellent , professional, caring people, still here, usually overworked, we just have to find them.

Doctors and nurses in some areas and fields also face ongoing, almost daily abuse by patients who are bullies, (not just assertive patients, but actual bullies, like patients who call them the N word or degrade the docs' intelligence, e.g., say their advice is "stupid", make unreasonable demands, or even assault them., Medical students and residents now have teaching modules in some places entitled "The Hateful Patient" which try and teach the young docs how to retain professionalism while dealing with patients assigned to them who continue to insult them, do not comply with appropriate recommendations, abuse their time with frivolous emails, are perpetually late, are sexist, etc. They often land up trapped having to see such patients, as they are now, due to financial pressures, mostly working on salary, e.g., few docs are left in true private practice anymore where patients could be "fired." And more and more of us patients are stuck having to deal with big health care consolidated bureaucracies, following endless multisource rules, so we also have less options, and firing a whole medical complex can have financial consequences or create geographical care problems.

We have to fight for our loved ones and ourselves to get the best care we possibly can with the limitations in finance, geography, communication,and time that we have, each of us different in how much effort we can put into it. It is exhausting.

After a decade of autoimmune problems, Dx 10/2017 at age 63, IDC, Left, 9mm, Oncotype 13, Stage IA, Grade 1, 0/5 nodes, ER+/PR+, HER2-, 11/22/2017 Lumpectomy, Arimidex. Declined radiation.
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Dec 12, 2017 04:27AM - edited Feb 8, 2018 04:45AM by Meow13

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Dec 12, 2017 09:25AM Lula73 wrote:

meow-I feel your pain on grown children not picking up. Have you tried texting him? This generation of young adults seems to prefer communicating thru text even when they’re not wanting to talk. My DIL won’t ever talk on the phone. It’s text or nothing. Its frustrating, I know.


-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/14/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/3/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/1/2017 Prophylactic ovary removal Hormonal Therapy 1/3/2018 Femara (letrozole)
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Dec 12, 2017 03:29PM - edited Feb 8, 2018 04:43AM by Meow13

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Dec 12, 2017 06:44PM runor wrote:

This talk of rotten docs brings to mind the time I was pregnant, had a new doctor, asked him some question or other and he snapped at me that he was 'not going to sit around rubbing my vulva.' I was so shocked, so horrified, I leaft with my outh hanging open. By the time I got home I was mad. When I got up the next day I was mad. And when mad carries over beyond one sleep, then it is time for action. Often my mads flare and then fizzle. But when they don't fizzle, time to meet it head on.

I went back to his office the next day and laid it on the line. I said, "your comment yesterday was offensive and inflammatory. If you have a problem being my doctor you better say so right now so we can make other arrangements. But if you care to continue being my doctor words like that had better never come out of your mouth again." I left the ball in his court. I stated my case, I left the door open for a graceful exit if that was what he wanted. He apologized. He said I was right, he was pressed for time and snapped at me when he had no business doing so. It didn't make me like him any better, but I did feel better about myself for stopping and saying, oh no you don't, buster, I don't care who you are, you put your pants on the same way I do, one leg at a time, so you do NOT get to talk to me like you have the authority to do so!

Here in Canada we don't often sue doctors, but I sure would have liked to sue that sonofabitch after he botched my daughter's birth (left me home in labour for 3 days telling me I had a bladder infection and put me on antibiotics when in fact my water had broke and by the time my kid was born, battered and bruised 3 days later, things had become an emergency !) I know doctors are just people and prone to bad days, but along with book learning comes the absolute requirement of people skills and if you don't have both, go be something else. I think we need to speak up on our own behalf, I think it's absolutely reasonable to ask some professional, hey, what's your deal, did someone shit in your Shreddies this morning because you're sure dumping hostility and attitude on me! It may not correct the doctor, but I hate myself when I stand there and take it. I don't anymore.

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 12, 2017 08:12PM HoneyBadger47 wrote:

Lita, so good to see you posting. I was in agreement when reading and saw the comment about your pcp. I started laughing and scrolled up to see who wrote it. Should have known it was you!

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Dec 12, 2017 08:25PM Meow13 wrote:

runor, what a horrible experience.

