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Topic: I thought survival rates were better. Negative thinking.

Forum: Young With Breast Cancer —

Connect with those under 40 who have been diagnosed.

Posted on: Jan 6, 2020 01:37AM

blah333 wrote:

So, having a scare about recurrence I am doing all kinds of research and basically rotting my brain and increasing my worry.

I have to say the mainstream media portrayal of breast cancer is that most people can live a long time now after it but then I see the rates of survival for some cancers and they act as though 5 year survival rate or 10 year survival rate is good. I'm 37... I still haven't accomplished anything in my life. If I were to get a cancer where I could maybe live 3-10 years (and with time consumed by treatment) I'm not sure what I would do or how I would spend my time. That's not long to build or create something meaningful. "Sadly" I did spend my younger days messing around or exploring, music, arts etc. Having to get a mastectomy at 35 I totally felt my prime of life is over. But I recovered from surgery and have been feeling good and was finally feeling optimistic about the future, but I've recently felt a lump and need a scan soon.

ANYWAY - based on the media I thought survival rates were at least 15-20 years for some invasive cancers. I do have to remember that the median age for breast cancer is 55, so people who are 65 stage II, living 8 years would put them at 73, which is not a bad lifespan. I wish I had been more cognizant of that fact I could have a deadline and premature death. I thought after my mastectomy I would be good to go for quite some time. Maybe I still will be but it's hard to feel optimistic with swollen nodes (since surgery) and a lump appears. I wish I had some kind of warning. My grandmother got breast cancer in her 70s, I didn't take it that seriously or think it was hereditary due to her age. But my mom got it at age 50... that should've been a wakeup call but I arrogantly thought my diet and different lifestyle would protect me, at least until I got older.

Being told prognosis is good, likely you'll live 5-10 years! But also having physical impairments, I'm not sure I would see the point. What a sad life. Breast cancer ads are so obsessed with mammograms and "survivors" but I guess they don't do an update that that survivor would have a recurrence in 3 years.

Perhaps I have been reading this board too much. I hate to see how people jump from one diagnosis to another then eventually Stage IV. I was looking through old threads of other people in the ""Not Diagnosed with a Recurrence or Metastases but Concerned" section, and multiple instances there were women getting a lump checked out which turned out to be benign, yay! But I see in their footer that they would become Stage IV within 1-5 years.

Anyway - I knew I would have to be monitored and screened and have ultrasounds but based on the %s DCIS/mastectomy I wasn't anticipating needing biopsies so soon, or having multiple scares. I could definitely "carpe diem" more but it's hard, and has been difficult (economically) for the past 10 years, since the recession. I tried to tell myself, why not just act as though I only have 10 years and really live it up, but it's hard to imagine what that means. I can easily enjoy small moments each day but I haven't accomplished anything. Not sure how to plan my life. I never have been, never had a dream job, never met a partner, I am kind of just a dreamer and wanderer. I thought I had time and that 40-60 was going to be really good. I've always liked older people and they made being older look easy. Now (at 37 post-surgery body) I can see why our society idealizes youth, and I wish I had enjoyed it more. "Take it day by day" doesn't work so well, I've done that and ended up nowhere.

How do I adjust my expectations that .. realistically I will probably die before my peers, I will probably have physical impairments (I do - minorly from swelling/rib issues but would get worse with recurrence) and how do you set goals if you have no idea how long you might live and that you might die before 50?

I hate living a degraded existence. (ALSO - how do you not compare yourself to all the naive people still running around mostly carefree and oblivious that a health issue could come out of nowhere and fuck them over?)

I know I'm being melodramatic if you look at my current only diagnosis but.... I'm melodramatic and needing biopsies/scans stirs up all this shit in me. How do I not let it stir me? Time will help but... lumps are real. This is my first chest lump after surgery.

Age 35 at diagnosis Dx 9/2017, DCIS, Left, 6cm+, Stage 0, 0/2 nodes, ER+/PR+ Surgery 12/1/2017 Mastectomy: Left, Right
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Jan 13, 2020 02:57PM blah333 wrote:

Runor - thank you for your story...I appreciate adding these ideas into the conversation.

