Anyone else hugely regret getting "treatment "??

macb04

I will preface this by saying i have many negative thoughts  about the "care" i received. If someone is happy  with their care, great, more power to you, i am not and don't mean to offend anyone but i need to vent. 

I am sick of all this talk about being grateful. I AM NOT  GRATEFUL. I feel cursed and unlucky and jealous  at times of every woman  who has two matching breasts. They told me that chemo is 90 to95% ineffective for lobular cancer. I am so messed up by it. They call it that lovely catchy name, "chemo brain". I just call it brain damage. It has gotten  worse in the past  year. I can't find words. I go from being a fairly  functional computer as I am talking, to a Rolodex that I have to flip through  as fast as I can to find the words. People who don't know about my history don't understand why I fall silent. They don't get that my brain grinds to a halt. I get embarrassed  and flustered trying to cover up my lapse.

I am told that I am not a Normal  cancer patient.  If i was i would have stopped living in the past.,that I  would be happy by now. It is two and a half years since I was butchered. I have had enormous infections two separate  times, last September  and this past  September that happened  because i have severe  radiation  fibrosis.  My circulation  is very poor and i found out about  Hyperbaric  Oxygen  therapy, the only known successful  treatment too too late. MY CHEST  IS LIKE SHOE LEATHER. The Hyperbaric therapy center said it was a "shame " I  hadn't started Hyperbaric  Therapy last year, that I might never have gotten so many horrible  infections.  The turds at Seattle  Cancer Care Alliance  (SCCA)never said squat about me having radiation fibrosis,  about being so damaged that i failed at my reconstruct surgeries  twice. Both times they took about 300cc 's of pus off my chest. Why didn't they tell me??? WHY?? What is wrong with them, do they lack compassion, or merely competence? ?

I am having reconstruction  surgery  number 8 on Monday, Dec 1st.  I haven't  given up, but it is  very hard  not to be scared and discouraged.  I thought repeatedly  about killing myself when my last effort crashed and burned despite all my pain suffering  and effort. Not to mention I had to pay 2000 dollars out of pocket for what my insurance  wouldn't cover. I JUST WANT TO BE DONE!!!!        I want two roughly symmetrical  breasts with nipples . I don't think that  is too much  to ask, to just be able to get dressed without putting  fake sh*t in my bra.

I don't really want an implant. I worry a lot  about capsular  contracture.  My chest is too too tight because  of the radiation fibrosis.  I am doing fat grafting with BRAVA. I know about DIEP and flap sugery.  I don't  want that either. I may in the end have to give  in and get an implant under my grafted fat and over my pectoral muscle.  

It will be settling, putting up with something  I hate, all because  some fools decided to poison  me and millions of other people for profit, for GREED, base and senseless  GREED.        I have no  family hx, none,  going back generations. It isn't right, a crime has been commited against me, against all my fellow sufferers. The Dark Ages live again in America. We are just all supposed  to be so grateful that our wonderful doctors, our medical saviors have deigned  to come down from on high and help us pitiful  wreaks who were so defective as to get cancer in the first place. Don't  ya know how  lucky you are? They say"You are alive".  Well, I was alive before  the butchers at UW got ahold of me. 

I say that all this early detection  is all a fairytale. I had 5 useless  mammo's,  5 of them. The looney oncologist at SCCA wanted me to get  another mammogram.  I laughed at him. I asked, "What,  6 times the charm??" "So now they will pay attention  and give me an accurate, true result??" What utter BS. Why don't  they admit that the test is woefully inaccurate??. I guess no one challenges  them for this idiocy they foist off on all of us victims of the cancer industry. 

Then my sister-in-law gave a lecture that I needed to get my mammo's  done. I am sick to death of this supposition that people  like her stick me with. That there is a safety net out there manned by the dedicated medical "establishment " I know it is really about her fears. Well i have enough fears of my own, I  can't carry her fears too.

I will never give one dime to Susan G Komen. I hate that stupid "Breast Cancer Awareness month that the drug companies pay for. I will never feel lucky or grateful.  I pray ever day to see my girls grow up, they are the only luck I have ever had.

