Life does not end with a stage IV diagnosis (really!)
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Rosieo...I was originally diagnosed 3A TN in September 2013. Following bi-lateral, chemo and radiation I was declared cancer free. In April a Bone Scan and CT Scan were done. Bone scan was clean but CT scan showed that I had pulmonary embolism in my lung and also a 1.4 cm lung nodule. PET scan showed that lung nodule was cancer. So was diagnosed with mets (stage IV) on May 1st of this year. I had a 1.4 cm met in my lower right lung, 2 chest lymph node mets under .5 mm and 1 met on my sternum also under .5mm. Within 8 weeks of Taxol the 1.4 cm met in my lung had shrunk in half and the 2 chest nodes were gone. 8 weeks later with my last CT I was declared NED "No evidence of disease", which is the same as complete remission. I will stay on Taxol because we know that my cancer will come back without chemo. Not sure if my ONC is going to reduce the dose eventually...but for now will stay on the 3 weeks on 1 week off routine!
I feel great...I am lucky to not have any other side effects other than the hair loss. No nausea or constipation. No issue with my nails (I still get my mani/pedi every other week). My energy level seems fine, I am able to continue to work full time (10 hour days) and I do walk on my treadmill 5 days a week for 2.5 miles. Life is Good!!
Hang in there!! You can get through this. Try and keep a positive attitude. We all have our down days (believe me I had several), that is expected!
Julie
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Texas, I find your story a true inspiration. I have been doing a lot of reading, but hardly ever post. I'm newbie and don't have any knowledge or helpful stories for anybody. I see my onc today, and hopefully I can get started on a treatment plan. I expected to be told yesterday what the plan was for me. But a nurse just called and said I was a conundrum..... I have contemplated the meaning of her words since I hung up, no sleep for me!!!! When will I feel like I'm not in a dark scary tunnel? I want to move forward!!!!
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Chelle: the unknowns before you have a treatment plan are the most stressful. Once you have a plan in place it is easier to follow the steps. Hang in there.
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Chelle...Bluefrog is right. In the beginning it seems like everything is a mad house and a scary tunnel! But after a few of treatments it all falls into place. Ditto to the Hang In There!
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Good Housekeeping is running the following article in its October issue:
Facing Cancer With a Plan for the Future
Lynda Huba may have Stage IV cancer, but you'd never know it. Thanks to targeted HR+, HER2+ therapies, she is done with chemo, back at work and planning a family.
http://www.goodhousekeeping.com/health/a34394/brea...
She speaks about living with Stage IV as living with a chronic but treatable disease.
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thank you blue and Texas! Today should be the end of the beginning! I can't imagine them doing any more diagnostic tests. I have had every test known to man. They did a bone biopsy to confirm the mets last week. I really just want to get the ball rolling. When I told my bf about the nurse saying I was a conundrum, she implied that maybe the bone cancer was a totally separate cancer. Is that even possible? I was up all night contemplating that and every other dark scenario. Today needs to be over with!!!! I will defiantly post when I get home and settled. Appointment is 2:30 mst. I thank all of you strong ladies from the deepest part of my heart!! You give me hope, strength and a feeling of companionship that I can not find any where else
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Scrunchthecat, I wrote on the GH FB page. That article is totally irresponsible and reckless. Pretty sure at 30 years old when someone is diagnosed with diabetes the doctor doesn't give them a 5 year prognosis....
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Chelle,
I'll be thinking of you today. Soon you will see the forest through the trees!
xo
Rose.
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Scrunchthecat. Thanks for posting that love the comparison to diabetes another awful disease that takes way to many to young. That gives me hope and I love that this magazine is seeing the shift. I didn't find it irresponsible it's good Housekeeping so we need to keep,that in mind. I liked that they gave hope and that's never wrong.
Chelle I will be thinking of you today I have my week next week . I have known now for three months it gets easier . It's such an awful dark lonely place at the beginning I know. But surround yourself with positive people and loved ones and happy things. So many scientific break throughs happen everyday.
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TXMom and Wendy3 - I think the diabetes analogy is not a great one. I think of Stage IV breast cancer more like HIV. Twenty-five years ago, HIV was a death sentence, now - thanks to the activism of people who were diagnosed with HIV, their caregivers and doctors - HIV is a chronic but treatable illness. I recommend to everyone the documentary "How to Survive a Plague," which shows how HIV/AIDS became a survivable condition. "How to Survive a Plague" is available on Netflix.
sj
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Scrunch, I agree with you on the HIV comparison and hopefully through activism, funding, and research MBC will get to where HIV is however articles like the one in GH don't help. It's very misleading regardless what kind of magazine it is.
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Okay I can agree with the HIV comparison instead of diabetes. I will check out that documentary though I don't think we have it on the Canadian netflix.
