STEAM ROOM FOR ANGER

DodgersGirl

candy-678, an “early stager” here. My group supposedly had nurse navigators and all that support personnel you mentioned. I received 1 call from the nurse navigator right after diagnosis. She made 1 appointment for me for the one date/time I told her I wasn’t available. I may have questioned her abilities if that task was too difficult. And, never heard from her again. BCO is/was my support. No idea if there is anything local??

jaycee49

I received an email from the woman I talked to at Compassion and Choices. I'm pretty angry. She wrote a "bio" for me from what I sent her (a very short piece as an intro) and what we talked about in the long phone conversation. I guess they are not happy with me dragging my feet and not getting a move on. The bio she wrote is awful. Very poorly written with tons of inaccuracies, not to mention grammatical and spelling errors. Not me at all. I answered her that she should not use my name on that (piece of $hit) and can she please wait for me to have time to edit the piece I told her I already have written. I did mention, nicely, that I assumed people working for that organisation would understand that people with stage IV cancer have time and psychological constraints that prevent immediate compliance with requests from them. Was that going too far? I want to work with them but I've been pretty busy having CANCER. Maybe I don't have the time or patience for this activity. I need to decide. I'm really bad at deciding.

Betrayal

Jaycee49:

I have followed your postings for quite a while finding them quite informative and full of kindness towards others. I think your indecision is not uncommon to many of us with BC. We can probably all identify with the thought of having to make one more decision to satisfy the needs of others, rather than our needs, is just one demand and one decision too many. I find that I am more indecisive when pressured because I feel like my control is being subsumed. It is also about personal value. If we cannot attach a meaningful value to the demand, do we really need to meet it? For someone to assume that their "bio" describes you based on a short piece you submitted as well as a telephone conversation is not only ignorant but rude. I do not feel what you expressed as your reaction is "too far" nor were your actions unwarranted.

I had breast cancer but that neither defines me nor does it give others the right to treat me as "the disease and its sequelae" rather than as a person struggling with this disease. I struggle every day with some residual issue related to my diagnosis and my treatment.

Your stating that you are being busy having CANCER is valid and well stated as to your position at this time. You aren't bad at deciding, rather you are not ready to relinquish that right to decision making to someone who just wants to fulfill an assignment at your expense. You were far kinder in your response than I think I would have been. What is said about you in this "bio" should reflect who you are and how you want others to perceive you, not to fulfill their assignment. I find that sometimes what others write about us deprives us of being 3 dimensional and we are presented as being "flat". You have a right to be 3-D and not presented as "flat" Jaycee. That would be an unfair representation of who you are, so you go girl and speak your mind. Betrayal

Yself

I was prescribed spironolactone for hypertension and not told it was a potassium-sparing diuretic that was a female hormone that mimicked estrogen. I have had breast cancer twice. Both times, my cancer cells fed on estrogen. Letrizole was on my list of medications..

Breast cancer is no longer listed as a side effect of calcium channel blockers. The black box warning has been removed from spironolactone and my pharmacist told me CVS has no record of it ever having a Black Box warning.

jaycee49

Betrayal, thank you very much for your words. I got another email from the person at CC right away saying not to worry and to take my time. I am going to keep my options open for now. I want to work on what I wrote anyway. Maybe I needed a nudge to get going.

And for you, Betrayal and everyone else here, my sister was diagnosed with stage 0 BC when she was 57. Stage 0. She's 72 now. I love and respect her more than anyone else in the world. To this day, she is worried about recurrence. In the first few years, she would be close to frantic while dealing with taking her mammogram films to the facility where they would be read. (Weird, I know but it was a long time ago and there was some kind of insurance issue I never understood.) My sister is really smart and totally stable in all other regards but cancer still sends her mind spinning. Stage 0. My former MO told me she really didn't have cancer. (Thus former.) She had two surgeries and radiation. She refused Tamoxifen or an AI. Yes, they were recommended. (I told you she was smart.) Cancer is cancer. Don't let anyone tell you that you are overreacting.

Lita57

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Geez....I'd trade my de novo Stage 4 (w.tumors to brain, spine, bones, bone marrow, and organs) for her Stage 0 any day of the week. As a matter of fact, I'd be doing cartwheels in the street.

My days are winding down. I can barely walk, can't climb steps anymore, can't see, and hurt all over. The lymphedema ain't fun either. Yes, cancer is cancer, but some of us have to deal w.a bigger pile of turds than others.

