WHY would I put myself through this?

TheLadyGrey

I just read through the side effects of God only knows what combinations of poisons on the Triple Negative thread, right up to oozing and smelly finger nails and I simply cannot fathom why I would even consider maybe thinking about debating doing the chemo/herceptin regimes that results in that hundred plus page miserly log which includes possible permanent heart damage and eye problems.  

I did just get my Final-ish path report today which describes a triple positive cancer that is not laid back, looking to drink a beer and smoke a joint on the beach while watching the sunset and listening to Bruce.  This one seems more interested in annexing a contiguous hostile territory.

Still and all, there are quality of life issues here I CANNOT get my head around.  My older kids are (1) grown and (2) great, and my youngest will be out off to college in a little over two years, one year of which I gather I can spend either enjoying him or suffering terrible joint pain with no hair with stinky and/or non-existent toe and fingernails worrying about being blind.  

For me, that is an absolute no brainer -- whatever level of comfort I might get is totally not worth the price of admission.  

Did ANY of you all struggle with whether to put yourselves through this loathesome treatment?  

Maybe I need to stay off the forum -- cuz right now treatment is a big old non-starter. 

hrf

LadyGrey, I understand your fear - we all go through that. But based on your dx, you have DCIS which is usually surgery and sometimes rads. I'm not aware of anyone with straight DCIS having to go through chemo. Also with TN, there is no hormone tx. What does your doctor say?

barbe1958

I agree with hrf! You may only need surgery and possibly rads. DCIS isn't treated with chemo so you dodged that bullet without realizing it!!! Keep us posted on what treatment you are offered. We're here for you...

TheLadyGrey

I'm one of those lucky folks whose diagnosis completely changes on final pathology.



I am now:



6 mm invasive Grade 3

ER + (90%)

PR + (70%)

Her2++ and, pending final, likely +++.



So, yesterday I was something different than I am today, and that something different is a bit more.



I'm going to have to decide some stuff pretty quick and since I spent the last six weeks going to Internet Medical School on ER/PR - cancers, I got caught flatfooted. I don't deal well with that.



I have one week until the pathologist appointment and I cannot come up with a solid reason to put myself through this because "maybe" some cancer cells slipped through? Outcomes with my profile appear static- regardless of chemo, etc., 20% of us die within 10 years of this disease. I have not seen a study which suggests chemo/herceptin, etc., improves outcomes with T1 tumors. which tells me I am missing something, the question being what?

suzieq60

LadyGrey - take a look at this study - it proves the benefits of chemo/herceptin for small node negative cancers

http://jco.ascopubs.org/content/28/28/e541

elmcity69

Hi LadyGrey,

 Sorry to see you've joined "the club" (agh what a phrase!).

My clinical profile is different than yours, obviously, but I still never thought twice. Herceptin was much easier than the AC chemotherapy. Some palpitations midway through, but my ejection fraction stayed steady and I have no problems today.

I've watched many women on these boards ponder treatment choices. While it's important to know one's treatment protocols, it's also important to avoid rumination or oppositional decision making (ie, who is this white coat to give me poison etc etc). I am not accusing you of this, merely noting that it seems a common coping skill and advising you to steer clear of it.

I'd do it all again gladly to keep cancer free. It is what it is. This disease has eluded science for hundreds of years - if it took no treatment, or the "alternative" stuff (whatever one qualifies as such) - humanity would be in the catbird seat, really.

 Good luck with your decision making.

Janyce

Mantra

Did you have any positive nodes? I know it's a tough decision because it's based on something that is unknown and invisible.

I wanted to tell you about my sister's experience with Chemo and Herceptin.  Like you, she couldn't imagine putting herself through this. She referred to chemo as injecting pure poison into her body. She is er +/pr -/Her2 positve.

It's now been 16 weeks since her surgery. She had 16 positive nodes. But she has dug her heals in and decided she would do whatever was necessary to live. I'm not saying it was a picnic, because we all know chemo isn't. She has had chemo every two weeks and her last treatment is tomorrow.  Chemo is Wednedays.  Thursday, Friday, Saturday and Sunday are her bad days. No nausea at all thanks to medication. Just very tired, and stomach issues plus one day of depression (Saturdays). By Monday she is ready to kick butt and has 9 great days before her next round of chemo. 

She has not had to miss any chemo treatments even though the treatments are every other week. We credit neulasta (sp??) for that. She's had numerous heart tests and her heart is doing fine. The toe nail issues have only recently started.  She made it through sandal season with perfect toenails. Last week she started having some numbness in her feet. Her attitude is it's temporary and this too will pass.