I'm just happy ey are comparing it to anything rather then leaving it on the high pedestal of scaries worst disease.
This thread is supposed to give hope and anything that makes me less afraid is a good thing.
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Hi all,
I didn't read the GH article; too lazy. But my MO keeps telling me that Stage IV BC is rapidly becoming a manageable chronic condition - similar to HIV or diabetes. His analogy with diabetes is that you need to manage the disease by taking care of yourself and taking your meds, and while it can result in early death, many people live long lives with the disease.
I just read the NY Times article posted on the bone mets thread; it's truly inspirational. And it's something that Caryn and I have been discussing here - maybe they need to look at some longer term survivors and see why that's happening. I know that's one of the research pathways they followed with AIDS - some people just didn't get sick. I was excited to see that Susan Love is looking into it. I read a post on one of the threads here a few months ago and it was from a 20 year Stage IV survivor.
For me though, the takeaway message from the NY Times article was her statement "There's no such thing as false hope; all hope is valid". So here's to very valid hope.
Sending hugs,
Terre
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Terre thanks I will definitely check out that article.
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I think this article was a bit simplistic and one sided. Although I do agree with Wendy that we could all use all the positive encouragement we can get, I would like to see an in depth articles put out there to help the general public understand just how challenging emotionally and mentally this disease can be even if we are physically doing fine. I feel that for the most part people around me are trying to be compassionate and understanding but they still just do not get what it is like to walk in my shoes. I do not want to be treated like I am a deathly ill patient, I do not want to be questioned every day for symptoms, I don't need to be reminded that I should jump on cheap airline tickets NOW for Hawaii or start training someone new for my job! I don't need anymore organic vege trays, flowers, essential oils, or latest books on cancer left on my desk. Which has all happened so far...... I just need to feel every day that I can go into work and be my normal self and know the offer of help is there when and if that time comes. Phew sorry, it was a weird day for all that but feeling fine otherwise!
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Artist - I so totally hear you! It does get better over time as people adjust. I was so angry when I was first dx with Stage IV - friends from the US who had basically ignored me since I moved to NZ suddenly wanted to visit "before it was too late." They didn't give a toss about what I wanted, only what they needed to make them feel less guilty. And everyone had advice. And sent unwanted stuff. And chastised me when they thought I wasn't doing what they thought I should do. And told I should quit my job and "spend my time at home" until I die (this from my manager).
I pretty much learned to smile politely and ignore them like my mother taught me to do.
It is rough - wanting to have it acknowledged that you have mental and emotional burdens (and some physical ones too), but not wanting to be wrapped in cotton wool and put on a shelf. And not wanting to be told what to do.
I think Holley Kitchen's video is one of the best things I've seen out there that helps get across what we deal with, but there should be more.
Sending hugs and hopes for a better day tomorrow!
Terre
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Artist and Kiwi, you both took the words out of my mouth! Especially when you speak of just wanting to go to work and be normal, and the part about being chastised when you don't do what people tell you THEY think you should do!
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Ha, ha, buy those cheap tickets to Hawaii. Yeah, like we all spent our lives being totally miserable until bc showed us the light. The truth is, there were many parts of my life I liked, loved and appreciated for many many years before bc. I wasn't going to chuck it all to go into some kind of unbridled free fall as if anything prior to bc had no meaning. I continued working because it was a good distraction and helped me regain some normalcy. Yes, I do some things more immediately than in the past. But a regular, routine day is a welcome thing. We shouldn't be expected to live these large lives like we are being filmed for a scripted "reality" show.0
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I like the positivity on this thread, I really do. But even though stage 4 BC is becoming a condition that more people are living with for longer periods of time, it IS still a terminal disease. I don't like when I read articles that call it a chronic condition and say its no longer terminal. WHO SAID THAT? I want the doctor that can make my stage 4 bc NOT terminal. I have great hope for the future that it may someday be possible, and with all of the new drugs and treatments, I may make it to that point. But we aren't there yet. Sorry to be a downer today, but gotta be realistic. Hopeful, but realistic.
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Finally got around to reading to reading the article. First, let me say that no one could possibly explain MBC, even one women's MBC, in such a short piece. I was taken aback by the woman saying she was treatable, not terminal. Even me, the ultimate Pollyanna, happy go lucky stage IV gal, doesn't believe that I'm not terminal (not immediately, but eventually). I am very happy for her and I hope that she is right, but we all know that, currently, the odds are not in her favor. I'm hoping to hang on long enough for that to change, as I know all of you are.
Caryn0 -
Well said, Caryn and Mrs. M!
