I decided to completely forego any further " C industry care" ?

macb04

Hi All,

WOW this has generated quite a fww responses to my original statement that I AM DONE WITH MAINSTREAM bc "treatment " Shanshan, I had a unilateral and while you know I completely regret it I am still going forward with reconstruction. Not the way I wanted, making the best of a bad situation. I had 5 fat grafting procedures with BRAVA. The ps who did it didn't do a good job,but he was the only one here in Seattle at that time. I don't think he got enough training in the technique from Dr Khouri at the Miami Breast Center to really know what he was doing. Lost most of the fat I had transferred, but had some, about an Aplus cup stick around. This was not enough to look normal compared to my other breast, so long story short I had a Tissue expander put in on April 9th OVER my pectoral with a new really talented flexible PS. Yes I said OVER my pectoral muscle. In the beginning of my nightmare when they chopped off my breast I had a Tissue expander put under my pectoral, excruciating, excruciating, excruciating!!! Not that way for all women, but quite a few are really miserable. Some women even have it taken out and wind up flat just because they can't stand it. There is a whole thread under reconstruction about that very thing.

I have had my tissue expander blown up from week 3 post Op. I started at 180cc saline, then my PS has put in 60cc's every week. NOW I HAVE Cleavage again. I am up to 420cc's saline right now. It doesn't hurt at all to fill the TE's this time, infinitely more comfortable, now that the Tissue expander is over my pectoral, no horrible painful stretching of my muscle, just skin stretching, which is mostly numb anyway. I had rad damage and had Hyperbaric Oxygen therapy 80 times to finally mostly heal the Radiation fibrosis they inflicted on me. That made it much dicier to do an implant, more problems after rad damage, but fat grafting makes the whole implant thing more doable, even with rads. There is an Italian study from 2012, "Fat grafting and Breast Reconstruction with Implant, Another option for irradiated breast cancer patients" Put that title into Google and you will find that info and a lot of other info like it.

Although, I will say again, once I finish reconstruction I AM DONE. I anticipate such joyous freedom from the horrifying, warped bc industry shackles. I can not wait!

edwards750

It's your life and your choice to make. You have def been to hell and back with your treatments. Thing is those of us who did not experience your horrific setbacks can make a case for the other side.

I have a friend whose sister chose to do nothing and by the time she did seek treatment it was too late. I for one would be interested in hearing from women who stopped treatments or elected not to have them at all. We all know doctors are not gods, although some think they are, and are def not infallible. I did my homework before I decided what to do and talked to several people who had been through it. I do have confidence in my BS and Oncologist. That's important.

I am not advocating going the conventional route is the only treatment of choice but I am saying not all treatments result in the pain and agony you have endured. I'm sorry you are going through it, however, it doesn't mean the choice we made was the wrong one either.

Diane

abigail48

I've had no diagnosis or conventional treatments. I've never had a pleasant experience with conventional doctors, or any other kind either actually, and as I'm now 78, I'll die of something soon anyway, & I chose to go out without the fear of procedures & what they might show, or the effects (akaside effects) of those procedures. In march 15th next year will be 5 years of the first sign that something had finally gone very wrong with the breast trouble I'd had for 50 years from taking birth control pills. The thing progresses I assume as these things do, & it's a hassle, but not as much of a hassle as waiting for phone calls, waiting in toxic medical offices, radiation burns (what a story!). & all the rest of it. I don;t do nothing of course, that woudn't work out, I eat fairly well, use essential oils, not cheap, suplies cost me about 20 dollars a week not including the oils, & cost me lots of time.

vespersparrow

yep, and methinks you're living longer & better doing the oils and diet than if you'd gone the chemo/rads etc way.

macb04

Hi All, Hi Diane,

Please don't take my sad lament of the "treatments" I received as an indictment against your personal situation and experience of care. I believe that each person has to do the best they can for themselves, and I do recognize that my experiences have been colored by the incompetent and sometimes thoughtlessly cruel care I received at SCCA.That there are some kind, competent and caring providers there I have no doubt, Dr Gadi is one of them. I just did not have any good luck in my providers in the slightest.