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Dec 12, 2017 11:59PM DancingElizabeth wrote:

Lita - it is so good to see you on hear posting...I am rallying for you and always glad to see you on here.

Hugs to everyone on here...

I wish I had more time to post...but in homework hell with my DD. (The poor thing just got over the flu and is slammed with homework!!! Ugh!!!)

Dx 4/13/2016, DCIS/IDC, Right, 6cm+, Stage IIIA, Grade 3, 3/23 nodes, ER+/PR+, HER2- Surgery 5/18/2016 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Surgery 5/31/2016 Lymph node removal: Sentinel, Underarm/Axillary Chemotherapy 7/6/2016 AC + T (Taxol) Radiation Therapy 11/8/2016 Hormonal Therapy 11/9/2016
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Dec 13, 2017 01:22AM - edited Dec 13, 2017 01:31AM by Bluebird-DE

good discussion I missed reading most of it on times, been contemplating my next move.

I am switching to another oncologist hopefully at the same center.

Sorry, typed in iPad and it changes my typed words atnwill like that. Tried to fix all the mistakes.

Janet, whatever we write we have to be prepared for it to go unread and end for it to be tossed on the floor and stomped on in front of us. I am going to write to this onc w my concerns and reasons for transferring. I will limit it to three each so as not to take too much of his time, ,lol. The story is on the liver mets tread. How are people with liver mets doing?.... It's pretty grim, this new onc's opinion. . But I do know moss will not grow under my feet ever again. Not where my life is concerned

I had to write a doctor once, my primary oncologist I chose. His staff was the problem. I didn't name anyone but I did give dates and times in case he wanted to see who did what. I told him in the letter that I couldn't sleep and though we had moved through the trials I had I felt concerned there were other patients who could not find the strength to tell him or contact him on the side. I gave every problem, mostly that I had called the phone nurse to request the he, my onc, approve a PET CT scan. I was in trouble and knew it. I was told not once but twice that he declined my request. Two different nurses. I cried. I begged aand told the nurse there were lumps in my neck, i couldn't breathe right. But she said he was quite adamant on his decision. My hubby called his private cell the next Friday morning without my permission and diplomatically told him I was being ignored by "all these doctors" and needed a scan. My onc had me in a scan first thing that Monday. I had cancer lymph nodes everywhere. My right upper lung lobe was collapsed from airways being closed off. Dr. G went to the hospital board and demanded a nurse navigator to be certain this did not happen again. He got her same day and I was the first patient that Tuesday. Quick work. Still the issues kept me awake at night for weeks and I wrote to him, gently but plainly on what happened. When I made mistakes too, like not using the private number sooner. My theory on the mystery of him not getting his messages from me is that his actual nurse was giving the non-order, no scan. But no one was pointed out.

I just loved that oncologist. When he decided to pursue complementary cancer training in Alaska I cried. He wasn't perfect but he is a gem. He will be a better oncologist for this, I know. He told me once that he is learning to listen to his patients and not the scans or tests first. Never did he discourage me from my complementary choices. He listened, he explained maybe too much for time allowance, he kept me on the schedule with added time because he knew we would get off course I think. Sometimes Hubby and the onc and i would talk for half an hour about complementary medicines and choices in other countries. Not perfect but sorely missed now. No wonder I am floundering.

We have a great group here. I so appreciate being heard and all the stories and the anguish shared. Could not imagine going through this without all of you.

Diane

"Every mistake I have made has proven to be invaluable information for someone. Namely, me." Me. Diane Dx 7/15/2011, IDC, Right, 2cm, Stage IV, metastasized to liver/lungs/other, Grade 3, 3/11 nodes, mets, ER+/PR+, HER2- Chemotherapy 4/5/2017 Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Arimidex (anastrozole) Hormonal Therapy Femara (letrozole) Radiation Therapy External: Lymph nodes Surgery Lumpectomy: Right; Lymph node removal: Left
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Dec 13, 2017 12:11PM jaycee49 wrote:

Well, I took a stab at ONE letter. I doubt I could write three or even two. This is either to send him, where it may be intercepted by someone else and he never sees it, or read to him by me at our next appointment, where he will say, "I never said that or did that." That's been his reaction in the past. I'm going to that old place where we always go. This was my fault, right? I'm neurotic, crazy. I went to my PCP Monday. She and her nurse were very sympathetic and understanding. Since she is a first year resident, I also have to see the attending. A male. He said I should talk to my MO and explain how I feel. That he would understand because he is a very caring doctor. My MO is a professor to the attendings.