I

Meadow

Mac, I just read your post, and I am SO SORRY you have gone thru all this.Your venting does not offend me one bit, I just want to help in some way. I dont know if there is a normal cancer patient...we are all so unique and our bodies respond to treatment differently, and it sounds like you have been through rough times. I just want to share what a healing therapist shared with me one day...I had told her I didnt know how to feel about my body, my cancer, should I hate it? it was trying to kill me! My own body was trying to kill me, how should I approach this mentally? I wanted to fight to live, do I do that with anger? can I fight this cancer by hating it out of my body? Whatever I needed to do I was ready to do it to live. She said 2 words that have stuck with me ever since. She said, "Love heals". Those two words resonated in my heart. They made sense. So I focused on loving my body, scars and all, thru chemo, mastectomy, radiations, reconstruction. Do I miss my old body? Hell yes, every day. Do I "love" my new body? not yet. But I love that I am here to celebrate Thanksgiving tomorrow, to live this life I have without 2 matching boobs. I can do that. So I quess I am wanting you to move from the anger, the hating, the negative, to a positive place. I dont know if you are a believer in prayer, but I have found it to be very freeing to give up my struggles onto a Higher Power. Also, my family needs me, and they dont care if my body is a war zone, they just need me. And that is very satifying. Do you feel like you are experiencing an imbalance that might be making you feel worse? like hormonally are you ok? Treatment screws us up so much, and it can make us feel like you are now. Chemo brain is real, I do that pause thing too, all the time. It can really bother me too. I have found people to be ok with it, it bothers me more than them, you know? I hope my posting has helped you some, that was my intent, not to be preachy or blow smoke and butterflies up your... you know what. Keep venting here, and I hope others will chime in soon. I am sending you a cyber hug. I hope you feel better beginning now, day by day.

Meow13

Mac, I am also being treated in Seattle because my oncodx was 34 they wanted to put me through a tough chemo regiment. I said no way in hell. I was made to feel like a coward to everyone but my oncologist. I wasn't willing to poison myself hoping to kill a few cancer cells. No way was chemo a cure, my onco told me immune therapy just isn't there yet. Why the hell not, tons of research and we still treat people barbarically. I want my 50's and 60's to be healthy and energetic. Iam taking God forsaken hormone therapy. As long as it ddoesn't permanently damage my health so be it.

I did have an excellent Diep result from uw hospital. Although the residents and interns seemed incompetent at least my surgeon was great. I was so glad to get released and heal on my own.

I understand and hear your anger heal us for Christ's sake, treatment should not be so brutal. It is torture and we are not cowards because we don't except without question.

I hope peace and real healing for you. You are not alone.

blondiex46

Mac i am sorry that this happened to u.  But just think u wouldn't  have met all of us wonderful  people.

I know it is scarey n painful and downright sucks. Not saying make the best of it saying, hugs all around.  It has 2 get better . doesn't it. 

Happy Thanksgiving 

Rosevalley

Mac- I am grateful to read your post. Here it is Thanksgiving morning and I have been up since 5:30. Can't sleep. You are not the only one who feels they have been sold a bill of "goods" that were more hurtful than helpful. I have 8 mammograms and can see my cancer in them.. got little cards saying everything was just fine.. got diagnosed stage 3A 8 months after a clear mammogram! I was told my ever thickening left breast was fibrocyctics.. no worries. Even when they knew it was cancer they wouldn't even try to decern how huge it was.. it was like the Emperors' new clothes and a circus! The surgeons, oncologist, GYN, radiologists... all insisting the ultrasound measurements were correct 1.9cm. The actual mass measured 4.5-5cm. No films to try and figure out why the mass was so huge zip--- they started carving in surgery and found unclear margins and a mass 5.2cm! No surprise to me! The unclear margins were 1.8cm out and that sucker was over 6cm. I had them take everything off- 2 surgeries. My pathology report was wrong.. no ductal cancer I have invasive lobular cancer - and a 1.5cm metatastic sentinel lymph node full of cancer! Fools. They couldn't find a tractor in a barn with directions! Then they gave me ACT and the effects have ruined my life every day since.

