Not Buying Into It

Pompeed · October 2010

Lumpectomy didn't get it all. Now I'm told I need more surgery and the push is for rads and chemo and then pills. But all of the MDs disagree. Two oncologists, two surgeons, two internists and they all disagree on what has to be done and what ought to be done.

I just started reading the notes on this Board an hour ago. And from what I've read so far and what I know from the last four months of spending my life with white coated folks, my future is going to be filled with more pain and misery and weight gain and all of the horrors and permanent damage of drugs and poisons and radiation. And that's after some more surgery. My life will become nothing but my disease and that's what the focus of every day will be. That's what most of the last four months have been: a life without much more in it than cancer.

"Cure" is a stupid word and all of that nonsense we have been fed over the years about living a cancer preventive life was a complete lie. With 70% of the population going to get some kind of cancer at some point in their lives regardless of genetics or gender or lifestyle or anything else, cancer prevention is a complete hoax.

Pointless. All pointless to spend so much of my life's minutes which are left with the white coats who are always willing to sacrifice the quality of life for the quanitity of it. That's what the medical community sells: "take this and do that and get more of this and have that done and this done." More, more, more. Always more. More drugs, more surgery, more needles, more pain, more of everything that's horrible and life altering.

Meanwhile time goes by so one's life minutes go by and age works more and more against anything like a "cure." Because there is no cure and we are fooling ourselves if we think that's what we are buying by gritting our teeth and tolerating the misery of treatment.

There's treatment and from what I've read in the last hour or so, after the treatment there's all of the permanent side effects of the treatment. Some of which are very likely worse than the disease. Pointless. Just pointless for me to get sucked into in procedures which are going to be worse for me than the disease but are being "sold" to me as "cures." False hope -- which is what all of that "cure" nonsense is, really -- is a very dangerous thing. And trying to imagine what I'm going to find more acceptable in comparison to something else which sounds equally horrible with respect to experiences I've never had before is absurd when one stops to think about it. Will I be happier without a breast and a flat chest or happier without a breast but with six months or more of reconstruction and everything which goes with that? Who the hell could know? And after procedures which turned out to be nearly hell on earth, suspicion only gets more ramped up when there's a discussion of doing this versus doing that. None of the people who are talking to me about what they think I should let them do to me and what they think I should consent to have ever been through it themselves. They are wonderful medical technicians in what they do to other people but they speak from a standpoint of having no personal experience of their own recommendations and subjective assessments. How does any male surgeon know what's it's like to be a female and live without a breast or breasts as the case may be? What can that surgeon possibily know about dealing with the revulsion of a husband or a lover?

After reading what I just read on this thread about the experience of others, I am willing to take the time I have to enjoy what I can enjoy and let it go after that. We are all going to tap out at some point and I've already watched my father die from cancer and too much medical intervention which made a lot of what was left of his life miserable.

I wish all well.

Mantra · October 2010

I do remember feeling exactly like you do. I told the Dr. from day one . .. I didn't want to fight a losing battle and I wouldn't sacrifice quality of life for quantity of life. A woman on another board who was 23 years cancer free helped me to deal with everything I was feeling. I do hope someone who has been through chemo etc comes along and can give you insight into all of this. I'm not the right person because I haven't been through it but wanted to just let you know that someone is listening.

Celtic_Spirit · October 2010

I don't know what your stage is, but I'm a stage III. I went through auxillary node disection, bilateral mastectomy, surgery to install a chemo port, six rounds of TAC chemo, six weeks of radiation, twice yearly zometa infusions for two years, an oophorectomy, and so far I've been on tamoxifen for two years. I have mild lymphedema in my right arm. It might sound like my life really sucks, but that couldn't be further from the truth. Sure, the first year, when most of my surgeries and treatment took place, was rougher than a Saturday night in a Mississippi jail. But I can honestly tell you that my quality of life now is terrific. What kept me going was the desire, the all-consuming desire, to be exactly where I am today. Again, I don't know what your circumstances are, but I can tell you that even very tough battles are possible and worthwhile to fight.

