I was diagnosed with BC six days ago and I am looking for a safe place to vent, gather information, and find support. I thought I was safe from any cancer given past genetic testing but also because both my mom and maternal grandmother died from C in their early 50's. I passed both their ages of death and took a sigh of relief. Not so fast! I am just starting this process so I would like to connect with others going through the same thing. I start chemo in 2 weeks for 5.5 months, then surgery, radiation, and then medication. It's all very overwhelming.
So, Hi everyone. I hope to connect with anyone who is willing to chat with a terrified newbie.
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CarpeDiem2024
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Is your cancer metastatic? This site is for metastatic only and I only say this because our treatments will likely be very different from yours if you have “regular “ BC. At any rate, get your head around the diagnosis as best you can. Lean on those close to you and try not to panic. If there was ever a good time to have cancer (ugh), this is it. New procedures and medicines are coming out all the time and hopefully this will all be a distant memory very soon!!! I hope so!! Good luck to you. If you are not metastatic, I’m sure there are forums for that too.
I'm assuming that it's metastatic if I'm going through 4 different treatments. So maybe I don't understand what you're asking by saying "This site is for metastatic only." That sounds like I'm not included before I even know what I'm dealing with. I just met with my team and don't know what to ask or how to respond to your question. I'm terrified of losing my life and I'm reaching out for support here.
Has your cancer moved to a different organ or bones, or is it still contained in the original tumor? If it has moved, then it is metastatic. I only ask because treatments can be very different for metastatic than for regular breast cancer which is still contained to the original tumor. Everyone here is metastatic, for which there is no cure, and the conversation and treatments discussed are in that vein. You might be better served in another forum if you are not metastatic. If you are, welcome. Even though it’s a club no one wants to belong to. Everyone is very supportive here. First thing to do is don’t panic! Easier said than done, but anxiety is not your friend. Listen to your doctors, take notes to help you remember and read up on your particular type of cancer. Being informed will help you understand and/or question what your treatment is or what options you may have. You need to be your own advocate because the medical community still doesn’t always do the best for the patient. Ask questions! Good luck!
Greetings Sister, and yesssss Warrior😇. I am sooo sorry that I don't come on this site as often as I use to, but I just saw your post. I am sooo sorry you were told this site is for Metastatic BC only😳. A couple of years ago there were females on this site saying this site was only for those who were currently fighting cancer, and also saying that care givers of cancer patients were not welcome on this site🙁. Shame If you ever need to message me I am here, but I don't always check my e-mails as you can see🙃. I was diagnosed incorrectly as benign breast cancer in 2006, with a visible lump. Well in 2007 I was correctly diagnosed with Triple negative MBC then with 2 visible lumps. Well I was told after aggressive chemo, and radiation that I would not live to see 2008.😳 I thought okay here or heaven. I (stand here/sit here) talking/typing this message to you. I prepared for my physical death, but I believe the GOD I serve has let me live now almost 15 years after treatment with no prescription medications😇. I pray all will be well for you, and that your treatment will kick c's booty right out of your temple as you navigate this journey to wellness😇. Sister/yesssss Warrior stay strong, and have faith Amen
You will be feeling panicky - it’s a normal phase of trying to readjust to a major ‘ life ‘ change. The good news is that there are so many meds and treatments now that help even those of us with aggressive metastatic disease live almost normal lives for many years (albeit with more scans, tests, meds and a few side effects hopefully manageable. Seen from the other side ie 2 years on from diagnosis, I’m almost zen about it now - well-until I get progression- and even then, hopefully will be more confident. Baby steps for you as you adjust and begin to unfurl and emerge into your new self - like a chrysalis turning into a beautiful butterfly.
I'm in bed trying to sleep and I read your reply. Thank you for your kind words and support. I know my life has now changed and my focus is on my health 100%. I'm trying to stay strong for the people who love me, but I'm learning that I'm going to "lose" it soon. I've not cried about my diagnosis until tonight. I became very angry. Thank you for responding to me. I truly need support and of course will give it in return as I go through my treatment plan, which includes chemo for 5.5 months, radiation every day for months, surgery and medication. I'm starting with the scans this week.
I am so very sorry you are going through this. It is scary and life changing and can be very overwhelming. I hope that you have a good support system to get you through this, that is important. It also is important to have good nutrition and to strengthen your mind, body and spirit with exercise when you can, meditation and positive thoughts. As best as you can, you have to tell yourself that you can do this, that you can survive this storm. I hope everything will go well for you, but please know that I am sending you hugs and prayers as you begin this journey. You are not alone.
I was diagnosed with metastatic breast cancer in March, 2004, just over 19 years ago. Bone mets only. I'm still here and well enough to be here, still enjoying family, friends, dogs and cats....... and there are alot more treatment options than whe n I was first diagnosed. And I've gotten past the initial fears about this lousy rotten cancer! But most of us are pretty scared at first. Meeting others with similar cancer, learning all I could and responding well to treatment all helped alot. If you tell us more about the cancer you have, we can likely give you more about our cancer journeys. For example, is the cancer estrogen receptor positive or negative, progesterone receptor + or -, her2neu + or -. What stage is the cancer? If you are in the US, the top cancer centers are those designated "Comprehensive Cancer Centers". Those have very specialized oncologists, who treat only breast cancer for example. Getting a second opinion about treatment at one of these places is a good idea and your own onc should support that! CCCs are listed on the website of the National Cancer Institute. There are about 50 of them. Good luck to you. There is much to be hopeful about!