L

jaycee49

I must admit, I have that knee-jerk reaction to people with dx like Betrayal's. I think, "what is she complaining about?" Then I stop myself. I can't diminish their situation. I just can't. Even if you only have one tiny little turd on your lawn, you could still step in it and get poop all over your shoe. And that's really hard to get off.

I feel for you, Lita, I really do. I would never be able to tolerate the things you do. Amazing. I hope you can figure out your next step. So difficult.

Yndorian

Lita you are right, I frequently think that there are other women in worse conditions than me. I see a lot of people worse than me at the hospital. But the fear, the sadness, the uncertain future... I' m so coward, I really don't know how do you deal with those all sh#@%t. Sometimes life seems to be so unfair. I wrote it thinking to you and I feel shame on me

Betrayal

Wow, Jaycee 49. Was not expecting to feel that my BC experience would be invalidated because I am not a "certain stage". My BC experience has been Murphy's Law of what could go wrong, did and my turd has not been so small. I did not give you all the dope on my experiences because I didn't feel comfortable revealing all at once. The stats beneath my postings do not reflect this since you have to choose from a drop down list. Women with my stage have no guarantee that they will survive this disease because of their stage at the time of dx. All I know now is that I have not been in those percentiles where I have a greater chance of survival. For example, how many women require a second lumpectomy ~ 20% and I got to be the lucky one with very slim margins which required more radiation sessions with additional boosts. The damage is permanent.

I came here thinking I would find comfort. NOT. And not sure about what you meant when you said I should not let others tell me I am overreacting.

Lita, I do not know how you do what you do and still find the time to be willing to share your experience. I admire you and your spirit.

Have a good day.

jaycee49

Betrayal, you totally misunderstood what I was trying, and obviously not succeeding, to say. I do not mean to invalidate your situation. I was actually trying to validate it by saying that something that may LOOK small can really turn out to be large and difficult. Time to tone down my symbolism. I apologize.

bcincolorado

Betrayal everyone can vent here. Staging does not affect how cancer affects you mentally or the mutilation of your body or stupid medical people. Complain away.

Lita57

What gets me is when drs minimize cancers. If it's not St 1 or higher, they don't really think it's that big a deal - - but YES...ANY CANCER, no matter the stage, IS a big deal. It disrupts your life...as in lumpectomies, chemo, radiation blasts, and never-ending appointments. You may not have to have as much chemo and rads as a St 3+ person, but it still changes your perspective forever. And if you're not St 4 already, there's always the fear of it coming back in a much more aggressive form.

Even a relatively mild cold virus can take a turn for the worst and become pneumonia - - - and you could die from that.

A cut or scrape can become infected and go septic - - - and you could die from that.

When it comes to medical issues NOTHING should ever be downplayed or underestimated.

But nevertheless, if I had a choice, I'd still rather be St 0 than St 4.

L

Betrayal

After lurking for 3 years I felt this was a "safe" place to be able to express my anger over experiences I have had during this BC experience. I was looking for support that I have not been able to find in support groups, from the nurse navigators nor even from my physicians' who also play the comparison card with the "you are so lucky that you don't have ... "(you can fill in the blank with whatever you feel is appropriate). The bottom line is if I was really lucky, I would not have had BC!

What I have learned by watching is that none of us have had it easy since dx, none of us could predict what we would feel, what our individual experience would be, how we would respond or when we "will be over it". Runor wrote a very telling description of the difference between sadness and depression that struck a chord. While others want to label me with depression (which I am not), I am functional and feel that the sadness she described is what I experience on some days and it can be utterly paralyzing. Most days I am able to control it but there are some triggers (and they vary) that let it out again. I have gotten really good at hiding it though. It wakes me in the middle of the night and makes sleep a challenge.

So for the sake of peaceful coexistence, Jaycee49, I accept your apology. Neither of us can walk in each other's shoes but we each have our lived experience; you have yours and I have mine. I will leave it at that.

bcincolorado, thank you for your kind response. This is touted as Steamroom for Anger: a forum for emotional crises, so thanks for telling me I can complain away.

nanette7fl

Candy, I have a nurse Navigator and will have her until my 1 yr anniversary. After that I will get a different nurse Navigator for as long as I choose to have her up to 5 yrs. So yes there is one for the newly diagnosed but there should be a follow up nurse Navigator in your area. You could call your local hospital to see if there is a nurse Navigator assigned there. If there is she should know about a support group available. We have one and it's open to the newly diagnosed to longer term survivors. My local group has quite a few women who are long timers, some who have a reoccurrence a couple whi are dealing with mets, as well as the newly diagnosed looking for direction and hope but this is a closed group and not publically advertised.