PiscesMoon · October 2010

feeling overwhelmed with a diagnosis and the tests, doctors, more tests, more doctors and oh-my-god-where-does-it-all-end spiral is understandable and, i think, quite normal. reading and educating yourself on your cancer is a good thing but sometimes you can become overloaded and you just need some time to step back and absorb all of the information.

you didn't give any specifics as to what your dx is so i don't know if you'll be advised to take chemo, rads, or hormonal treatment. i can only tell you about my own experience. i was dx'd in Nov '09 with DCIS and IDC. i did a lot of testing, colonoscopy, mri's, and cat scans. i had a mastectomy (left breast) with no reconstruction in february 2010 (was scheduled for january but got sick and surgery was delayed). started chemo in march (TCH). finished chemo in july and am still taking herceptin every three weeks until next year. i am still on the fence about taking hormonal therapy. i will discuss this at length with my oncologist.

surgery and treatment were all very doable, not a walk in the park at all but i made it through. i looked at my options and did what i had to do, just like i'm sure you will. i couldn't really look at the big picture, ie, the cure, while i was doing treatment. i had to simply get up in the morning, do what i had to do, and make it through the day. i knew there was a light at the end of the tunnel and it was, for once, not a train coming down the track at me. ;-)

i guess what i'm trying to say, in my own long-winded way, is that early on it's overwhelming. it's a tightrope balancing act of finding out information and being able to process it and use it to your advantage versus becoming smothered and overwhelmed and simply not dealing with it because it's too much. to use the old cliche - take it one day at a time. there are many, many women here who can help and lend an ear, a little advice and a lot of love and humor.

we are here for you.

~M

badger · October 2010

Edited to redact a post with personal information.

lago · October 2010

I can't stand dealing with the medical community either. Up till my diagnosis I was lucky not to have to deal with the pill pushers that often. As my Chinese hair dresser (that I won't be seeing for a while) say about Western medicine "they give you a pill for a headache and then your dick falls off"… but he still will see a Western doctor and take drugs when needed.

I had my BMX with level 1 nodes one side & sentinel node dissection on the other almost 8 weeks ago. I had my port placed almost 3 weeks ago followed by my 1st chemo treatment the next day. My hair is currently falling out.

It's really not so bad. The chemo part is temporary (6 rounds for 3.5 months). The hair loss will take the longest to "get back to normal" but we aren't talking about years. I'm not sure what side effects you think are permanent except for menopause which at our age was going to happen in a few years anyway. So far other than missing my period I have had no other symptoms related to menopause. It's the unknown that's the scary part.

You should put a list together of all the side effects that you are worried about becoming permanent and ask your doctors. If they give you BS answers then find new ones. I would also ask for the reasons they feel you should have xyz treatment and why. Pick which makes the most sense to you or go for that 3rd opinion.

You will get through this. So this hasn't been even 1/3 as bad as I thought. My worst experience so far is with "Nurse Ratched". On Tuesday I am letting her know I will not deal with her… someone else will have to take my case or I'm moving to another treatment center.

BarbaraA · October 2010

Pompeed I can give you my personal experience. I had a lumpectomy with 4 nodes removed. After I was told the nodes were negative. One came back with a micromet and the margins were not clear. My choices were mast or re-excision. I am a D cup on a small frame so I decided on re-excision. I told the surgeon no more nodes.Margins were fine. Had the oncotype test and came in 17 so no chemo.

I did the Canadian protocol rads 16 tx and fisnished 7/9. From dx to end was 2 months and one week. I also opted for no Arimidex and am working with a nutriotional biochemist to regulate my hormone metabolization.

Had my 6 mo mammo - all clear. Last estrogen test - undetectable.

Beesie · October 2010

We all have to make the treatment decisions that are right for us. Some of us choose to "throw everything at it" while others weigh the risks and benefits and choose to undergo only some of the treatments available/recommended. Some women pass on certain treatments because of concerns about serious and/or permanent side effects; others make their choices for quality of life reasons. And certainly there are some women who are Stage IV who choose to forgo any further treatments.

