Anyone else feel good, like they don't have cancer?
Don't get me wrong, I know I do, I felt the lump and saw the breast and bone biopsy results but I feel fine, always have. I've been very lucky to have completed my first year and treatments with minimal SE's but I often feel guilty that so many others of varying stages struggle, it isn't what I expected when diagnosed stage IV and I am confused by it. I know it can all change quickly and am thankful for my current state but it's all just so unfair. Are there others out there who feel good, normal and dare I say, happy, most of the time?
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Yes, I feel petty normal and my life chugs along in that manner.Love my job, kids, grandkids etc. Where we differ is that I don't feel guilty at all. I did nothing to get bc and I have done nothing special to keep it at bay. What I do feel is simply lucky! However, I wish I knew why I have been NED for 6+ years so it might help others.
Enjoy each and every day and don't feel guilty (both getting bc and feeling well jeered beyond your control) because it can all change in a heartbeat.
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Exbrnxgrl, I'm glad you're doing well and thank you. While I don't feel guilty about getting BC, I have a hard time seeing others in pain, I've always been very upset by the hurt others endure, medical or otherwise.
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Illimae, this post makes me happy!. I am glad you are feeling so well. I am feeling a little run down from a sore throat and low blood counts but most of the time I feel like I did pre cancer. I find myself thinking 'well, I will be that small percentage that will die from something else a long, long time from now.' Realistic or not it keeps me happy. My troubles have been minimal really and I am thankful for that. I do need to get myself out to exercise more though. I just hate the cold and the dark. I find myself wanting to throw on PJ's and curl up on the couch when I get home from work and it is already dark. I really wish I lived in a warm place in the winter. Love my Michigan summers though!
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"...I'm glad you're doing well and thank you. While I don't feel guilty about getting BC, I have a hard time seeing others in pain, I've always been very upset by the hurt others endure, medical or otherwise."
Yes, it is painful to see others struggling and the havoc bc brings to people's lives. I feel that too, but that is a very different thing than guilt. May those of us who can continue to live well. May those who are suffering find relief, peace and comfort. And for all of us, may there be a cure soon.
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Hi illimae - oh yes I have felt exactly how you feel. I was diagnosed de novo as you were but I did not have any surgery or chemo. So you've been through a hell of lot more than I have. My first line of treatment was Tamoxifen and it was a cake walk. It was extremely surreal. Here I was with a terminal disease and yet I looked great. I had all my hair, still had my breasts (and the tumor) and for the most part felt pretty darn good. I was working full time, still commuting and even going to the gym. It was very difficult to read the posts of other stage iv folks who were in pain, experiencing progression, lost their hair and had surgeries. I would cry from some of the posts I was reading. I felt like a fraud and I didn't want to post any comments so I just lurked. I even stepped away from the boards for a while because I felt like I didn't belong and I felt guilty that I was doing so well. But even just lurking - you get to know the wonderful people on these boards and the support, love, understanding and knowledge was very compelling. I had to keep checking in and then I realized if I didn't check in often I wouldn't be able to keep up with everyone. The threads were very active and so much was happening. I started to contribute posts little by little when I had something to offer. But I still felt guilty. Even when I had minor progression in my spine and had to change treatments to Ibrance/Letrozole I was still doing really well. I was Julie from the Ibrance commercial that everyone hates. But then it hit me - when I first joined BCO I was desperate to read posts from people who were not in pain, not progressing and tolerating side effects well. I wanted to hear that people can do well for a long time. There had to be people just like me lurking who were looking for those same positive experiences. Every once in a while someone would post good test results or other good news and the reaction from the community was overwhelmingly positive. Everyone is genuinely happy to hear good news! So that gave me the courage to post more often with good news of stable results and manageable side effects and it felt good to give other people hope. It was not only encouraging for those who were lurking and feeling "guilty" but it was also uplifiting for those who were having a hard time. With that said - my honeymoon period may be coming to an end. A year ago I had progession to my liver but I'm pretty asymptomatic. I moved on to my third line of treatment which was a clinical trial that I have just left due to the side effects and I am contemplating the next treatment. I just had CT scans on Thursday and will have a bone scan Monday. Meeting with my Oncologist Monday to discuss the options. I'm 3.5 years out from diagnosis and I may not be as "happy" as I was a year ago but I've made adjustments (work from home now, no gym) and I'm still pretty happy and feeling well and NOT FEELING GUILTY.
The bottom line is don't feel bad and don't feel guilty for feeling good. Feel good. Feel Happy. Live life to its fullest. Enjoy everything! You deserve it!
