STEAM ROOM FOR ANGER

HollyDollyD

My little vent.

<<<RANT BEGIN>>>

I am so pissed off by the generalization of literature when I want to find an answer.

Mastectomy v. Lumpectomy, "Oh they are equivalent". Umm...no they aren't, if you go to PubMed and read the research. And depending on age, stage and a whole host of other factors, it can make a significant difference.

Risk of developing Lymphedema "Increases with an axilliary dissection." Yes, I know that. What I want to know is by how much per node with a decent r-squared or p-value.

Risk of contralateral recurrence and systemic recurrence without Tamoxifen and with Tamoxifen and with Tamoxifen and AI. Well, I can't find good data on the without Tamoxifen part (although I found a calculator - but without seeing the algorithm and looking at the underlying research and it's validity as well as when it was done...it's like playing bingo).

Yes, I get BC is overwhelming.

Yes, I get that most people do NOT want the statistics and the data.

But for those of us who use that to guide decisions, this effing sucks. I hate dumbed down data.

<<<RANT OVER>>>

runor

Hollydolly, what I find is that you can't even trust the data that is there. Because for everything you read, something else will contradict it. Trying to get to the Truth can be tricky as hell. I think those who accept research and their doctors word at face value have a much greater comfort than I do. I am a skeptic and do not easily just fall in line with what someone tells me. They have to prove it. Beyond a reasonable doubt. So far my overall opinion of all the reading I have done on various topics is : you're kidding me with this shit. I butt heads with people who grab onto an idea and say, oh yeah, this is the truth, this is the holy grail, ask no questions and you'll hear no lies. Sadly, this does not work for me. I hear your frustration.

DancingElizabeth

I know what you mean...I live in fear of the other shoe dropping. Very sick of this...I had a better attitude when I was in chemo!!

Anonymous

TaRenee - Your revealing sentiments scream of a broken heart and broken trust and survivor's guilt. Been there. Our friends were going through cancer at the same time as I - she was diagnosed with ovarian cancer and I with BC. She was courageous and she did everything allopathic medicine could throw at her so she would live. I didn't. I waited, I was too afraid. Two years in she died. I couldn't even go to the funeral, I felt so guilty for still being here. It was last year before I could mail a holiday card to him. Her husband had told mine that he better get me on treatment or I was going to die, this stuff would get me. Well, I didn't, she did. We all loved her, we mourned her passing. There is no understanding to be had. But I think the survivor's guilt makes it too hard on some of us too. Hugs for you. I have no calming words for you except I sort of understand.

Swess - Hoping it wasn't a flunk, they probably are not allowed to tell you anything. I remember when you found the job opening for your specific job. Has anything else come of that issue you faced?

HollyDolly and Runor - I too spend hours digging up reports, trials, facts and experiences. I print and read and cross reference in search of answers. Usually getting no where except a little more knowledge of what others have faced on a one-on-one with treatment. Not real clear info to go on.

CT SCAN - my scans of neck, chest, abdomen/pelvis was pretty unnerving. The doctor kept listing all the lymph nodes and nodules and lesions then in impressions he would say "likely due to progressive metastatic disease." Also right middle lung lobe is completely collapsed (used to be upper for 1 yr) as is the bronchus to the middle lobe (not to be confused with main lung bronchus). What is good is there is very little increase in liver lesions. And the pain is only if I have done something to aggravate like bend over and brushed the dog. I do not know when the this and thats grew but last PET CT was Oct 2, 2017. Could have been there then and not worth reporting du to size or SUV uptake. And that is what makes me angry. All of it is worth reporting. It means something to us.

SheliaMarie

So kind of you to remember bluebird. I never brought it up, so nothing ever came if it. Fingers crossed STD comes through though.