You have to do what's right for you. But please do your research and know your facts before you make your decisions. Some of your current understanding about cancer and cancer treatments is terribly wrong.

70% of the population is going to get some kind of cancer at some point in their lives: Actually, 1 in every 2 men (i.e. 50%) and one in every 3 women (i.e. 33%) in Western nations will get cancer at some point during their lives. So that's about 42% of the population, not 70% of the population.

Cancer prevention is a complete hoax: Well, it depends on the type of cancer. Most cases of lung cancer can be avoided if people don't smoke; same thing with mouth and throat cancers. Many cases of skin cancer can be avoided if people stay out of the sun. Most cases of colon cancer can be avoided if screening is done and pre-cancerous polyps are removed. As for breast cancer, there are mixed opinions on this. Some believe that prevention can significantly reduce the number of cases of breast cancer while others believe that those who get BC are most likely genetically pre-disposed and there may be little we can do about it. I tend to fall in the second camp, so I agree with you on this one, but the fact is that nobody really knows.

"Cure" is a stupid word: Yes and No. Cancer is not a single disease. Neither is breast cancer. There are many types of breast cancer and many different causes. As a result, finding a single "cure" will be difficult, if not impossible. However most people who get cancer, and most women who get breast cancer, are in fact "cured". While there is no cure for the disease as a whole, the treatments that are currently available do cure most individuals who get the disease. In 2004 (which is the last year for which data is available), cancer was the cause of only approx. 15% of deaths in developed/high-income countries around the world. So although 42% of the population will get cancer (at least one time; some will get more than one cancer), only 15% of the population is dying from cancer. Most people who get cancer survive. As for breast cancer, long term survival rates are now in the range of 70%+.

All of the horrors and permanent damage of drugs and poisons and radiation: Most treatments are not pleasant. There are quality of life side effects. And most treatments also come with some serious risks. But the percentage of women who suffer these serious problems and/or permanent damage is low. For most treatments, we're talking only about 1% - 3%. So don't assume that everyone who undergoes radiation and everyone who undergoes chemo has serious and/or permanent side effects. That's very far from the truth.

So, with those facts, now consider your situation. You have said nothing about your diagnosis or your age. If you are Stage IV and therefore know that your individual case of cancer cannot be cured, you might decide that you prefer quality of life to length of life. But also consider that after their treatments, many Stage IV women live for many many years before the disease shows up again. This gives them an opportunity to see their children go through different stages of their lives or perhaps gives them the chance to meet new grandchildren. A lot can happen in a few years. New treatments might even become available that allow you to extend your life even more. And if you are not Stage IV, then you have a disease that could possibly be cured. Yes you might have to undergo a year or so of treatments that impact your quality of life (possibly only a bit, possibly a lot) but then you might have a full cancer-free life ahead of you, with no side effects or permanent damage. Of course there are no guarantees, and the likelihood that this will happen for you depends on your diagnosis, but the fact is that most women diagnosed breast cancer do face a future without breast cancer and without permanent or life-changing damage.

I understand that after 4 difficult months, seeing that you still have so much ahead of you, including more surgery, seems overwhelming. I appreciate that not getting a clear recommendation from your doctors is frustrating. You've hit the wall and you've had enough. I get it. Most of us hit the wall at some point. We want this all to go away. We want to curl up under the blankets and pretend that this never happened. Those are normal feelings. I'm not going to tell you to not feel the way you do because it's so understandable that you feel this way. Give yourself some time to work through these feelings. Think realistically about what's ahead, both over the short term while you are going through treatment, and then over the long term, once this is all behind you. Get all the facts. Understand your prognosis. Understand the risks and benefits of each treatment and what it will mean to you personally, given your diagnosis. Then make the decisions that you can live with.

PlantLover · October 2010

Pompeed,

There's a reason my 1st post on this site was October 9th, 2010 when my "joined date" was November 2009 - just after my diagnosis.

I joined and started reading about everyone's experiences - some not so bad and some very traumatic.