She truly is the bravest, most positive person I've ever met. She is planning a week's vacation before she starts her radiation, to celebrate the end of her chemo treatments.  She considers this a temporary set back in her life and said by this time next year she will be cancer free, have new breasts, a head full of hair (curly she hopes!), and ready to start living life again.  She is my hero!!

I wish you all the best during this difficult time. Meet with your oncologist and take to heart what he/she recommends.

Hindsfeet

Lady Gray, glad to see you here on this forum. This is one that I too have been checking out, and find it difficult to process the benefit of jeoparizing my body due to a few cells that perhaps escaped and in the long run of it all later to be dx with a heart or lung problem due to harsh durgs. I am interested in your journey and why and what you choose to fight your cancer.

If there are test that these stray cells do exist in my body then I will consider herpectin. Meanwhile, I am considering alternative treatments that are less harsh on your body.

Impositive, from the alternative thread is having something like a blood dialisis where her blood is oxogized...as we know oxogen kills possible cancer cells. She is going to a cancer center to have this done along with a few other alternative treatments. She is also her2 positive. This sounds like a possible option for me.

When I too read these threads on side effects of these drugs it's scares the crap out of me. I don't know what to fear the cancer recurrence, mets or the cancer treatment.

Sorry ladies here, who are bravely fighting through conventional treatment, I just can't do it. I support everyone's choices...but my mind won't let me do it...at least not right now. We have to feel some control and feel completely comfortable with our choice and the way we live our life.

What we all need here is support no matter what choices we make or treatment plan we choose. No options are good or easy.

Patriotic

Ugh. That little invasive component had to go and screw it all up. Bastard! Well, my pathology is nearly identical to yours in the ER/PR/HER 2 stats and grade. If you are even mildly positive, they will recommend Herceptin. I had two tests; first one via FISH was 2.4. 2nd test was equivocal (1.87). I am getting Herceptin for one year. I have experienced no discernible side-effects other than a runny nose. From what I've read, Herceptin is a game-changer and supposedly cuts your risk of recurrence by 50%.



For those that are heavily ER+, Tamoxifen (or AI, if you are post-menopausal) are supposed to be very effective.



I did five months of chemo It's no walk in the park. Some days truly sucked but honestly, it was not that bad. I was never sick due to the anti-nausea meds, and only managed to lose 15 pounds. LOL. Seriously, I worked all the way through. We women are tough. Dr. Susan Love claims that chemo cuts the risk of recurrence by a third.



The good thing is you have lots of treatment options now.

Patriotic

Forgot to ask: Did they do a Sentinel Node Biopsy? Do they plan to? That could change matters, as well.

scuttlers

Nothing to add other than - My favorite side effect of treatments is BEING ALIVE!



It was tough, but it was definitely worth it. (been NED since April 2010)

suzieq60

LadyGrey - you ask "Why would I put myself through this?" - Answer: to potentially save your life.

barbe1958

ER+/PR+ bc is normally a very slow growing cancer. Chemo only targets active cells so there's normally no point for ER/PR+ gals to get chemo. BUT, you have Grade 3 which means the cells are chaging quicklly so chemo would be appropriate in your case. I can't recall if you got a mast, but the tests for ITC (Isolated Tumour Cells) is normally done at the time of the mast. That would let you know if there are extra cells floating around. I had some and still didn't get chemo assigned!! My surgeon said to "save the big guns for next time". There is a very good chance of recurrence and I can use the less harsh chemos before I have to load my body with the heavy ones. Also, your doc might prescribe an AI or Tamoxifen which will help your body fight the stray ones. Keep us posted, sweetie!

xtine

"I have not seen a study which suggests chemo/herceptin, etc., improves outcomes with T1 tumors. which tells me I am missing something, the question being what?"

I'm not able to pull studies out of a hat, but I know HER2+ is a very different beast. You have a very aggressive cancer which is likely to misbehave. Herceptin is a pretty amazing drug that has changed the outcome of many many women in the past few years - what used to be a death sentence is now highly treatable. They tend to give it with chemo, but I'm guessing the chemo choice would be pretty manageable given your pathology. And Herceptin tends to be well-tolerated.

I was fortunate that my surprise IDC was not HER2+, so I haven't been in your shoes. But from everything I read, I would seriously consider herceptin if I was. It would be a crappy year, particularly during the chemo part, but at the end of the year you would have a much better chance of many more non-crappy years.

Merilee

Lady in gray

Did you have clear nodes and what stage are they now telling you? 6MM is concerning.

