Need Your Tips for Members Newly Diagnosed Stage IV
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At first you'll be in shock and disbelief. The disbelief can be with you for a long time but this isn't a bad thing, it protects you from the frightening place you've found yourself in and, once that has worn off, you can begin to accept what's happened and work on how to create a good life in this new reality. Try not to analyse too much or think about the past and what might have caused your cancer as that is futile now. At first it's bewildering and there's a lot to learn in a short time but just take it one step at a time.
There are a lot of stages to go through before you start to realise that life can be good. I know that from where you are right now that might seem strange but, for me, having Stage IV cancer with extensive bone mets has focussed my mind to what really matters in life and the following approach has worked for me:
Write everything down....I keep a day sheet with my drugs, the time to take them and I tick them off when I take them. Make a note of any side effects. Note down everything you're told to do as at first it's too hard to remember what you're told while you're in a blur of new drugs and pain killers.
Don't blame yourself.... you did nothing wrong, this is just rotten bad luck.
Learn to be selfish.... and by that I mean learn to put yourself first....a lot of women go through life making themselves their last priority...for me getting sick has taught me that I was there for everyone but myself and that had to change.
Take it one day at a time..... don't look at the future, just take your tablets, turn up for appointments and between those times find things that make you happy and concentrate on those.
Live in the moment.... each moment is a gift.
Appreciate what you have.... don't focus on what you've lost.If you need encouragement....choose the threads applicable to your situation and call out for help. Support will come flooding in. We all care for each other and support each other. This is the place to go to when you want to say things you can't say to anyone else. We all understand how you're feeling.
This is a lot to process but, believe me, if you try to follow these steps you'll find that having cancer, frightening as the diagnosis is, doesn't have to scare you out of enjoying life.0 -
Leapfrog, This is brilliant.
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Maire thank you x
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im newly diagnosed this past week metastatic breast cancer to lymph nodes so far. I am just beginning this journey, awaiting FISH results, Port being placed friday. this thread has helped me tremendously thank you! Thank you!
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Hello Theresa..I'm also newly diagnosed this past week (with recurrence)..That port is gonna really help.
Now I wish I would have kept mine from before.
I'm also very grateful for this forum!
So much good information and encouragement!
leapfrog:
I don't know you, girl but you are AWESOME! Thanks to everyone who posted these tips.. ((hugs))
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We agree, Leapfrog! Your post is really helpful!
Thank you all for sharing!
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Nothing can prepare you for the shock and horror of being told this news. From the moment you wake up to the moment you go to bed, for the first few months its all you can think about. I can only speak for myself but what i found helped:
1. Antidepressants and sleep medication. You need to be able to catch your breath and get a handle on the unknown. This helped me enormously.
2. I scoured the online forums for people that were doing well with a similar diagnosis. There are lots of us out there. This will give you hope. Dont read the scary posts and end of life posts yet. You are not there yet and it will scare the crap out of you.
3. However u might feel now, u will not die tomorrow. You will have time to get used to this new normal and take care of what u need to do. Now is the time to be gentle on yourself. Trust me, you will smile and laugh again. You will find the joy in life that those without this diagnosis do not know.
4. If you can, get a second opinion. If thats not possible, post on these boards for others advice. The women here know a lot. Once you have reassurance that you are getting the best possible treatment plan you can, you can leave your treatment to the experts and be able to concentrate on other aspects of your life. The biggest battle is dealing with this emotionally so save your energy for this.
4. If you find solace and a sense of control by changing your eating habit and exercising then do it. But do not feel guilty if you cant. For the first year i drank a lot and ate terribly but ive been stable for four and a half years. Dont beat youself up about this.
5. Dont tell the world your full diagnosis. Only those you trust. You might regret being so public later on and you cant take it back. Others reactions may scare or disappoint you, and it will feel so much worse in this fragile state.