TaRenee

Bluebird, Thank You. Just knowing someone gets where I am is comforting. I’ve been building up the resolve to call Amy and I finally did tonight. She’s not answering her phone and her messages are full and not able to leave new ones. Probably just as well. I still don’t know what to say. We found out the arrangements today. Visitation on Friday and funeral on Saturday. I’m sure most of our school system will be there. We are all thankful that it is on Saturday as we all want to go show our support. I plan on going to the visitation but am unsure if I can handle the funeral. It’s juat so damn depressing

Funny thing. I called one of our former substitutes who had filled in for me and for Amy a LOT over the last 4 or 5 years to tell her. Last time I saw her was just after my diagnosis before I knew surgery or treatment details. Just the scary truth of “I have cancer”. About a week after I saw her she went for her mammo and they found spots on both sides. She had her DMX about two weeks after I had mine. She’s on her 3rd of 4 chemo treatments and will fill the TE when she is done with chemo. We talked about the sheer joy of having stains removed and the depression of looking in the mirror. It was a crazy talk but we laughed our way through. I had the best time talking about cancer and what it has done to US with her. It really is a sisterhood that supports each other. We don’t be want to be in it, but we sure do know Howe to lift each other up.

bcincolorado

TaRenee you are right that it does help when you find someone who "gets it" and it definitely helps to have someone who can be your personal sounding board when you need it. It still stinks.

Saturday funerals are the best way to go if you ask me. I know they charge more to do them most places. My BFF who has her own set of health issues including cancer scares and biopies have both said we want Saturday funerals. It is too hard for people to take off an be there sometimes and often employers won't let you off work unless it is a direct family member. That stinks too.

Anonymous

TaRenee - there are some threads on BCO that are not so active now but are wonderful and uplifting to read, no matter how much sarcasm is on each page.

Start from the beginning on any thread when you have time.

You know you're a breast cancer patient when

OMG They found the cure for stupid

Bonfire of the goddesses

Insomniacs place to talk in the wee hours

There is anger and sorrow and camaraderie.

Swess - I am in the production of applying for SS Disability. Daunting.

TaRenee

I think I’ll start with the cure for stupid. That sounds like a good one! Thanks for the suggestions

SheliaMarie

marriage falling apart. Not that it was ever good. But now I’mfinancially trapped. WTH do I do?? I cannot stand him.

HoneyBadger47

Swess,

I am so sorry. I have no advice that will help but I will be thinking of you.

You are in the middle of applying for social security, correct? Would you be able to affor living expenses on that if you had 1 or more roommates?

SheliaMarie

unfortunately, no. We separated 12 years ago and I couldn’t make it. And my income was more than what SS will be...if I even get it. And roommates are a no go. Been there, done that. It was awful. Never mind I still have a child at home.

bcincolorado

Swess you might want an attorney who specializes in disability claims to help if they deny your claim. I know they do not charge unless you get it but don't know how much the fee is if they do it. Try it first on your own though. Make sure docs are on board too.

Artista964

go to ssdfacts.com forums. Folks there know a lot about disability and tons of info. Best site for disability.

This is for social security disability.. mods there are very experienced.

Chicagoan

My mom died two days ago. It was a very rough 5 weeks-she had a massive stroke but was working hard to recover. After a roller coaster of miraculous improvements followed by setbacks, she died in peace. I was in peace, grateful that I will be the one to bury her, rather than vice-versa.

Yesterday I was finally back at my own home, working on her funeral service and clearing up another mistaken $10,000 hospital bill. The phone rang and it was Liberty Mutual-they are consultants who manage my medical disability program. I have been on long-term.medical disability for 11 months. My former employer pays me $400/month and pays for my health insurance until Medicare kicks in. The bulk of my disability income is now from Medicare.

The woman calls all cheerful on the phone: "We have decided you can go back to work!" I was like "What!" They had done a review of my medical records and based on a conversation with my oncologist's office decided there was no reason I could not go back to work. I asked if she had actually seen my medical records. I have had only one clean scan in the past year. My January 2017 scans were great-since I was grossly metastatic, Ibrance worked miracles. In April 2017 there was concern that I had a separate kidney cancer. In July 2017 something new and suspicious was spotted in my right lung. In October 2017 there was concern that something new is growing in my spine. My oncologist has stayed the course with Ibrance since overall I was feeling good. I'll have new scans this week to see if there is cancer growing in my spine. I have never been declared in remission/NEAD so I was completely stunned to learn the disability consultants think I am somehow cured. They want me to see another oncologist to review me and get me back to work. Has anyone heard of a person with Stage 4 cancer being declared fit to go back to work against their will?