You may have a chance to stop it in its tracks now where later, maybe not. Just something to think about. The last thing you want is to have to deal with this again, trust me I learned the hard way.

It sucks no matter what, hugs

dlb823

LadyGrey, I can't address the need (or not) for chemo in your situation, but I can assure you that using ice on fingernails during chemo infusions should prevent the nail damage you've read about. Nails can suffer during chemo because the chemo is going after fast-growing cancer cells, but knocks out other fast growing cells, like hair and nails.  If you cut the circulation to the areas you don't need chemo by cooling the blood flow, you stop the damage.  At least one drug manufacturer offers ice mitts.  Some women use Penguin Cold Caps to keep their hair.  I personally used a bag of frozen peas (not as messy as ice when it melts) to avoid nail damage.

Also, be careful as you're reading to note if the chemo SEs you're reading about are being reported by someone with similar stats to yours (early stage, albeit aggressive, bc) or a woman with metastatic bc who has been on and off a slew of chemos for multiple years.  Hitting your bc aggressively now should hopefully keep you away from the latter situation.  And no matter how old they are, your children need you and are worth enduring the most common chemo SEs (IF chemo is even recommended for you), like fatigue and temporary hair loss.     (((Hugs)))  Deanna 

TheLadyGrey

I don't think I can do this chemo thing. I've thought and thought and thought, and what I keep coming back to is if this is going to kill me, let's get it over with.



I have ALWAYS been a get it over with kind of chick.



I've been through too much in the last five years and people look at me and say "LadyGrey, you've been through so much already - this is nothing" and I smile and think "you just don't get it - I'm done. I am totally out of emotional gas, and ain't no filling station in sight."



I think I'll end up killing myself. Killing myself is not a more noble death than dying of cancer or dying of heart failure. I'll be the precise same amount of dead.

Door numbers one, two and three all lead to the same place. I think I need to stop struggling so hard and accept that this is, one way or another, the beginning of the end for me.

I am who I am. I wish I was better, braver, more stoic and thankful. I'm just not.>

suzieq60

LadyGrey - we all care about you - ((((((HUGS)))))).

Stop worrying about cardiomyopathy - as I said on the other thread, your heart will be monitored very closely and I'm sure you'll be fine. I remember when I found out I had to have chemo, something I hadn't even considered. It does floor you, but you have to find the strength to keep going. My DH was the difficult one as he has had 2 lots of chemo in the past 8 years - anyone would think it was him having to do it again. But, I'm strong and I made it and I don't regret it (except for the now really curly hair).

One thing to remind yourself of - we are lucky to have drugs like herceptin available to us. My onc was glad I was triple positive because we do have the drugs to target it. Imagine if it was 7 years ago and you didn't have the choice - no thanks.

Please PM me if you want to reach out. I'm here a lot as you probably noticed - these boards have been my lifeline. We are all here for you.

Sue

cookiegal

TLG...I think it may be the Herceptin which is the real key. You may be able to lobby for a gentler chemo, or possibly stand alone H. You still have a really small tumor size. Keep your head up, there may be some good news for you.

gutsy

It may sound corny, but take one day at a time. Don't anticipate all the things that you would suffer. Doing nothing will not give you quality of life, it will likely give you progression and the suffering that comes with that. Yep, I did chemo and it was not pleasant. My memory seems to be effected, I lost all my hair, had joint pain. To me a small price to pay for life. All manageable.

 I read your last post, I suggest looking into some Atavin or an antidepressant to get your thinking to a more realistic place. You are not at death's door, you are not diagnosed with stage IV cancer.

ruthbru

You have a family to think about, not only yourself! Get the facts, get off the computer and do what you need to do to LIVE! I can advise this because I, too, read every single possible SE and was scared to death of chemo; but once I decided it was my best shot to live a long and healthy life, I turned off the the computer and didn't log back in until I was done with treatment. For me, chemo was not fun; but I never missed a day of work (except infusion days) or any of my high school child's events (except chaperoning the post-prom party), or anything else that I needed or wanted to do. I did not need to do herception, but a friend of mine who did took her foreign language students on a 3 week tour of Europe between her last two treatments. Many people get through this without all the horrible SEs you are reading about (naturally it is those who are having problems are the ones talking about it). Just for the record, my herception friend is over 5 years out and I am closing in on it. You can do this, and you can be really, really O.K. in the end.

