Does it really matter what "treatment" we take?

GreenEyes81

I am getting ready to meet with all the f/u docs next week, onco/rad onco, ps, surguery f/u and obgyn to discuss one remaining overy/random bleeding. My surgen seems to think I won't need chemo/radiation. At first that seemed good, then the more I thought about it not so good. Maybe something will be missed by not doing anything. Feel like a want a full body PET to make sure there is not some other random cancer going on. It's like neither option is good. So I started scrolling through the threads looking at what people were diagnosed with, and then what happend as the years went by.

If feels like people did everything, and still had a recurrence and to the point of mets. Some with the same stats as me, caught early. Was the chemo, hormone therapy worth it? Rads? I'm starting to think these stats of being alive in 5 years is just that, alive. Not cancer free. Not a normal life. Not healed masectomys, just still putting poisen in our bodies keeping up the "good fight".

The next person that tells me it's ok, I shouldn't worry cause it was caught early....I may not be very nice. Looked into holistic stuff, shoot some of the stuff I already have been doing for years. And if there was a holistic way to heal cancer, why dose every website have a "new" holistic method?

I guess its my new rant, wave of emotions. Slowly realizing "normal" is not going to happen, and I am not real sure I am ready for new "normal" yet. I'm not convinced doing nothing further is good, nor that more treatment is really going to make a difference. Have shitty side affects only to have a recurrence or mets in a few years. Rather just skip it all now and live as healthy as possible and wait for my next new DX date.

KBeee

A you've seen here, there are certainly no guarantees. Every treatment has risks and benefits. You need to ask each doc the specific risks and benefits to you.

If you had a lumpectomy, rads will decrease the likelihood of local recurrence. It does not eliminate if, just decrease the risk by quite a bit; it comes of course, with side effects.

Your MO will likely do oncotype or mammaprint to determine the recommendation for chemo. Since you are ER positive, hormonal therapy will likely recommended. These help prevent distant metastasis. Once again, they reduce the risk, but nothing is perfect.

I make lists. Pros and cons of everything. That helps me determine what's best for me. Your docs should help you determine what is best for you in your unique situation based on your tumor, other medical conditions, etc. then, take the info and make the best decision you can. That's the best you can do. That's the best we all can do. These are tough decisions, best widhes

Icietla

What is "a normal life," anyway? Serious question. Each person is unique and has their own life circumstances. Does having life circumstances and life experiences different from others' make one less of a person? -- does it make one's life less meaningful?

Brightness456

I think I understand what you're saying. The life I had a few months ago is vastly different from the life I have now. Then, my attention was on moving forward, new goals, plans. Now my primary focus is on how I'll react to chemo, how and if I'll keep my hair, which new procedure or treatment comes next. This is not my normal. And in between all the health stuff that monopolizes so much of my life, I'm trying to fit in what I still consider my real life, the real me under all this new and horrible cancer stuff. When I imagine looking in at my life from a distance, it's bizarre that cancer has taken over so much.

I weigh the options and odds a lot. I'm starting chemo in a few days. It will change how I look and how I feel significantly. Will it even do any good? I'll have to do radiation after chemo. Again, it may cause terrible SEs. Will it benefit me enough to be worth it? There simply is no guarantee and Ive never been good at gambling or playing against the odds. Still, I look at my loved ones and I know I want to live and be healthy and be my normal again, so I pray I'm making the best choice and I move forward even though I'm terrified.

I suppose I don't have any answers either..

VL22

Well I know that I was extremely active, running 15 miles a week, planning outings with my family and loving my job up until all this started in May. I for one am anxiously awaiting getting back to my normal life, because this sucks. It is necessary and I'll throw all I have st this disease, but then I want to move on

dtad

Greeneyes...I completely understand what you are saying. I have pretty much the same diagnosis as you. I did a lot of research and made an informed decision not to take an aromatase inhibitor. Many factors went into my decision. My age, my current health and simply QOL issues vs chance of recurrence. The decision about treatment options is very individual. I decided to have a BMX since I also decided to refuse anti hormone therapy. I have lost 30 pounds and try to exercise daily. This has been shown to lower recurrence rates significantly. I also take several supplements. So far so good. There are no guarantees. We just have to decide which route is the best for us personally. I support and respect all decisions made. Good luck to all navigating this complicated disease.

NotVeryBrave

GreenEyes - I have the same conversation going on with myself at times. I don't want a "new" normal - just plain old normal would be good. I'm hoping I'll be back to somewhere near there eventually.