Here is my first attempt. I just tried to be totally honest. The last sentence in the first paragraph will have to be deleted, I know.

Dear Dr xxx,

I was stunned when I walked out of our last visit. I can't figure out what I did to make you so angry. For the last year, I have barely taken more than five minutes of your time at any appointment. That is the only time you seem happy when we part company, when I am in and out quickly with no questions and no discussion. I'm not sure I can survive another meeting with you under these conditions. I am petrified to say anything and find it impossible to respond to your anger. I am an intelligent and articulate person but your anger turns me into a flustered mess. I'm seeing my therapist this week to seek her guidance. I've seen her only rarely recently but this issue is weighing heavily on my mind. Maybe I am feeling overly anxious and being overly sensitive and I want to work on that. I assume you would totally blame our dysfunctional relationship on that. I respectfully disagree. Some of it has to be coming from you.

You said you would "set me up with another doctor." I hope that would mean a doctor within your practice because I love your support staff and would hate to leave them.

Janet (dx with MS at 41, slows me down some) Dx 4/25/2014, IDC, 3cm, Stage IIB, Grade 2, 1/18 nodes, ER+/PR+, HER2+ Surgery 6/4/2014 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 8/4/2014 Herceptin (trastuzumab) Chemotherapy 8/4/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/1/2014 Chest wall Hormonal Therapy 2/14/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/25/2016, IDC, Left, Stage IV, metastasized to bone/lungs, Grade 2, 1/18 nodes, ER+/PR+, HER2- (FISH) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Dec 13, 2017 01:16PM jaycee49 wrote:

KB870, thank you for your input. I like your edit to that sentence. I do have several very good doctors, even here, a place I like to call "the black hole of medicine." Unfortunately, several of my good doctors have left the area or retired. I do hear even worse stories from people in all kinds of places, even big cities. At least I don't have any long drives. I never have to leave more than thirty minutes before an appointment because nothing is more than that far away from home. I'm seeing my urologist's NP this afternoon and I'm going to try and not mention the MO at all.

Janet (dx with MS at 41, slows me down some) Dx 4/25/2014, IDC, 3cm, Stage IIB, Grade 2, 1/18 nodes, ER+/PR+, HER2+ Surgery 6/4/2014 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 8/4/2014 Herceptin (trastuzumab) Chemotherapy 8/4/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/1/2014 Chest wall Hormonal Therapy 2/14/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/25/2016, IDC, Left, Stage IV, metastasized to bone/lungs, Grade 2, 1/18 nodes, ER+/PR+, HER2- (FISH) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Dec 13, 2017 03:48PM runor wrote:

I second KB870's opinion. Good letter.

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 13, 2017 05:52PM Bluebird-DE wrote:

Anytime a doctor offers to set us up with a different doctor wouldn't it be great to have that instant gumption to say, "Yes, please do. I will make my choice and be back to you within three days." And walk out. Oh how I wish I had it in me. And without being angry, just yes, please do.

"Every mistake I have made has proven to be invaluable information for someone. Namely, me." Me. Diane Dx 7/15/2011, IDC, Right, 2cm, Stage IV, metastasized to liver/lungs/other, Grade 3, 3/11 nodes, mets, ER+/PR+, HER2- Chemotherapy 4/5/2017 Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Arimidex (anastrozole) Hormonal Therapy Femara (letrozole) Radiation Therapy External: Lymph nodes Surgery Lumpectomy: Right; Lymph node removal: Left
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Dec 13, 2017 06:12PM Bluebird-DE wrote:

Janet - could it be the letter can be that simple.

"You once offered to set me up with a different doctor. Yes, please do. I have chosen ______ and expect this to be arranged for my next appointment to be with them within ___ weeks. or by January ____."