Hindsfeet

Lady Gray, you are still early stage and the mx might have removed all the invasive cancer cells, especially since it was small. I struggle too with preventive harsh C treatments. Like you said, the risk facts for the drugs could be as bad as a possible recurrence. If you are dead set against chemo and herpectin you might look into alternative treatments. I am. My biopsy removed 2 C which was all cancer. I haven't had surgery yet so I don't know the extent of my dx.  if I learn that my cancer has spread beyond the breast, I may consider herpectin and going to a alternative cancer center. If you are really concerned you might ask your oncologist for a pet scan or to check for tumor markers. This might give you a little comfort that the cancer hasn't spread elsewhere.

Whatever you do... don't have the mindset that your dx is a death sentence. Do what you have to do to give you peace of mind.

Merilee

TLG

Stage one is very treatable. There are milder chemos where you will not loose your hair and such. Look at CMF it used to be the standard before AC and TC came alone. It is much gentler and they give you all kinds of support meds, for anti nausea and such. I never barfed once on it and worked all the way through treatment.

This talk of killing yourself tells me that you are feeling cornered and desperate. You may think you don't want to put your family through it. I guarantee it will make you family closer. It is one of the hidden blessing in this nasty thing called Cancer.I think most women have similar thoughts and it is important to gather a support group of people who love you along with great professionals to guide you through the overwhelming amount of info that you suddenly need to digest and  make decisions about. Get thee to the Doc or therapist who can help you make decisions. Some women opt out of chemo all together with stage one and do fine.

If you want to PM  me go ahead. I have been through chemo twice and I am still standing and making new plans for my future. It sucks and you feel picked on but there is a way out and forward I promise.

suzieq60

A pet scan or blood test will not show up any stray cancer cells.

barbe1958

Lady Grey, you say that "killing myself is not a more noble death". You've got it wrong sweetie! Killing yourself is the most selfish thing a human can do - not noble at ALL!!! Google those kind of thoughts!!

As for being brave, there's a great saying on these boards that you don't have to be brave, you just  have to show up!!

You may get off without chemo and save it for next time (as my surgeon says)!!!

I do understand what you mean about being 'done'. I am under inestigation for nodes in my neck. I am not even worried because, I too, am done! I have nothing left to fight with either. But if this is a recurrence for me, remember, that you haven't even given your cancer any trouble yet!

Moderators

Hi TheLadyGrey,

We understand you're having a tough time right now, and hearing the diagnosis of breast cancer can be quite overwhelming. You are not alone with these feelings, as you can see by the large number of men and women on our boards.

Breastcancer.org is not in a position to assist those contemplating suicide or self-injury. If you are having thoughts of either, please seek immediate, professional assistance. You may call 911 (or, if not in the United States, the comparable emergency number in your country) or visit a hospital emergency room, or call the National Suicide Prevention Hotline at 800-273-TALK (800-273-8255). There are many places that can truly help you.

As a side note, the ladies on the boards offer a fantastic support group for sharing your thoughts and feelings. Have you considered reaching out to the Relationships,  Emotional Crises, Anxiety and Depression forum, the Stage I & II forum, and the Alternative Medicine forum?

We sincerely hope you'll seek the help you deserve.

All our best, 

--The BCO Mods

SpecialK

TLG - I am disturbed by your recent post.  You are making assumptions that are not borne out by the numbers.  You are an intelligent and intuitive person - please try to absorb what those of us who have already had this experience are trying to tell you.  Stage 1 cancer is not likely to kill you.  Chemotherapy has manageable side effects, you do not need to lose your hair or nails, any nausea can managed, the majority of us are still productive and busy people while receiving chemo.  The vast majority of us receiving Herceptin have no cardiac issues, you will be monitored while receiving it.  Chemo is just a few months - a short time to not feel your best.  I understand your emotional exhaustion - I have suffered losses in the last few years myself and sometimes it is hard to mount a rally to what life hands you, however, nobody kills themselves in a vacuum.  It may permanently solve your temporary problem, but it will permanently affect everyone that loves and cares about you.  I know that you have been blindsided by the changes in your diagnosis, and I know that you are feeling that you are not up to this challenge, but you need to look at what treatment of your very early cancer entails with a rational eye and realize that you can, in fact, deal with this.  Please don't dwell in the short-term aspects of chemo, look forward to the time beyond your treatment and to living and doing well.

Hoolianama0508

LadyGrey,

To answer the question of WHY:

Because your life is worth living in spite of the fear of side effects that you may or may not get from chemotherapy.

Because your grown children still need your love and presence in their lives.

Because this diagnosis is not the summation of what your life is going to be after treatment is finished.

Because the future still holds great things for us all.

It is indeed a frightening time. We are here to support you.