No offense to anyone here, but it freaked me out to the point that I knew I wasn't ready to read about the good, the bad, and the ugly possibilities of what I was about to face. So, I stopped coming here.

I put my trust in my treatment team and was fortunate to have some very good friends, one in particular, that had been through BC treatment years ago. She recommended her BC surgeon and her chemo oncologist to me. She even went with my husband and I for our first consultaion with my BC surgeon. My sister was my "research girl" & still is. I just asked her if she will help me research what the pros & cons are on the different hormonal treatments I will need to consider after I finish this round of chemo. I tried looking at different threads about that here and was honestly getting even more confused.

There is a lot of information on this site and a lot of supportive people. However, maybe you are like I was at the beginning, overwhelmed and a bit freaked out when you read some of the difficult things folks have been through. I'd think ... Oh my, I can't deal with all of that! I'm sure some of the posts I have made since I started posting might freak some out too.

So, I just had to find the treatment team I felt comfortable with and trust them. From what you've said I'm not sure you've found that yet. Once I had that, I just put my head down, sucked it up and told myself, EVERYDAY, you can do this and didn't look back.

It's entirely possible that when you go thorugh your treatments you might not experience any or even many of the problems others have who had the exact same plan. We are all different.

I'm not ready to say - "okay, this was all pointless" because I know it has not been. Even though I wasn't diagnosed until I was Stage III with lymph node involvement, I know my treatment team and I have been seriously kicking some "cancer butt". I do know I'm ready to get back the quality of life I had before treatments began, thus the reason I'm ending this round of chemo early with the support of my oncologist.

Maybe, like me, you just need to find the treatment team you trust and stop reading about people's experiences that may not even be what you go thorugh.

I found I was stronger than I ever imagined I could be. I bet you'll find the same thing.

Hang in there!!!!

ruthbru · October 2010

I came to the BCO home page and got as much factual information as I could to bring to my doctors. I checked out the discussion threads too, but also found that I gravitated toward the really sad ones and the ones where people were having terrible SEs etc. So I did what Bec did. I got a good medical team, asked lots of questions, and once I felt comfortable with the treatment plan, that what we were doing was my best shot to beat this diease.....then I shut down the computer and did what I had to do. I only came here again this last Christmas, about two years out. Now, I find it a great place of support but am still careful to stay away from negative threads; they can STILL bring me down. Best of Luck! Ruth

hymil · October 2010

Don't be too hard on the white-coats, and don't make assumptions. Would you know if they had had cancer last year, were walking round with only one ball or a stoma, or been told they could never have children? A medical degree is no protection from the random cancers and other life-limiting illnesses that hit even the non-smoking non-obese well-exercised vegans.... It must be really tough to get back to work and face patients again after that.

Iago, I'm still chuckling to myself about your chinese hairdresser's comment!

1Athena1 · October 2010

Pompeed:

I see your pain and send you an enormous virtual hug!!!

LuvRVing · October 2010

Pompeed,

I hear what you are saying. I had to do a boatload of research to come to decisions about my own treatment. And they were MY informed decisions, not necessarily the ones recommended by certain members of my medical team. I had to do what felt right for me. I was diagnosed in mid-June, had surgery and finished radiation on August 4th. I did agree to take Femara, which I seem to be tolerating without any side effects so far. So I take a pill, just like people with high cholesterol, high blood pressure, or whatever other "conditions" out there that require some medical intervention.

As far as I am concerned, I am "moving on" with my life. Yes, I have follow up appointments that I will deal with. But it's not any different than if you have some other health issue that requires attention (I happen to also be diabetic). I am not going to dwell on the fact that I had breast cancer. Maybe it will come back, maybe it won't. The odds are in my favor and I am going with the idea that I will be just fine. I refuse to let this consume the rest of my life!

It might help you to read my blog www.mch-breastcancer.blogspot.com

I've got a lot of living left to do!!!

Michelle

Pompeed · October 2010

I just read the replies and the suggestion of getting a port. More surgery: one to put it in and another to take it out. It's what I said before: it's going to be never ending.