I'm still working on my letter. The words appalling and deplorable came out of me, hahaha

"Every mistake I have made has proven to be invaluable information for someone. Namely, me." Me. Diane Dx 7/15/2011, IDC, Right, 2cm, Stage IV, metastasized to liver/lungs/other, Grade 3, 3/11 nodes, mets, ER+/PR+, HER2- Chemotherapy 4/5/2017 Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Arimidex (anastrozole) Hormonal Therapy Femara (letrozole) Radiation Therapy External: Lymph nodes Surgery Lumpectomy: Right; Lymph node removal: Left
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Dec 13, 2017 07:13PM SheliaMarie wrote:

we lost a patient yesterday. She was 28. Found out in October that she has cancer, after losing a baby. Came in for chemo on 10/30, eggs frozen so she can have future babies, and it only went downhill. This is the third unexpected loss on our unit in two weeks. Going to work is HARD! Never mind that my shoulder and armpit pain is now all the way down my arm. What gives??

Dx 7/7/2008, IDC, Left, 2cm, Stage IIB, ER+/PR-, HER2- Chemotherapy 8/6/2008 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Dx 5/24/2017, IDC, Left, Stage IV, metastasized to bone/other, 1/1 nodes, ER+/PR-, HER2- Chemotherapy 4/9/2018 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 6/10/2018 Halaven (eribulin) Hormonal Therapy Aromasin (exemestane) Surgery Prophylactic ovary removal Hormonal Therapy Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Breast, Lymph nodes Surgery Lumpectomy: Left
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Dec 13, 2017 07:46PM JKL2017 wrote:

Swess, that is heartbreaking. It must be so hard to do what you do. I hope you know what a difference you make in the lives you touch. Have you been evaluated for lymphedema? Breast cancer - the gift that keeps on giving! Sending you hugs.

Dx 2/2/2017, ILC, Right, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 3/7/2017 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 3/20/2017 Multi-catheter: Breast Hormonal Therapy 5/24/2017 Arimidex (anastrozole), Aromasin (exemestane)
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Dec 13, 2017 07:48PM Bluebird-DE wrote:

Oh Swess, that is so hard. To be in a cancer center or unit has to be one of the most heart-wrenching positions anyway and to lose a young woman who was trying to become a mother. The staff at the last center I went to had a quick turnover so they would not burn out on grief alone.

The pain in your arm and shoulder. I had that. For me it proved to be one of two things: 1. lymph node masses in the supraclavical had grown large and together, pushing on nerves. 2. I also had a collapsed lung lobe on same side which presented as back pain on opposite side. Radiation in broad basin for supraclavical stopped the pain within three days, so that was probably it.

I suggest a scan of the lungs to be more secure. There is a scan that can find lung cancer even before it presents, that is available through Goshen CC I know, don't know where else.

"Every mistake I have made has proven to be invaluable information for someone. Namely, me." Me. Diane Dx 7/15/2011, IDC, Right, 2cm, Stage IV, metastasized to liver/lungs/other, Grade 3, 3/11 nodes, mets, ER+/PR+, HER2- Chemotherapy 4/5/2017 Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Arimidex (anastrozole) Hormonal Therapy Femara (letrozole) Radiation Therapy External: Lymph nodes Surgery Lumpectomy: Right; Lymph node removal: Left
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Dec 13, 2017 07:57PM Bluebird-DE wrote:

Janet, I told my DNP about the visit with the new onc. I asked her opinion on the flack I could get from requesting a transfer to a new doctor within the same center. She said it is a matter of chemistry, if we didn't click then I couldn't work well enough with him to manage my health and life-saving efforts. She usually takes about 30 min w us, she is on the ball, a mover and shaker. We had our issues long ago but like I said, no one gets a perfect one. But we do deserve a lot better than you are getting from yours. And me from mine.

My letter hits the talking points but I am not good at editing wordiness. Hubby is helping. I need this done for morning to deliver to his office and to get in to whomever is in charge of getting me to a different doctor, probably him since he is the director of oncology there. But he should be able to put his ego aside for my request. So a short short w the exact wishes for that person or if it is him The longer point driven letter for him which I will have a coy of for my new choice if there is any flack, I will use it in some form so get the heat off of me. oh bother, said Winnie the Pooh.