6. Find a support network. Online or family or a few close friends who r willing to stepup to the plate. Try not to take it personally if they cant. You may scare them of their own mortality or that may not have the skills to deal with it. Its not ur fault if they cant handle it. You have the right at this moment in time to be completely authentic as to how u feel.
7. Do not give up hope. I felt so broken and was so envious of those around me. The thought of being in treatment forever is overwhelming. You will be suprised at how quickly you adapt and build your life around it.
8. If you continue to work dont stress about not being up to scratch. Thats not important right now and dont be afraid to push the boundries as far as you can. I worked all through chemo because i needed the distraction but was hopeless at my job. Work is for life and sometimes life comes before work. Thats ok.
9. Have faith that you will feel better, and sooner than you think is possible. It takes time but it does happen. You dont need to force it or battle through.
10. Take one day at a time and don't lose hope. This is path that you cant imagine being able to walk down. But you will. You are stronger than you think.
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Dita, great list. I love how you say if you find solace and control in diet and exercise, great, but if not, do not feel guilty. I gained at least twenty five pounds since disgnosis. It has only been recently, after almost seven years with mbc, I started walking and cutting back the amount of food I ate, losing twenty pounds. I eat healthy foods, sure, but I also still eat pizza, candy, dessert, ect., it is in small amounts....er...smaller amounts. I won't deprive myself of the pleasure of eating delicious food. I never drank much to begin with, but i love an ocassional margarita or other mixed drink.
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I am similar to what someone posted above. Changing your thoughts around to make the situation easier to mentally deal with. When we assume we are "dying of cancer, all treatments and SE will seem worse. This was my experience. My social worker suggested that I reframe my thoughts around "living with cancer" instead. It does take a long time, BUT most days, I do not feel gloomy about it. The second piece of advice if you want a natural mood booster is walking. I walk approximately an hour a day, always outside, even if cold and snowy. I believe the fresh air and exercise aid my sleep, aids any SE I may get from ongoing treatment and boosts my overall mood.
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My mother has had breast cancer since 2003. She was cancer-free from 2003 till 2014. She has had bone & liver metastasis since 2014. Throughout the past 3 years, I frequently visited this site because I always found first-hand insights about everything related to cancer and its treatments. I thank you all for the inspiration and indirect advice you provided throughout my mother's heroic battle. Now that my mother is sadly gone, it's time to give something back to this community of heroes. I've compiled a list of advice highlighting the most important lessons we've learnt from this challenging journey. Whether you're a patient or a caregiver, I hope this advice can benefit you in any way:
- After you have undergone the initial chemotherapy & radiation, you might be given hormone therapy (pills) to take for years after that. I strongly advice against stopping these pills. Some oncologists advice the patient to stop the hormonal treatment when there's no recurrence after a number of years. If this happens, take a second opinion, or discuss the risks with the doctor. If you must stop hormonal treatment, do a regular short-period check-up after stopping the pills to make sure that there's no cancer recurrence. This is especially important to cancer patients whose cancer is hormone receptor positive, and whose original cancer has spread to the surrounding lymph nodes. My mother was cancer-free for 11 years after the initial surgery chemotherapy and radiotherapy. She then had a recurrence after she stopped the hormonal treatment as per the oncologist's advice. She coincidentally discovered metastasis to her liver and bones in her yearly routine check-up.
- If metastasis has occurred in any other organs, always involve another doctor, besides the oncologist, specialised in the suffering organ e.g. if the cancer has spread to the liver, involve a hepatologist, etc. Do this even if the oncologist says that a specialised doctor isn't needed. I've discovered - the hard way - that most oncologists lack enough in-depth medical knowledge outside the domain of cancer. This limited knowledge is never enough to cover all the risks associated with metastatic cancer and its treatments.
- Upon the appearance of metastasis you have 3 goals: a. Minimize the cancer spread and activity in the suffering organ(s). b. Stop the cancer from spreading to additional organs. c. maintain an acceptable quality of life for the patient, and avoid causing unnecessary damage to her as a result of the aggressive treatment(s).