My dx is certainly not as serious as others I have read. It was caught relatively early and the "worst" kind is all out in the first surgery. The DCIS is left on three of five margins. One sentinal node with a few "isolated" cells in it. As one MD has said: "If you had to get breast cancer, you got the best kind." Well, that's nice. Lucky me. As with everything else in life, things could be worse. With cancer, it seems like they are guaranteed to get worse. It's only a matter of time and causes: worse as the disease progresses or worse from the treatment. Or both. It's a gambler's paradise.

I did a tour through the medical establishment about ten years ago. Life threatening. As in dead on a table in an ER, revived, dead again, revived, a week's tour of the ICU, a week's tour of the hospital and then about five years of complete misery fighting diseases which cannot be cured. Only managed. One entire year with a Hickman in my chest -- replaced twice when they failed -- and then a raging septicemia from number three. Two years of PT four times a week. It's been half hell just managing the over sensitivities and reactions to anything anyone does to me which are the "left overs" from that tour through hell. A flu shot and I'm in bed for a week. Venipuncture for blood test and my whole arm goes black and blue.

The surgery in August was bad enough and that's only skin and breast tissue and breast fat. That's not what's going to happen with a reconstruction and tearing up muscle and tendons and all of that if I go that route. That tour will be worse. A lot worse.

The constant pain in my side and back from the node dissection is a result no one even suggested would be a likely outcome. No more of that: the procedure the day before with the injections of the radioactive tracer for that deal was horrible. If I had known in advance what that was going to be like, I would never had agreed to a dissection. And I would never have agreed to the guided needle procedure if I had known what the deal of putting the needles in while squished in a mammogram plate was going to be like.

Just about as bad as the MRI biopsy: let's lie on the hardest table we can find with a huge piece of material on the sternum, compress the boobie between some plates as tight as the plates can go and then stick some needes in it while demanding that the patient not move at all. "We can't inject any more xylocaine to keep you comfortable. We're at the limit now." That was a wonderful afternoon of radiology! If any man in American had to go through any of that stuff on their special parts, better ways would have been found by now!

So I can just imagine what is going to happen with radiation and chemo and especially steriods: it will be another tour though hell like the years of earlier misery. That whole deal cost about three quarters of a million bucks and most of a decade of my life. And this year's fun and games with the white coats, just since May, is already approaching 50 grand and I've lost count of the hours at appointments and consultations and travel all over the map.

Not worth another penny or another hour of misery for procedures which I'm told are going to "save my life" so I can be a cancer survivor. That's BS too. Because there's no way to know that I won't have a recurrence on the same side or get it on the other side: I could walk through the valley of misery for another six months and have BC show up on the other side in next year's mammogram. It's all a crap shoot. For all of us.

As for cancer prevention: no one could have done cancer prevention better than I did and I still got it. Yes, I agree: there are plenty of activities which put one at significantly higher risk like smoking and environmental exposures. But I wasn't doing that stuff. Ever. We ought to quit kidding ourselves that we can dodge the cancer bullet by living a decent lifestyle, eating our blueberries, drinking our Pom Wonderful and having Irish oatmeal for breakfast. It just ain't so. The best the medical community can do right now is early detection and screening. That's not prevention by a long mile. That's not even the beginning of prevention.

I think the best advice I've read here so far: there is probably a lot of good advice to be found on this site but, as someone said, make the best choice possible. The best choice possible is to accept the inevitable: my grandmother lived to 98, another to 94 and my mother, who got breast cancer at the age of 80, lived till 89. I'm two decades younger than she was when she got it and my life is going to be shorter than that of two earlier generations. That's just the way the cookie is going to crumble.