"Every mistake I have made has proven to be invaluable information for someone. Namely, me." Me. Diane Dx 7/15/2011, IDC, Right, 2cm, Stage IV, metastasized to liver/lungs/other, Grade 3, 3/11 nodes, mets, ER+/PR+, HER2- Chemotherapy 4/5/2017 Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Arimidex (anastrozole) Hormonal Therapy Femara (letrozole) Radiation Therapy External: Lymph nodes Surgery Lumpectomy: Right; Lymph node removal: Left
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Dec 13, 2017 09:07PM - edited Dec 13, 2017 09:15PM by Bluebird-DE

My polite letter ended up being this:

Since you are the director of oncology, I assume you would handle my request both as the director and as my oncologist. Either way, the request to my oncologist would be enough. I did not have any hope of a need to go to the director.

My request is to be assigned to Dr. S A. I feel I need to see him within the next two weeks. I have been recovering my strength since ceasing Xeloda. But I feel a need to move quickly into a new protocol. Afinitor will not be one of the choices after all. See reasons.

A discussion is not necessary for me. The time we spent was enough to know I need a different outlook and approach to gain the best quality of life.

I am also wondering if you consulted with the oncologists who specialize in liver lesions and with I B, the advanced oncology certified nurse practitioner. I was hoping for time with her, though I forgot to mention that.

My hope is you will read the concerns and reasons for this transfer.

Also, I want my medical file corrected, see page four.

Sincerely,



then my concerns and reasons are on two pages. Mistakes one page.

"Every mistake I have made has proven to be invaluable information for someone. Namely, me." Me. Diane Dx 7/15/2011, IDC, Right, 2cm, Stage IV, metastasized to liver/lungs/other, Grade 3, 3/11 nodes, mets, ER+/PR+, HER2- Chemotherapy 4/5/2017 Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Arimidex (anastrozole) Hormonal Therapy Femara (letrozole) Radiation Therapy External: Lymph nodes Surgery Lumpectomy: Right; Lymph node removal: Left
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Dec 13, 2017 09:14PM Bluebird-DE wrote:

Concerns and reasons - I had to keep knocking the snarky bitch in me down and taking control..... to any who are interested. Sorry for monopolizing

Concerns and Reasons

You told me that no one in your care with liver lesions felt like I did, they were functioning fine and walking around. Which brings me to the American Cancer Society liver cancer symptoms. Mine included feeling full after a few bites of food, liver pain, exhaustion, losing weight without trying, nausea, vomiting, swelling in abdomen.

Also, I was still on Xeloda chemo pill, a loyal eight months, and was extremely dehydrated, exhausted, dizzy, nauseous, absolutely could not eat more than a few bites at a time, lost 23-pounds in three weeks which all smacks of toxicity. This was missed, in my opinion. I had hoped for a fluids IV the day I was there. I was thrown off my points too easily, but this was one of the needs I had, that being palliative care. Now being off the Xeloda for twenty days, I am finally eating more at a time, moving more easily and feeling stronger.

At the beginning of my first appointment you were challenging me on "all the oncologists." That affected the remainder of the discussion in my focus, talking points and memory. For the record, I have had only one primary oncologist, Dr. M G, who sent me to one researcher in Indianapolis and to one in Fort Wayne. Then two traveling oncologists who filled in when my primary moved to Alaska. And my DNP who has been there since the mass was found. And her referral to one oncologist before Dr. G, consulted for tests.

In your notes on my appointment you wrote, "She has been offered combination everolimus and exemestane. While reasonable, this would not be my first choice but she wishes to try this." This was not clearly communicated. I asked what is recommended if I didn't use the Taxol and you enthusiastically said you would choose the same as Dr. D. Very misleading. Especially after I felt you discouraged me from using the chemo infusion due to my condition.

You wrote, "The likelihood of benefit is rather small." This was left unsaid. I am reclaiming my life and to know the treatment option I had just chosen would be "benefit rather small" is appalling and deplorable, in my opinion.