The woman from Liberty Mutual put it all on my oncologist. I contacted their office via MyChart explaining in detail why I cannot do my former job given my energy level and weakened immune system. For the first time ever, my oncologist called me at home and said her Physician Assistant handled this based on office visit notes. Apparently when they ask me how I am doing now, I better say "Fine, for someone with Stage 4 cancer!" I don't have pain and have regained much physical strength but I have the fatigue that comes along with Ibrance. I feel so angry and frustrated. Even if I was feeling great, the likelihood of me being hired again to my area of employment is nil-it is well known that I have Stage 4 cancer. If my scans suck this week, this will all be moot. It just makes me so angry that even though I'm in Stage 4 I have to prove that I am not full of energy and vigor. I'll see the oncologist in a few weeks and try not to scream at the physician assistant.

I'm pretty sure this will get straightened out but it is so frustrating to deal with so many bureaucratic hoops, again and again. I have had so many screwed up medical bills. My last scan report claimed I had had surgery-which I never had. Even though I pointed out the error immediately to my oncologist (she and her PA apparently missed it), I was the one who finally got it corrected after numerous attempts. It's bad enough dealing with the cancer-but it feels like its the bureaucracy and bullshit that will finally kill me.

Rant over-I do feel better.

Meow13

Chicagoan, I am so sorry. My Mom went through an illness for a couple weeks and I felt helpless her doctors said she had the flu. She call me in the middle of the night to come over to her tell me how terrible she felt. I would call doctors make appointments to hear they didn't find anything. Everyday she seemed worse the day she felt better She had a stroke and we rushed to the hospital. Never have I felt so helpless but finally 4 days in intensive care they got her medicines worked out. I hate that stress of not being able to know what to do. It killed me to hear her suffering. My situation seems so small compared to yours and the stress was killing me. I can imagine yours was and is many times greater. I believe it will get sorted out and you should get ssdi with stage 4.

Micmel

Chicago~ I think that physicians assistant should find another job! They can't get away with that. That's crap!! If you're applying to federal disability, you should streamline through it all. The private companies are the real dicks here. Immediately file an appeal with them, I would have someone else fill out the paperwork, not anyone with the word assistant should never be used in the same sentence with cancer! I have the terrible ibrance fatigue, it could stop a train! So annoying! Don't give up. Immediately file a written letter to your disability company, so they have it in writing, they will have to go back and reevaluate your case obviously, you cannot be working! That's just ridiculous! Miss you around. And I am so very sorry for the loss of your mother. I remember she wasn't feeling too well and you were worried about her! I am truly sorry. You're a strong woman. Much love ~M

DancingElizabeth

Chicagoan - I think I would have reached thru the phone and b*tch slapped the Liberty Mutual lady. I can't believe "they've" decided you can go back to work. What. The. F@ck.

Despicable

Chicagoan

Thanks Meow, Micmel and Scared-I just needed a place to rant last night. I am on SSDI fortunately but this disability pays me a whopping $400 above SSDI. It's not a lot but of course it helps. It also pays for my health insurance until I am eligible to switch to Medicare. My gut tells me they are unhappy that my health insurance costs are so high thanks to Ibrance and are trying to push me out. I appreciate your sympathetic comments.

HollyDollyD

D*mn Chicagoan....I feel your pain.

If it were me, I'd be telling that PA if it EVER happens again, you'll be holding her liable and reporting her to the medical board for malpractice. I'm a kinda you get one mistake if that gal. And I would be making them sort it out. And come to think of it, I would probably be reporting it in writing to the medical review board anyway, so that if disability comes back to haunt you there's a written record of their SNAFU.

That being said, I'm in a bad mood, because they moved my surgery up by one week. So maybe I should look at this response when I'm calmer....

hugs,

Holly

Anonymous

It is like being caught in a pinch - they ask how are you feeling. Fine or Improved or Better are wrong answers??? Can't say you're depressed, that might get you locked up. Can't say you feel like hell because you have to prove it or something. They ask what is your pain level NOW. Right now? I ask them. Or a half hour ago when I was at level 9 and almost went to the ER? No, now. Well 3 now. But get it in there that I was level 9 because that counts, it really does. And what is your fatigue level. Now? Or most days when I am at a level 7 fatigue and can barely breathe? Now. Now a 4 since I just woke up two hours ago. Ugh. Chicagoan, I do hope your case is not interrupted and this just dissolves w/o much more effort from you.