GramE

I know I (and you) am/are  not unique in asking WHY should I do this.  At age 62 I was dx with 6 cm, IDC, Her + (info at bottom of  this post).   I had travelled to many parts of the world, including India, England, Greece, Mexico.   I had lived a decent number of years.   My only son was getting married 3 weeks later, my DH had died 5 years earlier, I had no significant relationship and had quit working when my DH became ill.    My son could/ would inherit my (small amount) money, I had no outstanding debts, and my overall contribution to the world was nill.     HOWEVER, I chose to undergo dose dense chemo, herceptin for a year and have been NED since.     

Since diagnosis, I have become active in my community, including being elected as an officer of one group.   My first grandchild arrived and I get to play with her almost every week.   I have made friends with some wonderful and interesting people.   Life goes on and there will be bumps and detours along the way.    Is that what "they" call the will to live?    

Best wishes with your decision - and I have to add that suicide is not the answer for me.    

dragonfly1

TheLadyGrey We hear your fear of facing this much treatment but it's just not as bad as you think. Yes, chemo has side effects but they truly are manageable and it's time limited. I managed to have most of the possible SEs and still worked the entire time. 6 weeks after chemo, your hair will be growing back and your energy will be returning and the chemo experience will be fading away. Herceptin is easy to tolerate and your heart function will be very carefully monitored. If there is a significant change, Herceptin can be stopped.

As for how this impacts your life, believe me you can still very much live your life. Watch the video listed in my tagline-it's me skydiving 3 weeks after the final chemo infusion. I was tired but I was there. It wasn't about bravery or stoicism-it was just about doing the same thing I do for every birthday and not letting BC stop me. I also went on a 2 week international trip 1 month after Rads (4 months after chemo) because I intended to enjoy my annual vacation as I always do. This diagnosis and treatment does not completely define you. It's something that will more or less require a year of your life to treat but you can still get on with the business of living your life at the same time and it does get progressively easier as you go along. My point is, you don't have to give up everything during treatment.

I hope that you are not truly suicidal or depressed, but if so, as the moderators and others have said please seek help right away. Even passively hurting yourself by taking no action/treatment has an effect on everyone who loves you. I suspect that you are more likely just completely immobilized by the panic and fear of what lies ahead with this treatment. Maybe it would help not to look so far ahead-tackle one part of treatment at a time. I'm only a few months away from finishing Herceptin and I can assure you that things are only getting better-fewer appointments, feeling better every day, etc.  Normal life returns.

And to those who have told you "you've been through so much already..." I suspect that they all see tremendous strength in you and sense that you are a survivor. I don't know what you've already overcome in your life but you can overcome this as well. Give treatment a chance. We are all concerned about you and will help in any way to answer questions as you go through the process... 

whatRstatsanyway

Hey there, Lady! There is nothing warm and fuzzy about being triple positive, but it is what it is and a whole pile of us have done the "full meal deal" and have gone on to live well - side effects be dam#*ed.

No it is not a cake walk, but there are things that can be done to minimize side effects. I was scared stiff that treatment was going to leave me an arthritic, osteopenic, chemo brained cardiac cripple unable to work or control my life, let alone enjoy it. Guess what? Almost three years out and I am going stronger than ever. I did pick and choose options on the treatment menu, exercise and take care of myself - to live the fullest and be "there" for my adult kids.

Yes, your kids are grown, but you are still an integral part of their lives. In a quiet moment last Thanksgiving, one son, 21 and a hulking college fullback took me aside and said " I'm thankful for one thing, that you are still around"  a man of few words, that spoke volumes... If I had not done anything but surgery, I had a pretty much guaranteed  probability of reoccurrence, or worse by now. I wouldn't have seen him graduate, or see his brother go to MIT. I wouldn't have been there to help them move or get them set up.

There is a life after treatment. Yes there are potential side effects that scare the living sh*# out of us, but no one gets them all! Last week, I was in a bit of a panic wondering what Femara would do to me as I need my hands and a brain to work. Guess what? I feel better on this than on Tamoxifen - who'd a thought?

Bottom line, a diagnosis of cancer is a real kick in the pants. Treatment is no joy BUT with it, there is the very real potential for real good quality of life to get out there and enjoy those children and maybe even be around to see grandchildren. You have many options open to you other than a premature exit - everything looks pretty grey there now, but it does get better - ask anyone of the thousands of us that are on this site .....

You are not alone, but you, alone, must decide what you wish for yourself. If you are like the rest of us,our choice was the chance to have a normal and full life outside of treatment for as long as possible. For many of us this is not a pipe dream, but a reality... courage, strength, positive thoughts and cyber hugs.