It is so great to read your story here PJBinMI!! Would you please share the treatment that you have had from the beginning? I only have bone mets too which have been shrinking or stable for 4 years...praise God!!! My last scan in April may have shown first progression...though I have resson to believe that my tailbone showed up on scan due to a recent reinjury after a break 7 years ago (yrs before diagnosis). I have follow up oncologist appt tomorrow after my new doc took my case to a tumor board for more counsel. I have been blessed with very good results on Tamoxifen with few and mild side effects. I don't want to have to switch to a medicine with bad side effects.
Happy New Year PJ… and everyone. You n others gave me good advice when I was first diagnosed 2022 with MBC. I am coming up on 2 years. Meds are working. My blood work numbers go up n down. N I have had IV hydration a few times. N my surgery (ovaries n Tubes removed) n you n everyone that replied to me gave me HOPE.
Sounds like a great plan! Catching the cancer early will mean more aggressive treatments than those of us diagnosed de novo at stage four. There will be plenty of people here who have gone through early cancer before MBC but treatment is different and it’s likely to be different to treatment for early cancer twenty years ago too.
Since you’ve caught your cancer early you have a very good chance of complete remission at the end of your treatment plan.
I had 6 months of Abraxane which is an old fashioned IV treatment and aside from hair loss, I didn’t have any problems. A cautionary note though - my cancer isn’t curable. Yours is, and doctors practically throw everything at early cancer, except the kitchen sink, so you might have a far different experience to mine and others too.
You might find it easier to stay strong if you have a good cry first. Or a few good cries. And when I say good cry, I don’t mean 😢 I mean howling at the moon like a wolf crying. I recommend doing it in the shower. It’s private, running water helps mask the noise you’re making and you can wash all the evidence away. I can say from personal experience that no one will question you about it which is a good thing. It’s like ugly crying but uglier. And louder. But it’s very cathartic. I’ve forgotten which chemicals it releases but if I find out from Dr Google I’ll edit this post.
There’s plenty of time to be strong but there’s also a time to cry. And that’s when you’re diagnosed. It might take a couple of weeks to cry yourself out but it makes it a lot easier to put on a brave face once you have. And in time you won’t have to put on a brave face because you will be brave without effort.
A bc dx is terrifying but it sounds like your onc has a good plan for you. Keep yourself strong. Eat well, drink alot of water and exercise so your body can handle the treatments. There are so many new drugs available which are extremely effective. I hope you reach remission soon! Sending hugs and love!
Hello CarpeDiem, I join others here in extending so much sympathy and support for what you must be feeling right now. For many people, the time right after diagnosis is the hardest part of the breast cancer experience. It’s shocking, scary, destabilizing, and confusing as you try to navigate a lot of very new and technical information as your world feels like it’s been turned upside down. Although it’s really hard, try not to panic. There are great experts and treatments that can help you through this. And connecting with others who are navigating that journey (like this or other groups) can be really helpful in finding both specific info on treatments, and more general hope and reassurance.
As others have said, if you’ve been diagnosed with stage 4 metastatic breast cancer, this group is a great resource! However if you’ve been diagnosed at stage 1, 2 or 3 it’s best to find a regular breast cancer group as the treatments and outlook are different.
To recap my advice for newly-diagnosed people is:
— Don’t panic.
— Find a doctor you trust, ideally in a highly-rated cancer center.
— Be kind to yourself. Reach out for support to loved ones and support groups, when you feel ready.
— Learn about your diagnosis and treatment options, in a way that helps you feel informed but not overwhelmed
— Recognize that this will be a marathon not a sprint, but you can just do your best one step at a time
The women on this site are very, very wise. I've read the earlier replies and once again they have come through sharing their wisdom. I remember when my oncologist confirmed that I had stage IV breast cancer. I saw her talking and heard the words but it just didn't register. For the first couple of months it was all I could do to function day to day. But, slowly it does get better. Soon you will find strength, hope and optimism about your future. Keep in touch with us and be patient and kind to yourself.
I don't think you need to put pressure on yourself to be strong. You certainly have profound feelings to process. However, knowledge is power. The more you learn about your particular cancer, the better you'll understand your treatment options. The more you know, the better you can advocate for yourself, and guess what... the stronger you will be.
A couple of bits of advice: Keep a notebook of questions or put it on an app in your phone or computer. I often email my questions ahead of my dr appointments. I highly recommend that. Bring a trusted friend, relative, or partner to every cancer related appointment. It is sometimes hard to process what the doctor tells you during an appointment because of the emotions. Your support person can be an extra set of ears. During your treatment, try to live in the moment and do the things that make you you. During chemo, don't eat your favorite foods - chemo may change the way you taste them and you will want to enjoy them when you recover.
Dear Carpe Diem, first, I send you loving support and hugs from England. We will help you find your way.My biggest suggestion is to buy the following two books :
Radical Remission, by Kelly Turner PhD - - research into over 1000 cases of people who survived stage IV cancer, and the things they did in common.
The Blue Zones Kitchen, by Dan Buettner - - an approach to eating that is practised by centenarians around the world. This is a joyous book, with fabulous recipes and photos, telling anecdotes about real people who live exceptionally long lives. Whenever I feel down, I turn to this book for pure joy and inspiration. And the nutritional advice is non-moralistic, simply sensible and joyful.
Thanks for sharing!! Chris Wark of Chris Beat Cancer, his book, has done much research about and has a testimony that matches of healing through nutrition immersion and all healthy lifestyle changes.
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