BUT - I was already strong before breast cancer. I really didn't need any more strength.. personally I think it is an overrated quality in American culture. I would much rather be weak with a good life than strong with a shitty one or to have extra adversity to become even stronger. Stronger for what? to endure even more bullshit? Wow, we are great at enduring physical strain, surgery, degradation... I don't feel stronger from this really, instead I know how powerless I am. Another round won't make me stronger, it might quite possibly wear me out. At some point, after enough years of struggle (I have made less than $13k for the past 10 years, even less in the past two years) you just can't take any more. I don't have any pride or self satisfaction in being strong or having "balls." To me your buddy's choice seems quite rational (vs. pussy). If I fell off a cliff I wouldn't go around hanging on the edge of cliffs. Just like having breast cancer, I'm not going to keep breast tissue in my body after that (of course some is left behind but you get the idea). Your buddy sold his sled, I cut off both my breasts. We do what we can to avoid repeat trauma...

However I agree, obviously we cannot bail out of it and it does yield a new POV or cast on life, unfortunately for me that is a darker one. I already leaned in that direction "dark" prior to this as well. I didn't really need any more... I used to think that we encounter problems that teach us various lessons, lessons we "need" but now I know that's not true. It's all random, things happen for "no reason" all the time. It annoys me - why couldn't this be more properly doled out to someone who does need more inner strength, and to face the facts of life?

Instead I realize my whole life could just be ripped apart into shreds or ended by some outside force that has nothing to do with my individual choices, and doesn't care if I've realized my potential or have done what I was put on this earth to do. Nature/cancer doesn't care how "special" I am. It could have chosen a more boring, shittier, uglier, stupider person instead, or a woman with much worse looking breasts than mine were, but it didn't. I did not grow up with a religion but I used to feel some abstract layer of protection or care or regard. Now I know it is not there... it really is like a loss of innocence of some kind. I am surprised that was still possible at 35+. Yet am I better off for it? Right now I don't think so. I wish I could go back to being oblivious about these things. I really cannot find anything fruitful in this except for philosophical questions or ponderings like these, or to try to extract whatever insight can be realized only through an experience like this. However I can't fathom anything that will have made it "worth it" worth going through. It's just a possible consolation prize crumb I'm trying to find on the floor.

Age 35 at diagnosis Dx 9/2017, DCIS, Left, 6cm+, Stage 0, 0/2 nodes, ER+/PR+ Surgery 12/1/2017 Mastectomy: Left, Right
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Jan 13, 2020 04:56PM - edited Jan 13, 2020 05:25PM by trinigirl50

This Post was deleted by trinigirl50.
trinigirl50 Dx 3/7/2015, ILC, Left, 6cm+, Stage IIIC, Grade 2, 20/24 nodes, ER+/PR-, HER2- Surgery 3/7/2015 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 4/14/2015 AC + T (Taxotere) Hormonal Therapy 9/14/2015 Arimidex (anastrozole), Femara (letrozole) Radiation Therapy 10/1/2015 Whole-breast: Breast, Lymph nodes
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Jan 13, 2020 07:34PM MountainMia wrote:

blah, what would you like from us? Were you looking for words of wisdom or encouragement or agreement or advice, or was your original post mostly a rhetorical rant?

The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Jan 13, 2020 09:05PM MinusTwo wrote:

And any of those things are valid. We just want to give what you need if we can.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jan 13, 2020 09:37PM runor wrote:

Blah333, there is a whole philosophical system that says, essentially, that life is bullshit. Although they use the word suffering, Life is suffering. And then you die. Can a billion Buddhists be wrong? (I don't actually know if there are a billion, that's just a guess). Did you get cancer to teach you a lesson? I doubt it. If cancer is a lesson there must be an awful lot of profoundly stupid women floating around out there. No, this is not a teaching event. Although to read posts here you will realize that some make it into a learning event. They mold it into something other than it obviously will be. Simply put it's the make lemonade out of lemons way of seeing life and dealing with the hand you are dealt.

Am I telling you to make lemonade? Hell no! I am the worst person for that kind of advice.

I was not trying to say that it's great that you grew balls from having cancer. No. Not where I was going. Was saying that getting up every day when this as the first thing on your mind and in your vision IS having balls. Whether you want them or not, needed them or not, it's just a reaffirmation that you've got them. I think that's good to know.

2017 wasn't that long ago. This is still raw. Time will take the edge off. But it will never go away. I think you can kiss your happy ideas of a carefree, oblivious existence goodbye. Everyone here has done the same. They continue, they have no choice, some continue well, others it's one hell of a battle, but it's not the same, not for any of us.