My '07 moron of an oncologist knew that older chemos were more effective on highly ER PR her2 negative tumors which I have - like CMF etc. but insisted on dose dense ACT. So here it is 7 years later and my feet drive me nuts every day of my life, no feeling in my bladder (3 UTI's this year), heart arrythmias, no stamina terrible edema. Skin still so tight from radiation that it's burned onto my chest wall. i am still suntanned and couldn't do reconstruction if I wanted to. Yay thanks for nothing. Oncologists cover for each other nd they lie in their charting. I mean I have complained bitterly for 7 years about the side effects and STILL if you read my chart there is NOTHING stating I have neuropathy in my feet, nothing about no feeling in my bladder and subsequent issues and they gleefully told my heart output and condition is the best it's been even before chemo! (I have terrible edema, can't walk anything like I used to, can't climb stairs get short of breath...but it's all roses on paper!) I give up it's a terrible scam and lie. The whole oncology paradigm is seriously unethical. Unfortunately it is the only game in town and they know it. So if you want any chance at living then you have to take what they dish out. No recourse, no patient advocacy - it's all their terms and their game rules.

Someday some one will spill the beans on the lies they perpetrate. That some chemo's are not worth it for some cancers and a lighter less aggressive approach is more effective with a MUCH better quality of life for the patient. Quality of life is EVERYTHING in my book and if they leave you so damaged that everyday is miserable who won? The oncologists who got paid the big bucks, big pharma - the cancer who continues to grow?Knowing what I know now - I wouldn't touch chemo. Also I think telling BC patients with node positive cancers they have a shot at being cured is also a LIE. The overwhelming majority of late stage node positive cancers have a recurrance and end up being stage 4 eventually with only a small percentage beating the odds. Truth needs to be stated clearly upfront before you begin treatment.

I am sorry about all you have been through, but you are by no means the only one. I suspect you have lots of company. Happy Thanksgiving and I hope your surgery goes well.

leggo

Mac, I'm so sorry. You are by no means alone. I even go a step further and wish I hadn't even gone to the doctor to get the diagnosis. In hindsight, I'd of rather not known in the first place; just live until I died. Cancer was always my very worst fear and true to what I imagined, it has taken an unimaginable toll on my body and emotional well-being. I just keep trying to put one foot in front of the other and hang on for another day. If I didn't have kids counting on me, there's not a doubt in my mind I'd have stopped this nonsense a long time ago. I, like blondie, above, hope it gets better and keep telling myself it has to. Definately not easy to rationalize.

macb04

Thank you all so much. It helps to hear your commiseration and support. 

I had an 11 x 9 cm thing. They told me it was only 5cm on MRI. I deeply regret I let them chop me up.I should never have let them near me, the evil butchers  The misery never completely  goes away.  I told my husband, who is tired of hearing  the same lamentations over and over, that it is like I am in a leaky boat far, far out to sea and that when he comforts me he is temporarily  bailing out the boat and keeping me from drowning. But tomorrow,  or the next day, the boat  starts to leak again  and I  am in danger of drowning again.  Every day is a c day since 6/6/2012, devil's diag day. 

I looked up malpractice  and oncology.  They have some of the lowest  rates in the industry, not suprisingly since the people they screw over are either too sick or are dead. I wish i new a lawyer who would nail their ass to the wall at SCCA. None of those C's stand for competent. 

I also didn't mention I am losing my high frequency hearing AND loosing my night vision. Even with glasses i am starting  to to have trouble driving at night. How will i work if can't drive at night? It gets dark at 4o'clock here  in the winter. 

If i go back to the morons  at SCCA and tell them about this horrible fibrosis,  or the lack of circulation  causing  these massive infections,  or my pervasive  brain damage otherwise  known  as "chemo brain", or my going deaf or night blind.? You know what they'd say,      "good luck with that".  They don't give a crap about my suffering. That is why Dr Christine Fang at SCCA gave me Miaderm  samples to prevent burning with radiation  AFTER i was already burnt.   Real smart,  huh? I was in panic mode and had open sores all over my chest and bought 2 tubes and had  them overnight shipped for $80.00. I didn't read the package instructions till it arrived. It said NOT  TO BE USED ON OPEN WOUNDS.     Then I called the manufacturer  and asked how long it had been on the market,  they told me it was available  for the past  years. FIVE (5) YEARS!!!!, When I confronted Dr Fang about this seemingly  incompetent care she justified by saying that I was the first  person at SCCA to use the cream. She even wrote in her chart notes that I was treated  with it.     How  the f*ck could I..??? I was tooo tooo late trying  to use it as I was already burnt to a f*cking crisp with bleeding sores all over my chest. God help me but I hope she gets c so she can try out her own incompetent, useles, mutilating care.    

