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

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 11/30/2017 Mastectomy; Mastectomy (Left); Mastectomy (Right)
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Jan 6, 2020 06:04AM - edited Jan 6, 2020 06:06AM by rubyredslippers

This Post was deleted by rubyredslippers.
I no longer feel comfortable displaying my diagnosis.
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Jan 6, 2020 06:56AM santabarbarian wrote:


First, I think you are right that there is a significant amount of "pink-washing" in the public discussions of BC. That's why people who don't have it are so dim about the details (as we were prior to diagnosis). We just don't get it until we GET it.

My situation is quite different from yours (I am 58) but what we have in common is the uncertain "sell by" date, due to cancer (the one I had is highly recurrent in the first 3-5 years). How do you plan for a longer lifespan, if lucky, AND ALSO live so as to make a shorter lifespan meaningful, if that is how it turns out?

I was a literature major and will never forget the definition of a hero by F Scott Fitzgerald as "being able to hold two opposing ideas in one's mind, and still act." This is what every BC survivor has to do. It IS hard.... hence, heroic.

For me, my priority has been spending meaningful time with the people who matter to me. Take the trip, show up at the reunion, connect with my kids, my old friends, etc. That's not hard to do.... just make plans, and keep them. Connecting with people we care about is (to me) the whole point of being alive. Much moreso than resume-building type activities noticed by the outside world. IMO.

One very upsetting aspect of dying early, for me, is possibly missing out on grandkids. I was extremely fond of both my grandmothers and always saw myself in that role one day, so it's hard to imagine not having that experience.

As it happens I have a friend who is your age, with 2 little ones (2 & 4 now). Before I was diagnosed I began dropping by once a week to give her a break and play w her kids so in case of emergency they would be familiar w me and I could help out. Well, once diagnosed and in treatment I decided to KEEP doing this, so that way, just in case I never got grandkids, I could still have the experience of "grandmothering" THESE kids. And it has been one of the highlights of my week to go rock a baby for a few hours or read books on the floor. I *cherish* that time. Kids don't give a F if you are bald as long as you engage with them and make silly noises and dangle them upside down! They *literally* jump up and down when I opened the door. And I just focus my mind on drinking in that joy, in and savoring it. Loving these kids is something I can do that has value and meaning. It has deeply mattered to my friend, and that love/attention/pleasure will be inside the kids forever as part of them, and it has been joyful for me. Win/win/win.

So I would suggest, maybe don't focus on an accomplishments suitable to a resume, but rather on connecting and deepening meaning. Do things that feel meaningful to you. That could be anything... if YOU derive meaning, joy, or satisfaction from an act, do it. Nobody else has to think it "counts" but you. It can be making food for someone needy, fostering an animal, loving on some kids, creating something beautiful, registering voters, visiting the homebound, or whatever floats your boat. Volunteering is a wonderful way to give others happiness, and giving other people joy is a great way to swiftly feel satisfaction and meaning.

At the same time, those acts may lead you to ideas that you can build on for the longer life span too. You may discover some longer-term life pathways through doing short-term meaningful acts.

Last, though I am dinged up a bit, I am alive. Many aren't. If I don't realize I am very lucky just to be here, that discounts the experience of every person who isn't, who would LOVE to have traded places with me. So I think it's right to feel lucky, and grateful.

My very dear friend has stage 4 lung cancer. She is FULL of joy. She elevates every room she walks into. She spreads her joy around. And she has BLASTED past all the medians (and even the maximums) for survival in stage 4. Now more than 4 years. She is my mentor! When I was diagnosed she told me: " the most important thing is to keep your mind on your purpose for being alive."

So I guess my life's purpose is blowing raspberries on the bellies of little kids!

I send you a hug!!!