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animalcrackers, thank you for sharing your story and I'm sorry about your progression but glad you're still feeling good. Mets were recently discovered in my brain but my MO suspects the cell migrated up there pre-chemo and for now they're small, few and being treated. I know further progression is in my future but thought I'd be feeling much worse by now. I feel very lucky and by nature I want to know how, why, when but I guess I should dwell on that less and just focus on what keeps me feeling good
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Me too. Yeah I get fatigued, but really life just goes on as it has always done. I don't have any great pains other than the normal cricks and creaks of aging. I just don't feel my pending demise when it comes is any big deal.
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All, it's great to hear from you all, I was feeling like a bit of a freak in this community, lol
Lego, it's funny, after a year of various treatments, the thing I despised the most was those darn surgical drains, oh man, I hated that!
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illimae,
I promise I will say hi to you more often.
For me, the most annoying thing was chin hair due to hormonal imbalance from chemo. I had to shave weekly. After hystrectomy, chin hair gone forever. (I have not had to shave at least three weeks now) Drains, chemos, rads and emotional pains combined did not bother me no where near what my unwanted stubbles did. Go figure.
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A tiny bit off topic, but has anyone ever questioned your dx because you didn't "look sick" ?
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No one has questioned me, probably because I've been bald most of the year. Herceptin and Perjeta slow hair growth and I didn't like wigs or scarfs, I'm only beginning to get to a point where someone might think my hair is a choice, lol. I'll probably have my first hair cut after the holiday
Castingame, hi back and oh yes, cancer treatment gives us so many new delightful gifts, glad that's over now.
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I have exbrnexgirl. I keep waiting for them to say oops we made a mistake, wrong person. Lol. I know it's not true especially after a year of treatment but that would be great to hear. I wouldn't even be mad.
Illimae, I remember your drain saga. You were the queen of the drains that is for sure. Those things were such a pain and I only had them in a short while.
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We always can use more positive posts, it’s great to know some of us actually have minimal SE. one of my friend has lymph node cancer and he is doing chemo and he only has rashes SE. So we do have some people are so blessed by God. We are happy to know.
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I feel good and sometimes wonder if all this was just a terrible nightmare. I know that it could all change in a blink of an eye, so I soak it all up and try to live in the moment. I had the classic (aka Hollywood) bald chemo look! So did look 'sick', but even then didn't feel that sick.
I feel for those who are in pain from cancer or those with severe AI/Tam side effects and consider myself fortunate to have it fairly easy with Zol & Tam. With my high risk profile, I would be terrified if I had to quit. So far I feel in charge, but aware that it could change in a second, side effects appear out of nowhere, etc.
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I am so glad someone started this thread. I thought I was the only one who had thoughts about how unreal this whole BC thing seems. Shortly before I was diagnosed, I told a friend about how great I felt. I didn't have sore muscles, no headaches, lots of energy, and a great mental attitude. I had no lumps or bumps. My doctor told me it was time for the usual mammogram and blood tests so I scheduled them. Shortly after that I was diagnosed with BC and told I would need chemo, radiation, etc. When they showed me the x-rays, I asked the doctor if those were really MY x-rays. After the lumpectomy and lymph node removal, I still wondered if all this was really necessary. As I went through chemo (I'm still in the middle of chemo), I'm still having thoughts that none of this is necessary and that maybe Big Pharma is just trying to make money off of us by making us fear cancer. HOW NUTS AM I TO EVEN HAVE THOUGHTS LIKE THAT? Well, anyway, I'll just leave this post here and blame my conspiracy theories on Chemo Brain. LOL.
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Meg, they're only "theories" until they're proven. I was so ignorant to cancer but I'm learning new stuff every day. When I was told I had cancer, I thought I was going to die but I felt good, it was weird. When I was confirmed stage IV from the scans, I was sure I would die quickly but I didn't and when brain mets were discovered last month, I thought, oh shit, this is it but I still don't feel like it.
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I cannot believe that I have Stage 4 breast cancer. I am never ill, very fit, live well and am happy and healthy. My bone mets were an incidental finding, they have not caused me any problems at all.
The treatments on the other hand have made me very ill. There are days when I wish that I’d never found out about the mets.
On a positive note I am in a good place and my mets are sleepy, long may this last. I have no intention of letting this diagnosis take over my life, I am grateful for every single day and am at peace with myself, corny but very true
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Hi illimae - Very interesting. You went through all the recommended treatments, yet the cancer still spread. In fact, the cancer spread quickly. Yet you still feel great. Do your doctors have any idea why this is happening to you or why the treatments aren't working? I'm curious about your case. Has your medical team discussed "immunotherapy" with you? I've read it actually works. In fact, it not only works for BC, but many other cancers such as bladder cancer, melanoma and lung cancers, etc. It's not alternative medicine. It uses your own immune system to kill cancer cells. There is a good article about it in the October 2017 issue of Web MD. Hopefully you can read it online. If not, I'll be happy to mail it to you.
It's terrible you are going through this. I love your positive attitude and great sense of humor. And again, I'm glad you started this thread.