My point in saying what happened to me is to put out into the bc community an account of my experiences and how they made me feel. Yesterday was the 3 year anniversary of diagnosis, a very sad and miserable day despite my best efforts to fill my day with good or neutral activities. I still deeply regret all the bc "treatment " I still can barely look in the mirror. I always feel I am waiting for something bad to happen, that bad events are out of my control. I am so very damaged, while everyone else I know personally appears to be whole, two breasts, normal chance of life, a lot less pain than I have had.

Someone said to me that she had hope. I don't have hope, but I do have the ability to persevere, but I just do it my way.

Hugs to all.

blondiex46

Mac i am so sorry that u r going through all the stuff. You sound so angry..is the bc u got cancer in the first place. I think it is wonderful that u r sharing u r story, it will make people b more aware n i am so sorry that cancer picked u.. Unfortunately it does discriminate, drs, lawyers, teachers, toddlers, teenagers, babies get blessed with this stupid disease.  . 

I never once asked why me, even 1996, i said why not, you heard the statistics what is it now 1 in 6 or something like that. Hope, hope in what? damaged, what is damaged, you body yourt heart, what? It makes me so sad, i wish we lived closer cause a virtual big hug just doesn't suffice.

macb04

Thanks Blondiex46 for the virtual hug. Yes I am powefully angry. It is wrong, wrong, wrong that more and more of us get bc, at younger, and younger ages. That our country pretends early detection is useful. That early detection is of more importance than why is this happening. What is happening to our air, our food, our water that makes our bodies sick and deranged with abnormal cell growth in record numbers?Women like me with no family history, being butchered, fried by radiation and poisoned by toxic chemicals. It is wrong that the cancer industry makes $100 billion dollars per year off of our misery. That I can't even afford counseling, because my insurance deductible went up to $4500, and I owe my counselor $500. That as far as I can find, and all of you sister readers tell me if I am wrong, there is only one 24 hour/365 day per year Breast cancer crisis line in the good ole US of A. That if you have a crisis any other time other than 9am to 9pm, Monday to Friday, you had better suck it up, hold that thought until they can get back to you. So the cancer industry makes insane levels of profit and in reality gives nothing back. The CEO's of these awful companies should be ashamed of themselves.

abigail48

air? food? water? how about "medicines"

edwards750

Mac - I can't relate, but I do truly understand, why you feel the way you do. You had such an intolerable experience. BC is unfortunately the gift that keeps on giving. No one should be subjected to such incompetence. So sorry.

Diane

abigail48

should be a new topic: disgust alert. re the blood brain barrier: a realfriend from the long ago tibetan class days & now a fb friend posted a scientific information: the they have discovered a lymph gland attatched to a blood line from the brain into the nose

labelle

I can totally relate to the disgust you feel about the cancer industry and the insane profits it makes from our diagnosis. It often makes me wonder if mainstream medicine would embrace a BC cure or preventative if it were found, or would they try to bury it. There is a LOT of money riding on the cancer train and keeping it moving. We just all have to make the best choices we can-too bad all of them seem to suck and none offer any guarantees.

And yeah, that is fairly disgusting Abigail. LOL

juneping

labelle - totally agree w you!!

abigail48

just begun pondering it: makes you wonder about "allergies" at the very least

blondiex46

U r so welcome,  n i agree

Wait how about support groups in ur area r there none of them? 

Is there anything we can do to help u..