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy; Lumpectomy (Left) Radiation Therapy 2/10/2019 Whole breast: Breast, Lymph nodes
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Jan 6, 2020 07:45AM mountainmia wrote:

SB, that's one of the best responses ever. Thanks for sharing your perspectives on this hard question.

blah, all of us, if we're honest, have moments of melodramatic worst-case-scenario thinking. I don't have a lot of good advice for you. One thing I'd say is, there is nothing to do about how you spent time in your past. It's over and you can't change it. It will help you if you can focus less on it. And you don't have control over the future, so worrying about that also isn't very helpful. EASIER SAID THAN DONE! :)

From my own experience I can tell you I got enormous help from a program called Mindfulness Based Stress Reduction, or MBSR. It is an 8-week program that helped teach me to focus on NOW. My local teaching hospital runs it here, but there are locations all over the country. I highly recommend it to everyone I know who spends time writing stories about the past and the future. The people who took the course with me dealt with a range of issues including anxiety, anger, grief, disappointment with health issues, etc. I think without exception we all had more productive thinking by the end of the 8 weeks. Here is a link to the wiki entry on it. I encourage you to see if it would help you, too.

The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Jan 6, 2020 06:28PM minustwo wrote:

Yes SB - great post. And you too Mia.

Blah - yes, as you said you're "rotting your brain". Remember a large majority of people who come to these boards for help drop off once they have benign results, or are finished with treatment and currently NED. You must look for & engage in something positive to do that is NOT related to continually researching the worst possible things that might happen. It's hard, but important.

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 6, 2020 06:41PM mitziandbubba wrote:

What MinusTwo said. I know it is hard. I started my life after diagnosis living inside a breast cancer bubble. I worked, slept, did as much exercise as I could handle, and spent every other spare second I online researching cancer, talking to survivors, etc. I came to these boards before I ever signed up to post just to read and basically scare the heck outta myself. Oh and cry. A lot.

My husband told me to please STAY OFF THE INTERNET. I had so much trouble listening but finally, I realized he was right. I only really came back to the internet post treatment.

As time went on I found myself catastrophizing less. I'm a worrier by nature so of course I still do it but I am improving. I watched The Great British Baking Show during treatment and was inspired to cook more. I'm actually a far better cook now that I was pre cancer. I got really good with makeup. I spent a lot of time writing, reading, volunteering, hiking with my dog and my husband. And of course my work (which I love) takes me away from everything. I had great fun at work this past year despite everything!

I struggle now a bit but there are not hours each day dedicated to cancer now. Now it is more like minutes unless I'm having a particularly bad day, which happens. :)

Surgery 5/9/2019 Lumpectomy: Left Surgery 5/28/2019 Lymph node removal: Sentinel Dx IDC, Left, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- Radiation Therapy Whole breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 6, 2020 08:20PM trishyla wrote:

I'm not sure where you're getting your information about survival rates, but what you've quoted seem to be for stage IV cancer. Your stats show you at stage 0, technically not even a cancer. A pre cancer, if you will.

I think if you were to look at survival rates for stage 0 dcis you'd probably find almost a 100% 10 year survival rate, and about a 99% 20 year survival rate, and about a 90+% 30 year survival rate.

It's crappy that you have to deal with any of this at such a young age. My mother was 28 when she was diagnosed with uterine cancer. Boom, full hysterectomy and instant menopause at 28. It took her many years to get to a point where she stopped thinking about cancer every day. But she did. And she watched her daughters grow up, get married, have careers. She also got to watch her grandchildren grow up, and even got to know her great-grandson. It may not seem like it right now, but It is possible to live a long, full life after a cancer diagnosis.

I know it's hard. That damned cancer radio blares at full blast sometimes. The only thing you can do is what Santabarbarian suggested. Find those things that mute the volume. Volunteer, start a new career, love someone with all your heart.

Don't give up, sweetie. Just keep trying. It may take a while, but eventually you will find your place in this world.

Good luck to you. Keep us posted, okay?


Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal; Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): DIEP flap; Reconstruction (Right): DIEP flap Chemotherapy 8/4/2017 Xeloda (capecitabine)
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Jan 6, 2020 08:24PM Siciliana wrote:

Santabarbara, thanks for that excellent post! I love that you "grandmothering" those kids of your friend. How blessed you ALL are to have that experience!