On the subject of Afinitor, the common side effects are ones I can take little chance with. Pneumonitis in 19%: I had this during summer and could not use corticosteroids to recover, I am allergic to prednisone, proven with hives and heart palpitations. Lung collapse: My right upper lobe was collapsed for a year, just recovered around July 2017. New or worsening cough: I never stop coughing. Patches or sores in mouth or throat: There is a large thyroid nodule compromising my throat and swallowing. I told you of that from the beginning and was trying to tell you I will need surgery and to get a referral to Dr. _______ . Impaired wound healing: Afinitor and thyroid surgery, not the best timing.

I am grateful 1) your office overlooked setting up my chemo training appointment and 2) the lengthy delay in getting the chemo drug ordered since my prescription card was not requested and 3) for the snowstorms that have kept me from pursing that therapy choice. This given your opinion on it's ability to help me and my deeper reviews of the side effects that would be intolerable or even life threatening if they occurred.

When I reminded you the two areas of radiation, you absolutely did not know I had had radiation. You were quite surprised, in fact. You then said that because of this you did not agree with the interventional radiologist report on, "mixed response" and you surmised that the Xeloda had not been working for me.

Dr. B______, my medical file was clear on radiation and the compressed airways, thus the rush for radiation treatment. I called Goshen Center for Cancer Care on Thursday, November 2nd. I was told by intake that by Monday an oncologist would review my medical records and I would given an appointment. I was told patients were taken in order of severity of case. On November 9th the records had still not been seen by you from what I could tell. I was finally given an appointment for November 22nd. There was sufficient time to give complete focus to my file details.

The standing opinion from your notes is I am already dying. But I just don't see my life that way. I want and need an oncologist to have my back, commit to my quality of life and even possibly to creating no evidence of active disease.

I wonder if you have so little hope for me that you did not consider the reasons I chose Goshen Center for Cancer Care. The SIRT treatment, their version of the pharmacogenomics program testing to decide which chemotherapy or hormone therapy would work best for me. After all, I had just spent eight months on a chemo pill that was, in your professional opinion, not working at all.

One more thought.

Why did you say we would do palliative care or the Afinitor / Aromasin or the Taxol infusion but not palliative with these choices? "Palliative care is any treatment that focuses on reducing symptoms, improving quality of life, and supporting patients and their families. Any person, regardless of age or type and stage of cancer, may receive palliative care." But you led me to think that the palliative car would only be given with no treatment or hospice.

"Every mistake I have made has proven to be invaluable information for someone. Namely, me." Me. Diane Dx 7/15/2011, IDC, Right, 2cm, Stage IV, metastasized to liver/lungs/other, Grade 3, 3/11 nodes, mets, ER+/PR+, HER2- Chemotherapy 4/5/2017 Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Arimidex (anastrozole) Hormonal Therapy Femara (letrozole) Radiation Therapy External: Lymph nodes Surgery Lumpectomy: Right; Lymph node removal: Left
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Dec 13, 2017 09:46PM - edited Dec 13, 2017 10:19PM by marijen

Bluebird, I believe this oncologist will have never received a letter like yours. Great work but sorry you had to go this far.

Edited to add: http://www.sirtex.com/us/clinicians/about-sirt/

The SIRT treatment can be a palliative treatment....

Selective Internal Radiation Therapy (SIRT), also known as Radioembolization, is a liver-directed therapy for inoperable liver tumors. SIRT is administered by a specially trained Interventional Radiologist.
A microcatheter is used to deliver millions of radioactive microspheres into the hepatic artery, where they are carried into the arterioles and selectively lodge in the tumor microvasculature (for further information see Mode of Action).

Treatment Goals
  • Increase the time to progression
  • Extend overall survival
  • Potentially downsize or downstage tumors for liver resection, ablation, or transplantation
  • Provide palliation of symptoms

SIRT can be combined with modern chemotherapy or administered as a monotherapy, either during a chemotherapy holiday, in a salvage setting or as an alternative to local chemotherapy.

Radiotherapy, together with chemotherapy and surgery, is a major pillar in the treatment of cancer. However, the utility of external beam radiation in the management of liver tumors is limited by the sensitivity of the uninvolved liver parenchyma to radiation. Selective Internal Radiation Therapy with SIR-Spheres® Y-90 resin microspheres offers patients an opportunity to access radiotherapy for inoperable primary and secondary liver tumors whilst sparing normal liver parenchyma.