JanetMara

I agree Lita,ONCOLOGISTS are just focused on CHEMO and the money the get from CHEMO,they don't care,they have no time to explain the treatments and the side effects of CHEMO,even pain and low platelets.The LAB fax the blood test results to ONCOLOGISTS a day after and doctors of office don't even bother to call and ask if patients are okey,if they are bleeding or not,they do not give precautions or advise to avoid medications if needed.It angers me because they do not call me and I receive the results 4 days after doctors receive them.

Just poring out my anger.

dtad

Yself...so sorry you were prescribed a drug that was contraindicated due to your history of BC. IMO it wouldn't be listed as a side effect. However, a good doc will look at your medical history and also the other drugs you are in. Your doc had no business prescribing spironalactone and I would find a new doctor!

nanette7fl

JanetMara, I'm sorry you have an MO who doesn't get it. Mine is great. We met yesterday and he's actually being very cautious with my being on Kadcyla for residual tumors. He is pushing for me to change to Herceptin and Perjeta because I think he's more comfortable with that. I'm his 1st patient with BC on Kadcyla. I'm fighting to stay on it as I was getting round 2 yesterday. I'd rather him be overly cautious about this than comfortable with H/P. We did reach an agreement that if my neuropathy from Taxol & Herceptin gets worse or not better then I'll switch over. As he said only 20% of patients get neuropathy on Kadcyla...I told him I'm not on that 20%!

Mavericksmom

Betrayal, I hear you and agree, stage 1 can be horrible.  I also hear others like Lita57, for whom I have to agree, stage 0 would be way better than stage 4.

I was first diagnosed with stage 1 IDC. When I say "I hear you" on what could go wrong did, here is a short list of what happened to me in 2003.

* I was scheduled for surgery day two of my period, the heaviest day for me.

*They put me in a too small wheel chair and wheeled me to the other end of the hospital for my needle localizartion and injection/scan for sentinel node biopsy. I was too scared and embarrassed to say anything and ended up with huge welts on both thighs.

* While waiting for the scan the nurses disagreed on how my gowns were on (one open in front, one open in back), they removed both, left me standing stark naked for a few minutes and another patient, a man, was ushered right past me!

*My sentinel node biopsy failed and I had the whole fat pad removed with 24 nodes all neg.

*My skin on my breast turned bright red and stayed that way for years.

* I  developed lymphedema in my arm immediately after surgery

*I got extremely ill from chemo, only the last round was I able to get through it without a lot of discomfort or nausea

*I was burned so bad by radiation that I had jelly bean size blisters on the top of my breast and the bottom skin literally sloughed off.The RO looked at me and said "I knew that was going to happen!"  How dare she not tell me!  They refused me any cream or lotion.  My MO was furious and wrote a script for Sivadine.

*They ignored the orange Allergy Alert wrist band that I had an allergy to adhesive when I had my port put in and a re-excision for clean margins. I had to remove the bandage over the port the next morning, it was covered in tiny blisters. That prevented me from having a MUGA scan before my chemo.

*I was supposed to be put to sleep for the re-excision and port surgery, they covered my head with a sheet, no one ever checked to see if I was awake and I was awake through most of the surgery.  I felt pain although not the full extent, I couldn't move, I tried holding my breath so someone would notice, no one did. More than half way through the operation the anesthesiologist realized I was not out and gave me more anesthesia.  I was so traumatized I couldn't tell anyone.  I woke up at home screaming in the middle of the night after a nightmare that I had been declared dead but wasn't and was being put in one of those refrigeration drawers you see in the movies and I was helpless, just as I was during the surgery, to get anyone's attention.  After confessing to my husband, I wrote a letter to my surgeon.  I told her all the conversation that was going on while I "wasn't" under.  She called and we talked.  I had the port removed under local anesthesia because of that.

There is more, but I will spare you.

Yes, even stage 1 can be horrific.

Little did I know, after four doctors swore I would never get cancer again, 15 1/2 years later I came down with ILC.  In between, my mother, oldest sister got invasive breast cancer. My sister had both bc and lymphoma at the same time!  She passed away of MSD caused by the treatments from the other two.  A few weeks ago my other sister was diagnosed with breast cancer.  She has surgery this week.

Breast cancer is an emotional roller coaster ride for everyone diagnosed. 