It's time to stop reading here, put affairs in order, get busier in the time that's left and skip wasting any part of it doing things that may get me another ten years but at what cost? Lymphadema? Neuropathy? More time getting this piece of myself carved up and that piece of myself carved up and looking carved up? More drugs and more drugs and then more drugs in multiples to counteract the side effects of first two. Lots of time spent at MD offices and operating rooms and runs to the pharmacy and dependency on others and pain. Constant pain. And that doesn't even begin to mention the pressure on the bank balance while the income dwindles to a pittance because all of the time spent playing in the world of needles and drips and machinery and anesthesia and praying to porcellain thrones cuts a mighty big chunk out of the time one needs to make a living.

As for depression: I think anyone who gets a cancer diagnosis and then claims not to have a mental depression of some sort is, well, maybe less than candid,

Good wishes to all!

lukejessesmom · October 2010

Celebrating 2 yr. being stage 4 @ diagnosis in 10/08. My quality of life is good. Yes, its on-going treatments, shots & pills, but I will do WHATEVER I have to do to watch my boys grow up. Their Dad died unexpectely 6 mo. prior to my diagnosis. I respect your opinion but don't be discouraged. It's not been that bad for me.

1Athena1 · October 2010

Pompeed:

I hesitated to say this for fear of stating the obvious, and I also fear coming across as though I am negating your feelings or views, but it might be worth pointing out that you do sound depressed.

I did not even come to BCO until I had made my own decisions. I consulted no support groups and stuck tightly to my doctors and published research and soul searching to make the very difficult decisions I came to.

Some people like to consult with others on these things. That is not my style and I wager it isn't yours either. Furthermore, no one owns the truth when it comes to cancer treatment and doctors. My concern is that your views are uniformly dim - if that is how they are on a good day, then, fine, go ahead as you are, but if you have had different opinions of doctors at other times with other illnesses, then take a breath.

I frankly wouldn't want to be treated by doctors who have gone through what I have. They might tell me to give up - lol!

It is important that whatever decision you make be arrived at in as cool-minded a manner as possible. See how you feel about treatment when you are feeling better emotionally - even if the "better" feeling only lasts for five minutes. Do a "test run" of your treatment decisions in both good moments and bad before carrying them out. My final decision on chemo came after I "asked" my long departed father. "His" answer came to me in a flash, and I haven't looked back since.

momand2kids · October 2010

Pompeed

You have certainly had some experiences that would challenge the most hardy among us- and your reluctance to do any more seems to make a great deal of sense.

I think you do get to make the decisions--- there are people who simply have their lumps removed and nothing else.... they make that decision based on their own research, experience and understanding of what is right for them..... If I was comfortable with just having my lumpectomy and nothing more, well, I totally would have done that...... I think it is, in the end, all about what you can live with.....for me, it was what would let me sleep at night without worrying about it.

You should get to decide what you want to do-_I think everyone here would support that.

However, please know that there are many of us who did go through treatment with very few side effects (I was one of them)... it is not a foregone conclusion that people suffer horrible side effects (although certainly there are people who do indeed). There are pros and cons to every decision in life, and this is no different.

I can only tell you, now, two years out, that I am extremely healthy and feeling great--- and I sleep well at night because I feel I made the best decisions for me.... and you get to do that too.....

This is such an emotional time--- I agree with the poster who suggests that you make decisions based on facts and your own opinions and your docs if you respect them, and not emotion.

good luck

1Athena1 · October 2010

Pompeed: I think our posts crossed - so sorry to read about your previous experiences. But the past is not destiny.

PiscesMoon · October 2010

i can understand why you may think the way you do. you've watched your father die or cancer and then you went through some sort of medical hell 10 years ago and have suffered from that ever since. you do sound depressed in your way of explaining things, however it's difficult to tell from just what someone has typed. you could be a realist and just be embracing 'it is what it is'. from your posting i'm guessing you are in your 60's - age has a way of determining your treatment decisions. if you did treatment or more surgery would you get lymphodema or neuropathy? maybe. maybe not. would you have a recurrence? maybe. maybe not. you are right, no one has the answers. everyone has to make the decision that is best for themselves.

personally i wouldn't advise you to not follow up on your surgery but i can understand why you may not. i might get slammed for thinking this way but it's not for me to tell anyone what they should or should not do. i would hope, though, that any final decision that you make will be based on knowledge gleaned from a lot of question and answer sessions and not on the fear that maybe, just maybe, you will get the worst outcomes when it comes to treatment and disease free survival.

all the best.