And I've debated every treatment that I've had. I can't help it. I'm not good at just following doctor's orders. I always wonder if what they want is really what's best for me.

So, in the end - after I've researched my butt off - I've gone along with most treatments. I try not to think about what problems they might be creating and try to focus on doing all that I can (within reason) so that I don't regret my decisions later.

Tara17

Green eyes ...the opinion you form by reading here may be skewed. The women who post here are mostly those who have some active medical issues, are undergoing treatMent and need support as they are going through it. So, its very possible that many women who are not getting any active treatment and and don't need support are not posting here . There are a few women who have finished all treatment who continue posting here as a way of helping this community actively . There are specific survivor threads where women are posting that they are 10-15 years out and doing well.

Brightness456

I think Tara has a good point and I try to keep that in mind when reading here. Still, I'd be lost without this place for now...

GreenEyes81

Thank you all, Tara are right. I did not realize there was a specific thread for "survivors"....going to go find it to balance it out in my head. I know "normal" is relative. In my head, I have just been waiting for my insision to heal so I can roll over "normally" onto my right side. So I can hug my kids and not remind them to be gental. Over the last couple of days I am realizing this is my new normal, at least for now.

I am a detailed person, I don't do something just because a doctor says so. I listen, educate and then make a desision. In the past, that meant I made the desision and I have no regrets. This time, I think I am scared I will have regrets either way.

Brightness and dtad, thanks. That is exactly what I am trying to say. I certainly could exersise and lose weight.....I've been leaning towards the same desision as you dtad.

SelenaWolf

GreenEyes81... I'm sorry that you're here, part of the club that no one wants to be part of. It sucks.

I am six years' out from treatment now: Stage 2, Grade 2, (left, 2 cm), 1/7 nodes, ER/PR+, HER2- and underwent a lumpectomy, dose-dense chemotherapy, radiation and am still taking Tamoxifen (and experiencing few side effects). Just this past weekend, I went on a 50+ kilometer bicycle hike through the trails near my home. Life is, finally, calm and peaceful again. I won't use the term "normal" anymore because ... really ... what is "normal"? At some point you'll stop thinking of things in terms of "normal" and start thinking of them as simply what IS.

As Tara17 pointed out above, many of the women who post here are here because they are waiting for biopsy results, undergoing active treatment, experienced a recurrence or are still having cancer/treatment-related issues in some way. Sure there are a number of us that are enjoying disease-free life that still post here, but there are many, many women who have moved on from these boards and not been back.

As for whether- or not you're are doing everything you can, only you can determine that. One thing this horrible journey has taught me is that there is no right- or wrong way to "do" cancer. There is only YOUR way. As Time passes, you'll be less- and less aware of what feels like an axe hanging over your head and - although you'll never really forget that it's there - it will be less intrusive.

Racy

Greeneyes, next month will be seven years since my diagnosis and I can tell you that you will feel normal again. I still think about cancer and read this site every day but it doesn't affect the way I live except that I appreciate life more and take more opportunities to experience it. It could take you several years to get to this point but you will get there eventually.

In my opinion and experience, treatment is definitely worthwhile. The doctors will do their very best to recommend the most current and proven treatment options. Having an oncologist whom you trust and whom you can relate to and work with as a team is so important. You don't have to follow orders. Your doctor should welcome your questions and give you answers that satisfy you and help you make the decisions that are right for you. If you don't trust your oncologist, consider getting a new one.

It is better to take treatment now with the chance of cure rather than wait for your next diagnosis, which could be much worse and require life long treatment.

Finally, you might want to consider counselling or taking an antidepressant to help you feel more normal mentally. I had counselling for about two years and still take an antidepressant. These meadures helped me get to the point I am at today.

Best wishes.

Mucki1991

GreenEyes81

I offer this try not to compare stats. Here as the others mentioned the numbers are def leaning toward those who still have issues so your not seeing the entire picture. I also feel that others stats don't matter I believe only your stats matter and how receptive each person body is for cancer to spread. Chemo treats distance spread radiation treats local I understand not wanting to put this crap if your body if you don't have too. Good news if you choose chemo it would prob be very minimal.