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Meg, the docs and medications have worked well actually, I'll clarify. I was diagnosed last year after suddenly developing a large lump, initial staging scans revealed a met to my hip bone but I had no symptoms of that. I was considered oligometastic and treated with curative intent due to the minimal spread, neoadjuvant chemo, surgery and radiation. Brain mets were discovered last month due to a lucky unrelated migraine (unrelated because they weren't located where my migraine was and were too small to cause they're own symptoms). Subsequent scans revealed that my bone met was healing and no evidence of active cancer was found elsewhere in my body. My MO and I believe that some cancer cells made their way up to my brain after initial staging but before chemo and grew slowly. Since chemo doesn't cross the brain blood barrier, it worked well on my body but not the brain. So, it wasn't really progression, it was there at just the right time to avoid being found earlier. My post gamma knife MRI shows decreasing brain lesions and nothing new. As bad as it seems, I am still very fortunate.
No plans for changing or adding treatments at this time, since the standard is working so far, I will check out the article though, I try to be fully involved and current in cancer news.
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I often feel guilty for feeling good. For not having had to have chemo or rads. Surgery and hormonal therapy only. I tell very few people that I had bc. I work in a school and this occurred during the summer and I was back at school come September. I think people would say oh, you don't look like you have/had it. A co-worker has been out since May, she is a teacher, with breast cancer and thyroid cancer. Chemo, surgery the whole thing. She came back in Nov. I really hesitated to tell her I have BC because I did not go through what most of you women have to. Feel like she would not thing I could understand. I cant in relation to going through chemo, but i can mentally an physically in a diff way.
My gyno told me when I mentioned this to him, that I did not ask to have BC, the type of BC, the stage or the treatment. It's cancer.
I still feel bad for feeling pretty good.
Hugs...
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Beach2beach, we all experience the shock of being told we have cancer, regardless of stage or treatments. Glad you’re feeling good!
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Counting my blessings. I can walk miles and miles now. I am seriously thinking of going back to swimming pool. I am still 10 pound plus lighter than pre chemo. All clothes fit loose and I am ready to do some serious shopping after Christmas.
I almost forget I had this crap until I see either cancer related commericials or baby commercials. Wish there is some way do block those. Wishful thinking I know.
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In the beginning, when I was first diagnosed which is only just over 2 months ago, I went into some extremely dark places, hoping that someone would collide into my car and kill me outright. Before my diagnosis I felt well. And even afterward I feel well. Now I know pretty much what I am dealing with, the dark places have subsided somewhat. Physically I feel fine and ok, but I've had some pain in my left breast where the cancer is. Sometimes quite sharp pains. When I had my first chemo, I felt unwell for around 5 days after and since have felt very well with minimal side effects. Yes I have side effects but I'll be honest, I think my side effects have been easy compared to some. I am due my second chemo tomorrow, whether it'll be accumulative for me I don't know.
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Good for you pomegranate, getting settled mentally is so helpful and I always recommend walking during treatment if you can. The physical and mental benefits have been huge for me.
I hope you have an easy chemo and bounce back quickly.
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Physically - I feel Good. I'm working out - lots and am in very good physical shape.
But, struggling more this year, emotionally, than last year. At my last onc apt, MO wants to do tumor markers - at my next follow-up - in March. I'm already terrified of this - I think - because I feel so good (physically) that I can't imagine having Mets (and, honestly, don't want to know - either!).
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Scared ..my BS does my tumor markers ..and I HATE it too !!!!
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Scared and Lucy, I get it my MO just stated TM’s too. Perhaps, it is less scary for me though since I was Stage IV with a bone met from the beginning. At the time, my big fear was it spreading to the brain, which we discovered it had in October, my TM’s were 12, now 15 but still well within the normal range. I still feel good though, so fear has become less. I’ve been trying to focus more on what my body tells me, not my mind.
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I'm curious. What are the exact tests they run foryour tumor markers? I asked my MO if we do any bloodwork to monitor potential activity and he said no, we just wait for symptoms. That seems kind of stupid to me to just wait, although it seems common too. I would prefer to be proactive.
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LEGO, the blood work usually done are the CA 15-3 or CA 29 something. Other things can affect them, so progression is confirmed with scans. Also, if I understand correctly they measure the amount of cancer cells in your blood, so it’s doubtful it would be considered unless you had positive node involvement. My MO at MDA didn’t use the test until we found the brain mets.
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Thanks Illimae. I did have at least one positive node that was negative after preadjuvent chemo. I'm going to at least mention it to him again. A blood test seems like a reasonable method to monitor things even if it is not foolproof. I just struggle with waiting for symptoms to appear.
Glad to see you doing well. I'm going to be happy to see this year come to a close and start a fresh new one on a positive note
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