~M

Mazy1959 · October 2010

I was diagnosed with stage 2B ILC in 2003. I did chemo, rads and Tamox for a short time. Diagnosed with bone mets 3 yr and 9 months later.I take Zometa infusions (bone strengthener) and Aromasin which has worked well for me. I have a good quality of life and breast cancer certainly isnt all that my life is about.Chemo was not easy but it was for only 12 weeks...but yes it felt like it was a year. Radiation was inconvenient but otherwise I had no problems with it. I have pain from my mets and I take pain meds for it and it works pretty good.

My life isnt the same but its still my life. If I had rolled over and died I wouldve never seen my grandkids, been at my sons wedding, etc etc.

Treatment or no treatment is your decision but I dont understand how someone who has been thru so much...wouldnt give it a try. Just because you have been thru alot of other health issues shouldnt be a reason in itself to throw in the towel. I hope you at least consult a counselor before making up your mind. Mazy

kcshreve · October 2010

Pompeed - I too had many years of aggravating medical/health experiences which made me very cynical of the medical profession, in general. When i got my BC dx, that really scared me because I had learned not to trust any of them, for good reasons. But then I didn't know what to do or who to believe. I had DCIS, with no microinvasions, so it was clear what I needed to research. for me, the research calmed my overwhelming fears. As I researched my options, I eventually was able to find my balance and determine what was right for me. It does not happen overnight. Finding your balance takes a bit of time, but is also hard work. Once you find the option(s) which match you, you'll begin to settle into your decision. Every doctor I spoke with had conflicting info for me, too. Very frustrating. I found this site to be helpful, as well as the reconstruction site, since that was a big decision - going flat, going recon, what type of recon, etc. Each step took time and focus. I'm glad I could access enough info to settle my issues. I hope the same for you.

debbie6122 · October 2010

I may be wrong but i think you wouldnt of come here to tell us what you werent going to do unless you are looking for support and help, I hope you have read carefully what these wonderful ladies have said to you, i know you have been thru a lot, and i can see how you are angry and scared its a lot to process i know, i had vulva cancer, lung cancer, and breast cancer, ive went thru numerous surgeries in my life and believe me i didnt want to have a mx or chemo, but i wanted to do what ever i had to do to save my life, even if i got a recurrance i wouldnt regret my decision one bit- I hope that you will continue to come and post here and let us know how you are doing- even if you decide not to do anything else, we all understand what you are going thru and if you just want to vent we are here to listen and lend a hug!! Be well, im praying for you

Pompeed · October 2010

Debbie:

With the greatest respect, there is no help.

There are individual experiences as patients. Which are shared. Openly and generously. Commendable for sure. And there are ears listening and eyes reading and compassionate warmth.

But there is no help. Everyone is slogging through this mess alone.

apple · October 2010

well.

i am stage IV.. i have been thru radiation chemo, drugs, surgery.. i feel fantastic and live as if i were normal... no one would ever know. i haven't gained any weight.

we can choose how we want to continue living.

alone? only if you want to be. I found these boards excellent support.

Wonderland · October 2010

Pompeed,

Life is worth it. Get into counseling.

Wonderland

Hattie · October 2010

sometime during my slog thru cancer treatment, i realized i am mortal, and somehow that freed me to quit fighting my fears about it, and to accept it and live. not sure how i got to that state, but i did. i didn't have other health issues as pompeed did. i have lived some very fantastic moments since finishing treatment (well, still doing tamoxifen) that made treatment totally worth it. at some point, the body will give out, but chemo, surgery, some extra pounds, new hair and a funky boob were totally worth new friendships, publications and artwork, kids growing up, travel, and some more anniversaries with my significant other.

about the white coats: they are, fortunately or not, just human (i have often thought, and maybe said, hey i thought you were god, why aren't you? and realized that they have the info and perspective they have, and i still have to make decisions for myself). some i respect tremendously, and some i am happy to have dumped.