I'm of the "new school" theory cancer spread has a lot more to do with the how receptive the host is, IE bones how hospitable or hostile is that environment for cancer cells to actually thrive there. Check out David Agus TED talk I do see that his views of treatment are where the future is headed. That's not to say that sub types don't matter however according to my onc , grade is what matters more as in my case I had cancer soup and that's not what my treatments are based on. I seen two of the best Oncs in my area and they both agreed on that. I know none of this helps you with your choices and for that I'm sorry I just encourage you to do more research. If you have yet check out the predict tool and cancer math info is prob a little outdated but it may give you more to think about.

Hoping you can find your peace on this

bluepearl

Life is a crap shoot with heavy on the crap part. You do the best you can. One cannot control everything and letting go of that need is actually a burden off your shoulders. After my first breast cancer, I worried and worried and worried....then I got it in the other breast. So I said to myself "All that worrying didn't do a damned bit of good other than ruin the two years before this diagnosis". Do not let it ruin the life that has been saved. None of us are guaranteed the next hour let alone the next year. The majority of breast cancer patients survive. Some do not, and within the do not ones, are those who had good prognostic factors all the way to bad ones. Ditto for those who survived. You do the best you can to lower the risks for recurrence, and that is all you can do. Enjoy the live that has been saved and btw...happiness will return to you....you just have to move forward with your grief in a way that helps you best. xoxox

EastcoastTS

I'll chime in here because you mention having "regrets either way" with your decision for treatment.

I think this is one of the hardest parts of this journey. We're often left to choose. Lump/UMX/BMX. Chemo/rads...or not. Post-treatment anti-hormonal depending upon pre-peri-menopausal and possible push to place yourself somewhere else for the best type of med.

My Oncotype score led to no chemo recommendation for me, however, I could have pressed to have it. I didn't want it but totally understand where you say: but maybe it's not so good to have no radiation or chemo. Although I chose BMX partly based on not having to have radiation, most likely (not guaranteed). But I'm not sure I feel totally "protected".

I will only tell you what I'm trying to do. Be content with what I decided to do (after much research) and try to find peace and happiness going forward. I'm still in active treatment but leaving that phase and seeking, again, the new/new normal.

This is all a crapshoot, isn't it?

swg

Hi! I'm in Philly, too. Just wanted to say hi. I don't know if you can PM people on here, but I'm wondering if there is a Philly support group. I was just diagnosed on Monday.

Meow13

I ask myself that too. Did I make a serious mistake not doing chemo? I don't think I'll ever know.

I try not to look back at my choices for treatment and be happy Im still NED. I don't ever want to deal with cancer again especially metastasized cancer. If I had done chemo would it have really helped keep the cancer at bay? So hard to tell the statistics didn't convince me. Too many variables. Would I have regretted chemo due to permanent side effects? Yes, those questions still roll around in my mind every so often.

NotVeryBrave

I have to think that if a treatment isn't warranted, isn't recommended then there must be reasonably good evidence to lead to that conclusion. My experience has been "throw pretty much everything at it" from my doctors. Then again - sometimes it seems like it's just where you go. The differences in prescribed care for what seem to be similar diagnoses is crazy.

At the end of the day (or year!), you just have to remind yourself that you've tried to make the best decisions you could at the time with the information you had.

Brightness456

I find myself tortured by this again this morning. I was right at the point of maybe benefitting, maybe not from chemo, maybe needing it, maybe not.I've done one of 12 weeks of taxol. Should I continue? Do I need it? What if I do some, maybe 4 or 6 or 8 treatments before I stop? I could continue with just the herceptin for a year. Would that be enough?

Why isn't there documentation showing how much benefit one can get from a lesser number of chemo treatments?

bravepoint

My BC was more aggressive than many of you on this thread so I wanted to do everything that I could as far as treatment. I'm about to start my second AI since the first one didn't agree with me. At the end of the day, you have to do what you feel is right for you and don't second guess yourself later on. Do I feel the same as I did before BC? No. I'm just a year out and am really tired most of the time still. My body is still trying to heal after 6 months of chemo and 30 rads..... Reading some of the posts above, I'm encouraged that things will get better.

NotVeryBrave

When I was ready to quit chemo after 3 of 6 rounds - it was explained to me that the recommendations for "how much, how many, how long" are all based on what research has shown. I had the same questions: How do we know that 3 isn't enough? Maybe 2 was enough? The answer I got was maybe it was and maybe it wasn't. I chose to continue because I know myself enough to know that I would blame myself for quitting early (even though I had valid reasons) if it came back.

One day down the road they may be able to determine exactly how much chemo a specific cancer requires. They just don't yet and so have to go with what has been scientifically proven.