Chicagoan

Thank you Holly and Bluebird. I so appreciate the empathy and good advice.

jaycee49

Bluebird, I think I remember you saying you were applying for ssdi. I did that about 10-15 years ago. Got approved on the second try. Long story. But, let me tell you, they LIKE depression. An online friend told me that after she got approved. I went to a therapist and got dx with depression. One of the many things that helped. Tell them how you feel on your WORST day. I can try to answer questions you have although this is very state dependent. The feds were pissed at NM when I got mine, complaining they did it too slow and turned too many people down. My file "was selected for federal review." Best thing that ever happened to my file. I did it all myself online and saw it as a job. I can dig out some advice I wrote to people later who also applied. Let me know.

Chicagoan, long term disability from work is different. I guilted them severely. I told them not only did they put obstacles in your way to get you to give up, they counted on it. This is their plan. Get people to give up trying. Tell them you have no intention of giving up, no matter how hard they try to get you to. I got approved right after I wrote a letter saying that. They need to know the jig is up.

MexicoHeather

KB870: I didn't want anything to do with that bell. After treatment ended, I found another oncologist for my follow-up and for ordering my future digital mammogram. I told my surgeon, and she said, "I thought you might do that." Ever been in a situation where you know someone is smart and trying to help, but is such an asshole? That was my Oncologist. I would get angry and then I would cry.

Chicagoan

Jaycee,

Thanks for your response. I did already start with the guilt trip and made it clear I do not agree at all with their assessment. Someone from the actual company called me on the qt and said to have my doctor call Liberty Mutual and try to kill this. I think it will go away but believe me, I am not giving up without a fight. It's not only for me-I am just flabberghasted that they want to get Stage 4 people off of disability even though they know there is no cure and the cancer can flare up at any time. Grrrr.

NotBrokenJustBent

I know nothing about this process but it sounds like with some effort on your part it will be straightened out but so what if you did go back to work and just couldn't perform, ie, you were late due to insomnia and a bad night, fell asleep at work from fatigue, performance was down, many missed days for doctor appointments and illness.... so what happens if fired because you could not perform the duties for which you were hired? This infuriates me and so sorry they are trying to do this to you. I have a different yet similar situation. I should be on Workman's Comp but I was naïve, tired of being bullied, and they just wore me down til I gave up. Huge mistake and to this day I am unemployed, unemployable and supported by family. Don't give in to them!

TaRenee

To follow up on my earlier posts this week. I went to the wake last night. It was PACKED. Lines out the door. Took an hour and a half just to get to see Amy. What a tremendous outpouring of support. I broke down a little when I got to Amy. When we left the line was still out the door and it was only supposed to last another 30 minutes. I’m sure they were there a lot longer. I was glad to see and hear so many people there to support her.

I decided not to go to the funeral today. The burial is going to be private for family only. I think they are going to need a break after the crowds from last night. I plan on going to see her later next week. I know it is going to be harder as the people fade away after the funeral.

Thank you for hearing me out and responding both private messages and on this forum. This cancer journey has many fascets. I am sure this won’t be my last cancer related funeral. I hope they are few and far between. But I feel better prepared myself for the emotional turmoil they bring.

Micmel

Tarenee~I am so sorry that this has happened. You're a good person and friend,you will be there when all the calls stop and the concern fades into living. You will be there when it's too quiet for her she might scream! I hope that she can find some strength in knowing there is no more cancer for him.....anymore. I hate you cancer. ~M~

Anonymous

Janet - yes please! Anything you want to send me. I needed to do this years ago but was making too much monthly from my business. Now the income is way way down since they closed the organic fertilizer division. I could sign it over to Hubby. Not sure what to do yet.

Biggest problem is that in all the years my taxes were done for me, we filed jointly. I always figured the fed taxes were taken out for me to later get the credits for SS and disability. Found out a few years ago they were not always taken and I was credits whort. IRONY! The less profit I made were the years I spent the most to grease the wheel of our economy, doing my part. Advertising, printing, websites, on and on and on and on. But those were the years I also worked the most hours - 40 to 80 hrs a week easy. And now I don't have all the credits I need. It makes me so upset. I need to research the SS forumk and get all the facts. I want to do this w/o an attorney helping. If I do it all correct then the approval will come w or w/o an attorney.

You mentioned depression. It is in my file. The one drug I take at night is actually for depression but I started it for cough reflex. And the oncologists have me listed as depressed. Hope that will be enough.

Artista964

definitely ask questions and research ssdfacts.com forums. Dont waste money on attorney just to apply. If denied then. Good luck. That forum helped me tons.