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Dec 14, 2017 01:07PM - edited Dec 14, 2017 01:16PM by jaycee49

Bluebird, I wish I had the mental stamina to write a letter like yours. As it is, the puny one I wrote took everything I had. If I went back through my whole time with this MO, the list of offenses would be long and varied. I'm really afraid that yours will not take the time to read your letter or be able to accept any of your views as valid. Mine would deny everything like a convicted felon. I also refuse to take that much time away from living my life to deal with this asshole.

Good info, marijen. Thank you. When I looked up palliative care doctors in my town, there were exactly zero. I read an article once that said MO's pass their patients to PCP's at end of life.

My urologist's NP said that if I am having such bad sx, we should do a course of something. That number (>100,000) to dx UTI's is quite arbitrary and sx count more. I am taking 500 mg Cipro twice a day. The low-ish count (40,000) in my latest urine sample is STREP AGALACTIAE (GROUP B). Nasty stuff more common in pregnant women. About 32% of strains of STREP AGALACTIAE (GROUP B) are resistant to Cipro so I may be creating an even worse situation. But that means 68% are not resistant, right? (Leave it to me to see the bright side.) My bladder has been what is called "colonized" for a while. Unfortunately, my urine samples are so contaminated (from taking Letrozole), they don't run sensitivities for antibiotics. I need to have some urine cathed (which I have done in the past very successfully) to get a clean sample. I thought of that yesterday during the interminable waiting but by the time I was almost done, I was exhausted and it was after 5 PM. (Got there at 3.) This practice is run the old fashioned way. Providers spend as much time as needed with patients so they always run WAY behind. I have to be satisfied with what I'm doing and give it a chance. I really want to feel well when my son and his wife visit for Christmas.

Janet (dx with MS at 41, slows me down some) Dx 4/25/2014, IDC, 3cm, Stage IIB, Grade 2, 1/18 nodes, ER+/PR+, HER2+ Surgery 6/4/2014 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 8/4/2014 Herceptin (trastuzumab) Chemotherapy 8/4/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/1/2014 Chest wall Hormonal Therapy 2/14/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/25/2016, IDC, Left, Stage IV, metastasized to bone/lungs, Grade 2, 1/18 nodes, ER+/PR+, HER2- (FISH) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Dec 14, 2017 05:21PM bcincolorado wrote:

I have a dear friend who is a nurse and when she was diagnosed with breast cancer decided she was not letting the doctors "bully her" as she put it. They are so used to just telling people what to do and how to do it and they all jump. She said no way. Think she had inside tract on that one.

Dx 8/2009, IDC, Left, 2cm, Stage IIB, Grade 1, 0/2 nodes, ER+/PR+, HER2- Hormonal Therapy 1/30/2016 Femara (letrozole)
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Dec 14, 2017 06:37PM - edited Feb 8, 2018 04:44AM by Meow13

This Post was deleted by Meow13.
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Dec 14, 2017 09:27PM Bluebird-DE wrote:

Janet, I know Dr B probably won't take time to read the reasons. In wrote it mostly for the next doctor to understand my transfer to him is not taken for little reason. Also in knowing how this once approached me on first appt likely means he has a pattern and reputation. If Dr B stomps non my letter I cannot be offended, I did my best, he didn't. I'm a writer at heart. Journalist background that helps me shoot out five pages in 20 minutes. Then I have to edit.

Janet, as long as your letter gets you to the next doctor you want, you are doing good.

Now I have to look into all possible chemo or endocrine therapy and SEs to choose some to go over with the new oncologist. Any suggestions? Anyone?


"Every mistake I have made has proven to be invaluable information for someone. Namely, me." Me. Diane Dx 7/15/2011, IDC, Right, 2cm, Stage IV, metastasized to liver/lungs/other, Grade 3, 3/11 nodes, mets, ER+/PR+, HER2- Chemotherapy 4/5/2017 Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Arimidex (anastrozole) Hormonal Therapy Femara (letrozole) Radiation Therapy External: Lymph nodes Surgery Lumpectomy: Right; Lymph node removal: Left

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