one of my favorite docs said, if you get a lot of different opinions about what to do, then all choices are good ones. like yogi berra, if you get to a fork in the road, take it. i did, and i don't look back.

breast cancer isn't really curable,and we only can say it is if we die of something else. however, it can be treated and managed. right up until the last threshold.

take care all,

--hattie

Hattie · October 2010

i too had the lump with not good margins and lots of differing md opinions about what to do. i went for more surgery but keeping the good tissue, chemo, rads, tamox. totally not fun, totally do-able, for me totally worth it even if it only gave me the five years i've had since. no pain post one year, no fatigue post one year, some struggles with emotions and getting on with things but also life presents challenges with or without or including or excluding cancer.

take care,

--hattie

ruthbru · October 2010

A good plaque I just came across, and something I truly believe:

It is what it is...but it will become what you make it.

PlantLover · October 2010

I guess I'm just really confused why you started this thread at all.

Did you feel what was best for you was to sign up on a breast cancer org website and post that all treatments are pointless? In the end, we are all just going to die anyway? Did you feel you needed to enlighten us on how pointless it is to try to fight this disease?

Did you want to make sure that we all know that, in your opinion, all the treatments some of us have been going through or that you might have to go through if you choose that path come with "permanent side effects of the treatment. Some of which are very likely worse than the disease. Pointless."

You said ... "Not worth another penny or another hour of misery for procedures which I'm told are going to "save my life" so I can be a cancer survivor. That's BS too. Because there's no way to know that I won't have a recurrence on the same side or get it on the other side: I could walk through the valley of misery for another six months and have BC show up on the other side in next year's mammogram. It's all a crap shoot. For all of us."

Then you went on to say "It's time to stop reading here, put affairs in order, get busier in the time that's left and skip wasting any part of it doing things that may get me another ten years but at what cost? Lymphadema? Neuropathy? More time getting this piece of myself carved up and that piece of myself carved up and looking carved up? More drugs and more drugs and then more drugs in multiples to counteract the side effects of first two. Lots of time spent at MD offices and operating rooms and runs to the pharmacy and dependency on others and pain. Constant pain. And that doesn't even begin to mention the pressure on the bank balance while the income dwindles to a pittance because all of the time spent playing in the world of needles and drips and machinery and anesthesia and praying to porcellain thrones cuts a mighty big chunk out of the time one needs to make a living."

Fine. Do what is the right thing for you.

I really do wish you the best; however, personally, I wish you'd quit making it sound like those of us that are "fighting the fight" are simply deluding ourselves and wasting our time.

On a final note, you said "But there is no help. Everyone is slogging through this mess alone." Nothing could be further from the truth for me.

Mazy1959 · October 2010

I am not sloggin...I am a daughter, sister, wife, mother, grandma, aunt, cousin and friend who wanted and still wants to live to enjoy whatever there is in my future. One day this breast cancer may take my life but that day could be decades from now. I think you are depressed and maybe angered because you dont want to deal with health issues again. Its always your choice if you accept treatment or not but I agree with Bec.....if you tuly felt that way...did you only post here to see if everyone who gets breast cancer just waits to die??? I can tell you that my family and friends are ever so grateful that I am alive and living well. I strongly urge you to see a counselor at your cancer center so that you can at least make an educated decision to make no effort to live.

konakat · October 2010

I'd rather have a mangled boob, neuropathy, lymphodema, nausea, pain, fatigue, baldness, fatness, all those fun things than being dead. Pointless, absolutely not, IMO. The point is, is that I'm still alive. Sure, I've had some very dark times, but overall I'm glad I've had all these treatments and am still able to enjoy life. There are women on the Stage IV board that are having a great time travelling, rumbling on their motorcycles, working full or part time, taking disability to enjoy their family, taking classes, or just taking it easy.

Please take time to make your decisions. And, any decision is not written in stone, you can always start or stop treatment at any time.

Not Buying Into It

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