Brightness456

I know you are both right. I'm just hitting a low today I suppose.

bravepoint

My oncologist told me that it's up to you ultimately so if you want to not do a particular then don't. I have asked myself if maybe I should have gone for a BMX instead of a lumpectomy. If I had known that I would be grade 3 and have a lymph node involved I probably would have. Unfortunately, I didn't know that til the pathology came back 2 weeks post surgery. I guess that's why I did everything else that was recommended. I would have quit chemo early on if it hadn't been for the support of my family. Radiation also hit me hard but I have to tell myself that these treatments have got rid of any stray cancer cells in my body and carry on living my life. I'm back to doing most of the things I enjoy. I don't have the stamina that I had before but I hope it will return. I am exercising, eating healthy and drinking only the occasional glass of wine.

ShockedAt48

I have my doubts about not doing chemo. At my first visit my oncologist said that I would likely have chemo since my tumor was large at 3cm. She added that unless my Oncotype score came in low I would have 6 rounds of T & C, then radiation. Well I was terrified of having chemo after she read the long list of side effects. I hoped for a low score and get one at a score of 16. She had told me that my mortality rate was 20% with surgery and radiation and it would drop down to 13% with hormone therapy. If I did chemo it would be reduced down to 6%. Well when I had my second appointment to discuss treatment with the results of my Oncotype score she no longer recommended chemo. But what really confused me was that my mortality rate would be 10%. I didn't like that number when I assumed it would be the same or lower than if I had chemo. I asked her about doing chemo and she said the benefits are not worth the risk because of my low score. I still don't understand, there is a 6% difference between those numbers. When I was at 13% risk she said to definitely do it but now that I'm at 10% risk she say no. Can someone answer why? Is it because the chemo is not that effective with my pathology based on the Oncotype test?

marijen

Brightness I read a wonderful post by Jaycee this morning at BC & Autoimmune - it's regarding chemo, herceptin. I think you should read, it will be the last most recent post on that topic.

GreenEyes81

Brightness, I hear ya. I tend to come here on my low days. Hugs!! At least I know you guys understand when no one else has a clue of the finer points of cancer. It is by far not a one box fits all situation.

Racy, thank you. You said "It is better to take treatment now with the chance of cure rather than wait for your next diagnosis, which could be much worse and require life long treatment." I was thinking it would be better to wait, what if nothing ever happened? lol If I'm diligent then any recurrence would be caught early. Maybe not? Could you elaborate?

Shocked- maybe the percent changes are based on your actual oncotype score once it came in?

Glad to know I am not the only one that feels like its a "crapshoot" guess. lol I'm ready to get info, process and make the best desision for me. One more week to go, I have 6 appointments in 2 1/2 days. lol I'm focussing my mind on knowing that what ever is done, I need to have peace. Not to look back, but forward. I wonder if the day I hear NED, it will be as impacting as the day I heard 'abnormal cells'.

We got this, at least for today!

secondchancetoo

Very interesting thread. Do I think it really matters what " treatment" we take? As a former nurse and now two time breast cancer survivor in my mid sixties my answer is a definite NO! One can throw the proverbial kitchen sink at this monster and if it wants you....it's gonna take you. Maybe not today, or next year, but it will come for you when it's ready. I know that's not what most folks want to hear or believe, but from my personal perspective, it's the truth. Wish I had better news to share regarding this disease, but I don't....

It's the elephant in the room when anyone talks about breast cancer that has had it, we all know that we are not in control, sigh, we just wish we were.

What to do? Enjoy every day no matter how mundane. That's the remedy

marijen

Thanks for your honesty secondchancetoo, it's taken me some time to come to your conclusion.

Daisy77

Hello ladies, I have been reading since I was diagnosed with dcis stage 0 in June. I had the nipple sparing full mastectomy w/ a node biopsy/removal done August 14th followed by the spacer surgery the 24th. Am dealing with the drains still but have had one fill since the surgery, then the new drains with expanders. Was wrapped too tight an almost lost a nipple, was unable the tolerate oxys, was vomiting with stitches in, got a rash and blisters from the donated collagen graph too. Am satisfied with my decision, I didn't think I wanted radiation and lumpectomy as with dcis, it can come back to the untreated breast or nodes. Man, sleeping is not fun though. We are strong women, we can do this!

Meow13

Daisy, sorry you had so much pain and especially not being able sleep comfortably. I hope you feel better soon.

Tara17

Green eyes, do go to the forum - Biographies and Inspiring stories --to read survivor stories and feel inspired