I am not as smart as u cause yhose things u said i have never thoughtf any of it. For me this is what happened this is what i did it work 4 14 years then it did not. Then it tried my patience, did all i could handle, now, i plan the rest of my life, whatever  that  mean.s.

macb04

So sorry Blondiex46 that things are where they are for you. You are so kind in the midst of your own trials. Wish I knew how not to be so angry so much of the time. Feels sometimes like if I didn't have the anger that I would just give up, just curl up and die. I just feel like an injustice, a huge monstrous crime has been commited against all of us cancer sufferers. I feel like not being angry means I accept that all this horrific suffering was just some CEO's bottom line being met for quarterly profits. I don't think I will ever stop being royally pissed about this. Maybe I will channel it more productively some time in the future, but not in my present.My present is full of barriers and expenses I can not afford to pay off.

blondiex46

Mach no worries from my end. I just worriy that the anger will b counter productive. U know stress is no good 4 cancer n that is causal of it. U b angry  as long as it serves u r purpose. I love that u r letting all those feelings out, i probably should b angry also...

farmladync

I recently had surgery for my stage 2 breast cancer. doctors are wanting me to take chemo and radiation. I am resisting for now. How long ago was you diagnosed ?

macb04

Hi farmladync, hi all. Am 3 years out,much of it pretty damn miserable. I have had 13 surgeries so far, 11 of them for reconstruction. Am doing well. Take a slew of helpful supplements, can give you a list if you like. Did the chemo,rads. Cut the chemo poison a month short and refused the boost with rads. As it was they fried the living crap out of me. I was burnt to a crisp, with bleeding sores all over my chest. I had to be on narcotics for the pain. Couldn't quite understand how I could have that much pain and still be numb. Anyway, I am surviving ok at the minute, enjoy life sometimes. Plan next surgery Aug 6th, 2015, surgery number 14 where my PS will exchange my TE for silicone implant. Always a bit worried about more surgery. Send me good luck, thoughts, prayers.

movingsoccermom

Had to stop Anastrozole due to side effects. Fingers crossed going forward!

macb04

Looked back at these posts. Finally done with surgery, just waiting to get nipple 3d tattoo this summer. Still get pretty pissed off about the whole disaster my life became. My husband is always saying that I am living in the past. He just doesn't seem to get it, I have all these problems from "treatment ". These problems exist every day, I live with them every day. I have pains that come up, in my back, or my arm or my hips. Every time that happens I get freaked out again. When that happens, I am living in my now and for what ever length of time until it resolves, I live in fear.

I am waiting to have peace of mind, no worries for days, months, years and hopefully decades at a time. At least nothing beyond the normal worries that bother those lucky people unaflicted by the bc industry.

Meow13

Where are you getting your 3d tatoo?

macb04

Hi Meow13, I am planning on going to Vinnie Myers in California or his shop back East. There are people here that do it, but not exclusively like him and his team do.

cb123

Macb04,

I hear Vinny's the man. I saw him being interviewed somewhere. Good choice. My only tat was at Ricky's in Alameda - that's where the sailors have gone for decades.

I'm not having nips but I am having an honorary tattoo and thought I'd get this one in Southern California, Pacific Beach. In honor of my time spent there.

I'm about to go read this thread from the start because I'm skipping chemo and going rogue. I'm so borderline stage 3 or 4. Final tests are thru the 18th of this month. I'm going to forego the stage 3 treatments and move forward with stage 4 recommendations plus radiation & total hysterectomy. Scary enough without chemo.

Let me thank you in advance for sharing here, I have so much to learn and I appreciate everyone's story.

cb

Meow13

I have had 2 failed tattoos on left, color completely gone. I think I am ready for Vinnie too.

California not too far away maybe this fall.

cb123

Wow Ladies, this thread got heated.

I did notice something right away, and that is to remember that we are on the internet and people may just say whatever they want. A person mentioned absolutely no traditional treatment but also mentioned elsewhere in this forum, "going through chemo with ease". I think that's why we all need to do our own research.

That IV Vitamin C looks promising and it's been around so long. I suppose I'm not surprised it's not been FDA approved for cancer as drug companies can't charge an arm and a leg for it.