They should give full disclosure. They should be required  by law to list all the horrible side effects, even if the consent is 10 pages long.  It would disaude  a lot of people. I certainly believe my "treatment "  to be disfiguring  and almost completely useless. Meaning that all this misery  and suffering was for nothing. They told my 10 year survival was 30%. Crappy odds. I didn't really understand  that when they started the torture,  i was too freaked out and in shock. My quality  of life sucks, sometimes really badly. I am frightened of Monday's  surgery. I desperately  need it to go well. I want a breast for X mas.

I work mostly  so i can afford all the supplements  i take. Don't feel safer that i let  them butcher, fry and poison me. Thats why i do so many extra things, in addition to great diet,exercise daily and see a counselor. I  get IV vit C a couple of times a months if i can afford it. I paid 2000 for my surgery that failed on September 23, 2014, and i have to pay 2000 more for Mon, the 1st's surgery. 

I love my girls, i did all this for them, even though i didn't believe  in it. I try to be the best mother i can. I just didn't know the toll would be so high, that i would sometimes  be eaten up with regrets.

I don't blame my body for this. My mother was an oblivious, careless  woman who chainsmoked me into ill health my entire infancy, childhood and adolescence.  I had  thousands of antibiotics  and was sick allll the time. Last year i read a Fred Hutch study that said something about, if you have 25 courses of antibiotics  in a 17 year period your risk of bc was doubled.  WELL I  had HUNDREDs of courses of antibiotics.  The irresponsible,  lunatics doctors  used to give  it out like candy. So in reality i had a ticking time bomb in my chest from the minute i was born.  Then there was a Canadian  studyfrom 2012 that said something about 30 to 70% .? Risk bc if exposed to secondhand  smoke in childhood /adolescence.    So no I don't blame my poor poisoned body. 

Wow, seems like i never run out of things to say. I wish i was religious  so i could get comfort  that way. I talk to my friend, my husband. I will eat good food today and be grateful  only for my healthy sweet girls, my husband (most of the time), my two good friends and a roof over my head. I will never be grateful forwhat happened  to me. I just cross my fingers and hpoe to survive it and some day have a day without bc.

Blessings and good wishes to you all my sisters.

exbrnxgrl

macb04,

I wish I had some adequate words of comfort. You have been through a nightmare. Your children are a wonderful motivation to go on and their love must be great solace. This is a good place to vent so visit as much as you need. Take care.

WinningSoFar

I've been fortunate, I guess, since no matter how bad my treatment was (and it was pretty bad at times particularly when my bowel perforated and I just missed dying of septic shock), the alternative was far worse, as in 'being dead'. So, no complaints from this corner.

Meow13

Good luck to you on Monday's surgery. I will be praying for a good result. My plastic surgeon at uw thought I should consider a little tweaking with fat grafting. Maybe next year. I look fine in a bathing suit and I keep getting more and more nerves coming back to life so I am happy.

Lily55

I regret having radiotherapy as it has left me with pain, discomfort and numerous fibrosis problems making reconstruction a lot more difficult, I cannot forget about it as my body reminds me every day....................

bobogirl

Macb04,

I feel your pain and sorrow and stress and your rant does not insult me. You are having your surgery today. I am sending you all my healing thoughts and hope it went perfectly. I hope you are completely pain free, not throwing up, and I hope you will be shocked and surprised and happy with the results.

We have so much in common. I will not list my things here. But listen to the wise and beautiful Meadow. It's hard to strike that balance, isn't it? Between living in your truth, ranting -- which can be so healthy -- and then learning to become another person who is peaceful and accepting and healing herself through love? I find myself ping-ponging back and forth between these two at times.