Rant and vent, we all need this thread, we all support each other. Two things are true, my breast cancer could always be worse, and somebody has it worse! Too many "somebodies!" 

I love you ladies, all of you!  (((((CYBER HUGS))))

Betrayal

Mavericksmom:

Thank you so much for sharing your experience and for understanding that no stage of BC is a picnic. If it was, most of us would not be using this website to relate how life changing it can be. Yes, my breast cancer could be worse but I do not know what the future holds for me with a mixed BC dx. My MO says that a recurrence will most likely be ILC which is super sneaky, more likely to not recur in my breast (unless it pops up on the right) and can wait 7-10 years to show up. I think she is hoping that I die from some other disease in the interim.

The day of my first lumpectomy, the RN inserted the IV in a vein right by my little finger on my right hand (dominant hand). It was not stable and yet everyone insisted on trying to make it work by repositioning it with more tape, putting pads under it and my complaints that it hurt were ignored. I went to the Radiology department for the insertion of the "barb" to locate my BC for the lumpectomy and asked to use the restroom. The nurse wheels me to the restroom, we looked at the toilet which had been disconnected from the wall and was lying on the floor. I told her I didn't think I could use it and when she looked up to see what I was talking about and we both started to laugh. She did find one that worked but that was the last I time I laughed that day. I still smile when I think of this experience.

When the anesthesiologist came to see me I insisted she remove the IV (which she expressed her annoyance about) and replace it because I knew if they put drugs through it, it would damage the vein and have to be restarted anyhow. The bruise I had on my hand from the badly placed IV lasted more than a week and since it was in my dominant hand by the little finger, I kept hitting it. I am also allergic to adhesive tape and get blisters that peel and ooze. No one ever asks what my red allergy band is about and I have recovered from anesthesia to find myself slathered in adhesive tape.

The BS did not believe in a local prior to administering the radioactive tracer and when injected into my nipple I let our a loud yelp at which point he told me I was a "baby". Not what you want to hear from the surgeon who will be operating on you and it was too late to say I was leaving. Post-op my chest was swathed in ace bandages since they could not use tape and they did not want to stay in position. The RN in the PACU was phenomenal. He kept my pain under control and offered advice as to what I needed to say to get better drugs since I am also allergic to most narcotics. The BS spoke to my husband post-op but I do not recall him talking to me. The day after my surgery I discovered my tongue was bruised and swollen. It made talking and eating difficult for several days. I was told by the anesthesiologist I probably "bit my tongue" but I think it was most likely a result of a poor airway insertion or removal. I was not given a bra to wear post-op (nor told to purchase one) and it was quite a challenge to control swelling since the sports bra I tried to use was so difficult to get on with the sutures I had. I had one sentinel node removed because that was all the BS could find in my "fatty tissue" as he wrote in my chart. So the most positive memorable moments were the restroom blunder and the RN care while in the PACU.

I was hopeful that after this surgery all would be well and I could resume my life. I was so very wrong and each experience after this had no positive memorable moments. Thus the reason, I still have bouts of insomnia with flashbacks that cause night terrors, hot flashes unrelated to room temp and know each joint intimately since they are all so painful waking me several times a night. This is not a "new" normal and I will throat punch the next person who says this to me. This is the disease that keeps on giving and giving and giving. I'd like to drop out of this "giving" club and have my old life back.

Lita57

That surgeon is an anal orifice!

Now that I'm circling the bowl, I just say what ever I want, and I would have said, "Eff you, buddy! Have you ever had some crap injected into YOUR NIPPLE?"

His answer probably would have been "no."

And then I'd reply, "Then shut the Eff up! And BTW, I'd rather be a baby than an anal orifice!"

Meow13

Watching the baseball game and stupid breast cancer awareness $hit, give me a break happy mother's day remember to get a mammogram. Stick it where the sun doesn't shine.

Ameliaz281339

What about doctors who are dismissive to your questions and worries?

And that coworker whom I helped to get a promotion two years ago? And now since I am not at work (doing chemo) tríes to get another promotion speaking behind my back. Very grateful, isnt it?

Mavericksmom

Meow13 I thought I was the only one who thought that! Thank you!

movingsoccermom

Hello Ladies,

My rant is cancer returning in the incision.....thank you dribbling in surgery or seeding from biopsy. Sadly there is 102 years of BC within my close family (Aunts, Mom, Sister). NO ONE has a recurrence. Not from BC, not from ovarian cancer, not from uterine cancer. NO ONE but me. Gee thanks. What a nightmare!!!!!!