Dx 12/19/2016, ILC, Right, 1cm, Stage IIA, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 2/23/2017 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy 6/3/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole breast: Breast, Lymph nodes
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Jan 6, 2020 09:20PM - edited Jan 8, 2020 08:35PM by EuroAmerican

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Jan 6, 2020 10:53PM - edited Jan 6, 2020 10:58PM by blah333

Trishyla this post is about possibly having a recurrence - not my original diagnosis. If my recurrence is in my chest wall that would put me at Stage IIIB or IIIC or IV. In my post I talk about reading the boards and how I see a lot of people in their footers jump from DCIS to Stage II to IV in just a few years. (Or even just DCIS to IV). I was remarking that I thought survival rates were better in general for later stage cancers. Based on how cancer organizations present breast cancer, you'd think outlooks have come leaps and bounds - but that's only true for early stages. Stage 3 and 4, prognosis is much worse than I expected. I even hear people say "you can live a long time with Stage IV" but 10 years seems lucky. As someone younger with breast cancer history, this is very dismal to me. I already know my supposed odds for DCIS but these repeat biopsies make me feel much less hopeful. I am pretty sure the 20 year survival rate for DCIS is not 99%... Of course these boards make recurrences seem more common than they are. I wonder what the REAL recurrence rate after mastectomy is. The 1-2% figure seems inaccurate and too low. I remember seeing my Tyrer-Cuzick score that assesses breast cancer risk AFTER my mastectomy and it was still like 35%? Removing both breasts only lowered my risk by 10% and I'm still more than 2x likely to get it than the average women who still has breasts? wow, depressing. (not putting tons of stock in that though, but I have to see this number on every clinician notes thing any time I have a radiology appointment).

Sorry to be a bummer. I just wanted to make a thread where people could deal with these tendencies to go on a downward doom spiral of thought. It doesn't help that I will have to wait probably 2-4 weeks to figure out what is going on! Eventually I do get tired of reading. I've already scrolled through all the posts (I did not read them all) In the "scared of recurrence" and "2nd or 3rd cancers" sections and am now scrolling through the "just diagnosed with recurrence" topics - after that I will have nothing more to read!

I don't think reading about it is making me sicker, but the stress feeling a bump and after hearing "CT scan" "it feels deeper, closer to the chest wall" - I got a cold the day after my appointment for the referral. My mom was diagnosed with DCIS 5 years before me. I didn't worry at the time because I was very healthy (still am but my diet declined slightly due to lack of money and a ..fuck it doesn't matter attitude though still healthy) and active, my thinking was "positive' "It won't get ME" yet making the right choices and thinking that way didn't save me. So I don't believe my worries will create a bad diagnosis either. But I do need to be more productive, especially if I'm "gonna die soon" lol. Or at least do an "early spring cleaning" for myself to make the next few months easier. I wish I could be energized by adversity like I used to but I've been pressed down for some time.

santabarbarian - thanks for your comments. I was a literature major and will never forget the definition of a hero by F Scott Fitzgerald as "being able to hold two opposing ideas in one's mind, and still act." This is what every BC survivor has to do. It IS hard.... hence, heroic. This is interesting and useful to me... suppose I need to get more creative about this. I definitely need more nourishment/help of this kind from books/films. Though last year when I needed a biopsy I was obssessed with reading journals by people who knew they were going to die or had an ailment that would mean premature death. I am so morbid lol. Maybe it's astrology's fault though, I have a lot of planets in the 8th house.

Regarding trying to live a meaningful life, I supposed I've been kinder to others, and helpful. I feel like if I'm "a waste" maybe I can at least give little pieces to other people to make their lives better OR at least express gratitude (via gifts or acts of service) to people who have helped me so those people do know that they mean something to me and I appreciate them.

Age 35 at diagnosis Dx 9/2017, DCIS, Left, 6cm+, Stage 0, 0/2 nodes, ER+/PR+ Surgery 11/30/2017 Mastectomy; Mastectomy (Left); Mastectomy (Right)
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Jan 7, 2020 05:18AM mountainmia wrote:

blah, do you have an appt to get that lump checked? When is it? You haven't really made that clear. It's really really normal to have a freak-out while you're waiting for information. If you feel freaked out all the time, please get some help for it. Speak with a therapist or talk to your doc about an anxiety medicine, and/or find other ways to manage the stress like exercising more, attending more live music events, etc.

Good luck.

The rain comes and the rain goes, but the mountain remains. I am the mountain.

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