We are all with you, Mac! {{{{Mac}}}}

Lily55

Brettsie - thanks for those links, they just add to my regret of course but i allowed myself to be bullied in to radiotherapy..........

Mac how are you feeling and doing?

macb04

Hi all,

I had the fat grafting procedure yesterday. It started at 9 am at my plastic surgeons office operating room. They knocked me out and took fat( liposuction ) from the back side of both hips, about 300cc's. Then the centrifuged it down to about 150cc's of concentrated fat and about 4cc's of stem cells. That took about 90 minutes. They let me wake up, go to the bathroom and then they knocked me out again so Dr Z could put about 180cc's into my left breast. The whole thing took about 5 and a half hours laying on a very uncomfortable operating table. He said i have a really large amount of scar tissue that made it hard to do. I saw him again today and he said it looked good but that i should plan to have a tissue expander placed under the fat he built up/over my pectoral muscle for a few months and then I get an implant. I think about it, but i worry i will be really uncomfortable with an implant as my chest is always so tight from the radiation fibrosis. I worry i would hate the implant and then be stuck with it.

Only a truly desperate person (me ) would go through something so insanely difficult just to look halfway normal.

I hope i heal well with no infection this time and that it doesn't just melt away, get reabsorbed by my body. I won't know how things turn out for a week at least. I had hyperbaric oxygen on surgery day and will do more for the next ten days, as well as started levoquin the day before surgery, had IV vancomycin during surgery. I am getting IV vit C tomorrow after hyperbaric therapy. I am doing every single thing i can think of to have some success this time. I am sure all the prayers and good energy and happy thoughts will count for some good for me.

I will post an update every day or so. Thanks to you all. It helps not to feel so alone with this.

Meow13

MacB glad to hear the grafting went well. Do you have to wear that "garment"? At least it is winter I had mine in July. I received your pm and will contact you.

macb04

No don't need to wear the garment. I have had good healing where they have done the liposuction from the 4 other times i have done fat grafting.

I'll look for the PM from you Meow13.

Meadow

Mac thinking of you (((hugs))) (((Mac)))

macb04

hello to you all.

I am doing okay. I have a little bit of redness that started last night around where Dr Z injected the fat. It was a little bit more red last night, theni put a bunch of stuff on it and it looks better, close to normal. I put manuka honey and bactroban on it. I'm on levofloxacin since the day before surgery. I am also am trying Cryptolepis tincture . I seem to get staph when i get infections and this herbal medication is supposed to be effective for that and lots of other bacterial infections My left "breast" looks good, about a B cup. I just won't know for several more weeks what I will be left with. I rub it and think good hopeful thoughts.

Meow13

Thinking of you and hoping for good results by christmas.

Meadow

Mac I am so encouraged by your last post. I appreciate your sharing the anti infection treatments you are doing too. I am so hopeful for a great result for you this time, sounds very very good!

leggo

So happy to hear you're doing ok.

macb04

Hi again to all of you. I am healing well, but i am realizing that it is at it's at biggest in size now and it is still too small compared to my real right side.  I realize that I am going to have to have a tissue expander put under my new fat  and over my pectoral  muscle. I have a plastic  surgeon who has said he could do it this way. It makes me sad and worried. I didn't want the fake sh*t under my skin, i wanted it to just be me, but i have had too much bad luck, too much bad care. He said I have too much scar tissue in my breast. I have had lipo twice now to my belly, so a Diep is out of the question . I wish i could settle for how I look now, but I  still hate how it looks so  asymmetrical and like a man boob, without  a nipple  is is more a man mound. It definitely helps that the fat is there, don't get me wrong. It just isn't enough after 2 and a half years of being a butchered wreak.'  So at my followup visit I will tell Dr Z to plan for the TE surgery in January. It is not what what I want, but is the best of a bad situation .

I have two daughters, 10 and almost 12. I had hoped mygirls thought I was doing ok  as a mom despite everything. I know i shouldn't have asked this question, but i did. I asked my 10 year old, who was 7 when they first butchered  me. I asked her if i was as good a mom as the other moms. She said "i don't know, then she said that the other moms have it easy. I grew up with sh*tty parents who never hugged me or told me they loved me. I have always tried to be a good mom, but it is a huge grief that the c industry  has wreaked my relationships  with my girls. They will never remember  a time when i wasn't a cancer statistic.  I am not a mom anymore, i am a cancer mom. 30%  chance of life means my odds are not very good, i will never be able to  make it up to them for all the nights they were afraid listening to me cry and wail. I would try and stiffle the sound,but there is no privacy in our house, the walls are so thin. I would often go sit outside in my car, in the dark, in my coat when it was cold.