My first diagnosis, 2014 lumpectomy (1.7cm tumor) post op biopsy showed 2/2 nodes containing "isolated" tumor cells. Tumor was gone, "isolated" was not chemo worthy to me and I met with a radiologist who did not convince me to have rads. My choice. The MO did not explain clearly that the hormone treatment was really ANTI-hormones. Being post menopausal, I was in no hurry to fill myself full of estrogen again. No chemo, no radiation, no hormones, just lumpectomy. My choice.

18 months later after DMX due to local recurrence (1.9mm tumor), I was surprised and frightened to find 20/27 positive nodes. BRCA positive. This is huge.

"Naturally," I feel my body was doing it's job and those lymph nodes were capturing those cancer cells and stopping them from going to other organs in my body. Those lymph nodes are gone now, what's to stop the cancer?

I flat out refuse to have chemo. The odds are far too high that it will do more harm than good.

Hormonal treatment is an option, now that I better understand it, as is having a prophylactic hysterectomy. At my age - it's what I think will work best for me.

Rads? I wish I'd had them at that "isolated" stage. But I did not and moving forward, I am considering them most favorably, though I'm frightened.

Knowing my life expectancy in 2014 was excellent and knowing it's now been significantly reduced because of my choices, gives doctors some guilt trip, finger pointing room. And so far 3 of the 5 docs I have, have done just that. 2 of those 3 have been replaced and I only have 1 more visit with my surgeon. No sense letting those 2 get paid for any treatments I decide to have. A$$holes.

I have 2 MRIs and a bone scan pending before I make any decisions. I had to fight the MO I fired to order those tests - he wanted to go right to chemo.

I don't have alternative healing methods available that will work as well on my current situation as the hormonal treatment. I hope I can stand it.

What have I learned? Do your own homework and don't take anyone's word for it. Then do the best you can with what you have.

cb

cb123

Here's the tattoo I'm considering. Not full chest, just upper arm. On the non-cancerous side.

exbrnxgrl

cb123,

I generally don't follow this thread, but wanted to mention two things.

Yes, lymph nodes "catch" cancer but if left in place, they will circulate throughout your lymphatic system and will eventually take up residence in bones or organs. The nodes do not hold the cancer in a locked jail cell. Cancer cells also circulate through the blood stream, thereby creating another pathway for metastasis.

Medical nipple tattooing seems to yield less desirable results. I have heard many complain of color loss. I have a an ornamental tattoo on my forearm and it looks as lovely as when it was done. Different types of ink? Take care.

Meow13

cb123, your MO failed in not explaining the AI drugs would shut down estrogen so cancer cells would be starved out. The side effects to me were cumulative and bearable but not fun. I think I've had more than I'm willing to stand at this point.

I'm going to get vinnie tattoo after summer months.

cb123

Thanks xbrnxgrl,

Intellectually I know that but I miss them. I think I'm going to miss the nodes and the reproductive organs far more than I miss the breasts. I keep thinking I might need them again for something. The breasts were just sort of an unnecessary appendage that got in the way, I might want those nodes.

Meow,

The video I saw showed the woman asking for a certain color and Vinny was guiding her to a more flattering shade, like a hair colorist might do. He was mixing the colors in front of her and pointing out how the color would change after it healed. They really are pros at this, it's not like going down to local tat shop.

Getting a Vinny

cb

macb04

Hi cb123, nice to meet you. Glad you have come join in to my thread. Don't beat yourself up for not having chosen treatments that seemed wrong to you in 2014. All of us here know people who did the maximum, "treatment wise" and were still unlucky enough to progress onward to a higher stage, or to have, sadly, died. The point of this thread is to express my feelings about "treatment ". That I consider them to be horrific and barbaric, is my own point of view, which is fine. We each choose what seems to be the best thing for ourselves, at the time. I am glad that usually there is a beautiful level of kindness, support and information sharing here, I hope it will always be so. Glad cb123, that you kicked those blame game md fools to the curb. I read somewhere else, not bc, anither kind, and the guy was talking about doctors and said, " They work for me, not the other way around" I LOVE THAT! Made me laugh when I read that.