Betrayal

Lita57:

Thanks for the laugh. Actually where I would liked to have injected that arrogant a** was lower. As a BS involved in a local non-profit that offers support to women with BC he is widely regarded but it is all a facade and lip service. The recommendation for the BS came from a nurse navigator who I trusted and again was betrayed. My "barb" insertion took longer than anticipated so I think I was the object of his annoyance/wraith because of his OR schedule.

His a**holeness was truly apparent when there was the week delay in receiving my biopsy results that I later found he had sat on for over 24 hours. I called him, so lord knows when I might have gotten the call? I was told "IDC" only so when I called later to ask about use of mammosite, I was immediately referred to the RO and was told to make the appointment ASAP. Since I was new to this "game" I did and was able to get an appointment faster than I got my bx results! Unfortunately, I had to have whole breast rads x 34 treatments.

It was the RO who reviewed the biopsy results with me and was shocked when I erupted in tears because I was also told I had ILC and DCIS which was on the biopsy report I had not seen until this appointment. The BS did not even have the courtesy to give me a full report! I asked the RO if I could switch BS and was told that no one would want to clean up another surgeon's surgery especially since no markers were left at the excision edges. The RO was diplomatic, explained why mammosite was off the table because of the IDC at the margins and the DCIS. So I made arrangements for my "excisional lumpectomy" by phone so I did not have to meet the BS face to face. I had my original stitches removed at the time of this second surgery. Felt it was a guide as to where he needed to cut so he could not screw it up. The relationship deteriorated from the day of my second surgery when he tried to play "almighty god" about the type of anesthesia he wanted to use. I asked if he was having surgery because what he proposed was not acceptable " conscious sedation" and I refused. I then had to argue with anesthesia about what I wanted (since I had awoken during a conscious sedation procedure when they "rebroke" my broken nose) and what I would do it they refused, which was haul my butt out the door. I got the anesthesia I wanted, saw him for suture removal and then fired him. I have not seen him since. I would not recommend him to anyone and ignored his MO referral figuring enough of his pitiful advice.

Lita57, I value your words and your humanity. It is evident that no one has taken away your sense of humor nor right to advocacy. So keep enlightening those who do not meet your needs, we all need to be advocates in this day and age of "business" medicine. If you take my money, then you need to listen to my concerns is my new mantra.

Betrayal

Still cannot get this site to list the information I have posted under treatment. I do not know why it is selectively list parts but not all of what I have entered. Anyone have a suggestion? Plus the drop downs are less than inclusive.............Thanks

Snickersmom

Runor - you really know how to put things into perspective for me! I just love your posts and you are SO RIGHT ON, GIRLFRIEND!!!

Ann/snickersmom

AliceBastable

Betrayal, that sounds like a primitive medical facility! And the BS is certainly living up to those initials! Since when do surgeons do all the preoperative stuff like injecting the tracer? My hospital had a different doctor for that, I think one of the Interventional Radiology doctors, who first applied a topical numbing, waited until it took effect, then did the tiny needle numbing, and THEN did the radioactive injection. And maybe my BS had some input about the anesthesia she prefers, but I only dealt with the anestheseology department - first a nurse anesthetist, then the anesthesiologist. And I was at one of the smaller hospitals in this city. I'm so sorry you had such a horrible experience.

Betrayal

AliceBastable:

I only wish it was, but it wasn't. It is a reputable large hospital system. The nurse anesthetist told me what the surgeon wanted for "his surgery" and I told him that I was the one undergoing surgery and I did not want his anesthesia, I wanted mine! The last I remember was having something injected into my IV line and then waking up in the PACU rather than the outpatient surgical area (which was where I was headed with his anesthesia). So I have to surmise, I got what I wanted. The RN who took care of me the first time in PACU, recognized my name and I woke up to see him. He asked if it "was okay that he had swapped with another RN" because he knew me. Of course it was because the care was exemplary unlike that I have ever received from my MD's. Made the end of that nightmare more palatable because he cared. To this day I avoid male MD's because I no longer trust them nor do I buy into their "godliness". My faith disappeared with my dx.

I have followed your postings online and enjoy your sense of humor as well as the "truths" you tell. Plus I love your quote. Thank you for sharing with us.

AliceBastable

Aw, thanks.

I was lucky, both the surgeon's at the breast center at the hospital I use are women, as is the oncologist I see. The RO seemed dickish if questioned, but we may have misunderstood each other. By the time I got to radiation, my brain was pretty much on the fritz for any more medical information.