 I know I have to make my peace with this, but the grief and the guilt knaw at me and adds to my burden. I so much wanted to break the bad cycles in my family, i feel have failed at this, not completely, i 'don't hit them,i was hit all the time.i tell them i love them, that they are beautiful  and smart, every day.  I just pray this is enough  and that I live  long enough for them and me to have a day without  c, mamy many days without c. 

bobogirl

Dear Macb, my heart is aching. There is no way of knowing about the other people's mothers. All you can know is you love your girls. They feel your love. I know we do.

We know how you feel regarding being butchered. So many surgeries don't allow you to heal in a meaningful way, physically or otherwise. I am thinking of you and I am sending you hugs. You are enough. Don't forget that. XXXOOO

macb04

Thank you bobogirl, that helps a lot. I just feel a bit bummed out lately, i think I am physically very worn down which makes it harder not to be sad.

I had a very good day with my girls today. We wandered around the Pike Place Market for a couple of hours. The weather cooperated and we ate some fun foods, i let them have a couple of homemade donuts and hot apple cider. Now I am really tired, i am going to sit down and not move till bedtime.

Told my husband am going for the implant/Tissue expander. He says I will never be happy. Well that is largely true, but I can be happier if I finally get some symmetry. That is my goal which is reasonable enough.

leggo

Macb, you HAVE broken the cycle and it is enough...your girls couldn't ask for anything more. There's not a doubt in my mind you'll be around to watch them grow into caring, strong women.

sunny8

there are many new treatments coming up that are much less invasive and work with your immune system rather than against. Immunotherapy. You might want to look into in the future as it is developed further. You will definitely have more than 30% survival with the new treatments and be around for your girls to grow up.

I am thankful for people like you who had the honesty to voice your opinions here rather than all the sweet stuff. You and others on this board who were honest really helped a lot people to understand the depth and consequences of the treatment.

exbrnxgrl

Hi macb,

I've been reluctant to post on this thread, because, despite being stage IV, my tx experience has been very positive. But, I am a mother and was touched by your post about your dd's and wondering if you have been a good mom. The answer is a resounding yes! Your love and concern for your girls comes through loud and clear. Being dx'ed with bc presents us with many challenges, but I believe that that our children know we love them even as we face challenges that make us feel like less than ideal parents (and no one is perfect as a parent). Just keep loving your girls . That's what makes you a good mom.

Caryn

sunny8

I am so grateful to have read these boards before making my treatment decisions.

macb04

Thanks Caryn, thanks to you all. You are all so kind, and what you say helps, helps a lot. I feel like I have very little grace and calm left, just muddling through.

Thanks again, tired today, did too much yesterday.

Marie

bobogirl

Dear Macb,

It does not sound like you were 'muddling through' at the Pike Place Market -- it sounds like a wonderful day! Someday your girls will face great adversity and they will remember how strong you are -- I say 'are,' because you will be there to watch your strong girls handle adversity and keep going. It will be a great blessing for you to watch them do that! You are more graceful than you think.

p.s. None of us is in control of the outcomes of our treatment, but you deserve people in your corner that will be behind your sx decisions 100%. We are those people.

Lily55

macB i hear you loud and clear regarding recon......i wanted fat transfer only but have just had to agree with my plastic surgeon to stop as i have so much fibrosis after an infection post transfer a year ago.......did another two this year but not even got a one inch elevation......i was using BRAVA too......if i have FIVE more it might work but that is a four hour surgery every time, risk of infection each time, with three month gaps and cost if 6000 dollars each surgery, I cannot afford it........he thinks only a lat dorsi and expander will work now.......if i can get public health to do it, that will be a battle....I am too high risk of infection or complications for PS to chance it with me as bill could get too high......

I am so devastated I could not even post about it til now........