I have posted/said this before, but it's kind of my mantra - PRO = pragmatic, realistic, and optimistic. I love that my MO keeps up with latest research and goes to international conferences and is looking forward to this being a chronic treatable condition. I hope and pray that day isn't far away. And he's also realistic and we both know that this is probably what will take my life. His goal (and mine) is to keep me stable, alive, and reasonably healthy until the "chronic disease" day comes.
At any rate, it's always a balancing act. Some days I balance better than others and despite absolutely hating my job at the moment, I'm actually feeling quite optimistic about things today. Go figure.
Mrs M - had a giggle (warped sense of humour) at the mention of reality show. Immediately thought of Survivor - Breast Cancer Edition. Or, Keeping up with the Chemotherapy. And you are so right - we only need to be true to ourselves and what we want to do, and what's important to us. I also refuse to have a "bucket list". Mine is a "to do" list. Which I've always had.
I'm not making light of our condition. Rest assured that I have some really pretty horrific dark days, but it does help me to kind of make fun of the disease. My MO said I have an FU attitude toward cancer, which is part the reason he accepted me as a patient.
Sending hugs to all,
Terre
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Wow, that was a tidy little article! Another embarrassment, hugely misleading. I'm with Caryn (that "happy-go-lucky stage iv gal":)…just hoping to hold on long enough to see real and honest happy endings for us all.
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Didn't know where to post this link, so I though I would start here:
What Peyton Manning Did For My Friend, Dying of Breast Cancer
I was touched by this story, for many reasons, but what saddens me is that her friends and family think she is dying.
I say she's living with metastatic breast cancer. She wrote 10 letters to friends, family, teachers and others she felt were significant to her.
But she only mailed one letter. To Peyton Manning. And her blessing was that she got to see the game and meet someone she admires (and I understand why she admires Peyton Manning - he's a top notch classy individual who receives many of these kinds of letters and he takes the time to respond to them personally).
I understand where those who care about us are coming from, but I'm not dying. Not yet. And neither is she. She thinks she might live for another 10 years. And we know that is possible. I'm just more aware than many people that I'm blessed and grateful to be alive.
And healthy enough to attend a Broncos game.
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Thank you Wendy, Rose, Txrose, for all of your warm hugs and well wishes! I had my appointment and have a plan. I have started tamoxifen and will soon be getting the zometa. I need to have a couple of visits with my dentist before starting the zometa. I feel better knowing that I am being treated for this. I am filled with hope!!! I must get myself to bed.hugs to all! I hope everyone has a restful night
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Terre, I know you are right about people adjusting. I have even politely mentioned to a few that I needed them to dial it down a bit. I too suddenly have a rash of "visitors" and people renting that beach house and inviting us. Yeesh......
LOL! Survivor BC Edition, you are too funny! I too am being as gracious as possible but sometimes excuse myself to shed a few "hot head tears". I will check out Holley's Kitchen soon. Divine, I agree that I am pretty happy in my normal everyday "boring" life even with Dx. Yes, I would love to have time to see some new exotic places but can't just drop everything and dash off to a new life. I love my house, my pets, my books, my hobbies, and most of all just hanging with the family.
Here's to at least 10 years for us all! Hope springs eternal!
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Great posts on this thread about MBC and living with it. I can relate to all that is being said here.
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good morning ladies...I was wondering if any of you had experience with weight loss . I mentioned I believe on another post that I'm only taking Tamoxifin at present. I can't keep any weight on. I feel like I'm disappearing. Who ever knew I would have this problem.
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Hi ladies,
I understand the blowback from The Good Housekeeping article. I guess I'm torn between wanting to change public perceptions of Stage IV cancer patients as The Walking Dead, but at the same time I get that the public could just as easily file metastatic breast cancer under Cute, Pink and Cured. I think it cuts both ways. I am a university professor, I have told my students I am undergoing treatment for breast cancer (although I have not said anything about Stage IV), and I feel that I am a spokesmodel of sorts for people with cancer, and how my students perceive them.
I am joining hundreds of other women in Washington, DC, on October 13 (Metastatic Breast Cancer Awareness Day) to demonstrate for increased funding for metastatic breast cancer research. I posted the details here. It would be great to see some of you there!
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Scrunch,
I understand what you're saying. I think many of us are treatable for longer periods of time, but this disease is most definitely terminal for the vast majority of us. I have done extremely well for over 4 years, but I harbor no illusions about the eventual outcome. Will I be in the 1-2% who make it? Of course, I would love to, but I'm not counting on it.
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Took the time to read the article. Short and does not even begin to cover the issues each of us live with. I am fortunate to have been NED for 2 years, but accept i am terminal, hopefully not in the next months or years , but no one can predict. As positive as my onc is with things in the pipeline etc. I do not anticipate being here for several more decades. I live each day, the good the bad and the ugly and appreciate each.
Nel
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