I am married and this separated me from my husband in a way I can't put to words. Like before we were in this together and then a glass wall came down between us and I was in something all alone that he was not part of. I became a member of the Knowing I'm Going To Die Club. He did not. His was knowing he might be left behind alone. We were on opposite sides of the same horrible event and it left each of us, to some degree, drifting away, unable to reach the other for support. Each drowning in the same ocean, unable to save each other.

I sense anger (duh!) and isolation and terror and desolation in you. I don't know what to say other than I am sorry. These feelings are hell. I hope time dulls them. But it will never remove them.

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 14, 2020 06:22AM ctmbsikia wrote:

It's just so true that every single person's experience with cancer is different. I do feel horrible for all the young women here. Harsher treatment, however I don't think that truly means your life will be cut shorter than anyone else's? Even being diagnosed at 56 I recently went through some negative angry thoughts until I just realized that hey, you're going to die no matter what you do. It was just my time to embrace my own mortality. I don't know, that helped me move on and stop wasting time and use my time and thoughts more wisely. It also helped me when my husband got a terminal diagnosis in late October. That's what I meant by it can get worse and unfortunately for some, it will. I am not mad or angry anymore. We are not to the pain and suffering part yet, so I do not let my mind go there, AT ALL. I stay right in the moment and I face each moment with as much grace and dignity that I can muster. The pissed off fire in me is now just smoldering and everyday I'm still looking to be more inspired on both my own cancer road, and now my husbands.

Wishing you some peace of mind and a lump of nothing!

Dx 12/14/2017, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 1/16/2018, LCIS, Right Surgery 1/30/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/10/2018 Whole-breast: Breast Hormonal Therapy 6/25/2018 Arimidex (anastrozole)
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Jan 14, 2020 10:22AM runor wrote:

CTMB, good post.

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 14, 2020 12:46PM AnnC2019 wrote:

Runor thank you for sharing your beautiful insights with the group. It takes all the unnamed bottled up stuff inside and makes it tangible

Dx 6/19/2019, ILC, Right, 3cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 8/15/2019 Arimidex (anastrozole) Surgery 8/28/2019 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Radiation Therapy 11/4/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Jan 14, 2020 01:23PM Yogatyme wrote:

runor, reading your post made me think about M. Scott Peck’s, The Road Less Traveled. The first line is ,”Life is difficult.” Indeed it is and I cherish the parts with smooth pavement, but these unpaved, bumpy sections are for the birds!

Yogatyme Surgery 3/3/2019 Prophylactic ovary removal Dx 7/19/2019, IDC: Papillary, Right, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 8/13/2019 Mastectomy: Left, Right
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Jan 14, 2020 03:16PM runor wrote:

Yogatyme, I keep few books but one that I have reached for over and over, battered and frayed at the edges, margins scribbled in, is my copy of M. Scott Peck's 'The Road Less Traveled'. Solid, solid wisdom. On the wall in front of me now is a pink sticky note. It says, " Mental health is an ongoing process of dedication to reality at all costs." - M. Scott Peck. Human beings are burdened creatures. We know too damn much for our own good. We see the bullet coming and have to keep living anyway. No small task. Mental health is brutal. Delusion is comfortable, but ultimately, crippled. We each must pick up our burden and walk. There will be no one coming along to take it for us. I know. I've been waiting. So far it's just me, looking like a dummy, all alone, sitting on the side of the road, waiting for help that isn't coming. I can get up and walk until the day I die or I can sit there until the day I die. Only one thing is certain. The die part. Disclaimer: I am very, very bad at taking my own advice, so I claim no moral high ground. Like I said, I'm still sitting on the side of the road hoping some outward force can rescue me from this paralyzing misery. So far, not happening.

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 14, 2020 06:46PM Yogatyme wrote:

runor, it sounds like our copies are in the same shape for the same reason. When I feel particularly ungrounded, I go right back to M. Scott Peck. I have recommended his books over the years but won’t lend mine. There are few books that I won’t lend and when I do, I encourage the person to pass it on to someone else, but The Road Less Traveled isn’t in the lending library

Yogatyme Surgery 3/3/2019 Prophylactic ovary removal Dx 7/19/2019, IDC: Papillary, Right, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 8/13/2019 Mastectomy: Left, Right

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