- If breast cancer spreads, it usually goes to 1 or more of these 4 organs: bones, liver, lungs and brain. Bone metastasis are the easiest of all. Brain metastasis aren't as terrifying as they sound, especially if they're discovered in the very beginning. They're usually treated with non-chemotherapeutic means; the most common of which is radiation. What I know is that they have a relatively low rate of recurrence after treatment. The priority are liver and lung metastasis. They're the ones that should be closely monitored and treated if they occur. This doesn't mean that you should panic at all. I know many patients that have been living with them for a great many years.
- Keep asking your oncologist about the possibility of immunotherapy. It's the latest wave in cancer treatments, but it's still in the early stages of development. It's available as a treatment option for some breast cancer subtypes. Soon, it'll be available for all cancer patients. The good thing about it is that, unlike chemotherapy, it works by boosting the immune system to kill cancer cells, so it doesn't harm the body like chemotherapy does. Ask the oncologist frequently about updates regarding its availability.
- Always question the oncologist's decisions and get involved as much as possible with the treatment process. To the oncologist, the patient is just another case. To you, the patient can mean the whole World.
- Read the scans & lab tests thoroughly & if there's anything you don't understand, google it. You never know what the oncologist might overlook, or take lightly. Again, I've discovered this the hard way.
- Always listen to the patient's feedback, complaints and symptoms; even if the scans, lab tests, and the doctors' opinion point otherwise.
- Don't get too fixated on the cancer that you forget to pay attention to the rest of the body and its functions. My mother (who sadly passed away last October) did not die of the cancer, she ended up dying from liver cirrhosis that her oncologist did not take seriously, and consequently failed to take address, or take any precautions regarding it (by switching to another chemotherapy that doesn't affect the liver & by decreasing her general medications), or even refer her to a hepatologist for a second opinion. I was too preoccupied with the cancer itself that I failed to notice the word "cirrhosis" in her scans, neither did I know what a cirrhosis was at the time. I only learned about it after re-visiting her scans after she passed away.
- In the case of recurrence/metastasis, opt for alternatives to chemotherapy if this is possible e.g. hormonal therapy, targeted therapy and immunotherapy. Chemotherapy is the least preferred type of therapy, so avoid it if ever possible, especially in the early stages of recurrence/spread. However, if there's no other alternative, go for it. In the case of localised cancer (cancer that hasn't spread) the initial chemotherapy and radiotherapy are highly recommended to minimise the chances of cancer spreading.
- If you have symptoms that might suggest something wrong with the liver, the doctor will ask you to do a liver functions blood test. Even if the liver functions turn out normal or close to normal, and you have persistent symptoms, I would advice doing an ammonia test in addition (which isn't a part of the typical liver functions test). Just to be on the safe side. Again, I learned this the hard way.
- Try as much as possible to let the patient pursue a near-normal life. Try not to remind her of her illness as much possible. Convince her that cancer is nothing but a group of cells that have gone stupid.
- Pray a lot, but don't get fixated on a certain outcome. Pray for healing & be certain that God will answer your prayers, but at the same time open up your acceptance to all possible outcomes. Surrender the entire matter to His will.
- Read the following books: Radical Remission by Kelly Turner & Anti-Cancer by David Servan-Schrieber. Both books available in paper back, iBooks & audiobooks. Also, watch the documentary Heal - available on iTunes.
- The patient's psychological well-being is equally-important as her physical well-being.
- Don't worry too much, nor be at ease too much. Find a fine balance between the two extremes.
- Administer anti-cancer supplements, and anti-cancer foods whenever possible. This is especially important when the cancer's activity is low.
- If there's anything specific you want to ask, reply below and I'll be glad to help. I have a LOT of cancer insights that might come in handy.
- Finally, despite everything that has happened, I still think that cancer is definitely not an automatic death sentence. Again, most probably my mother didn't die of cancer. God is above all; if He wants to heal someone, nothing can stop Him from healing them. So never lose hope, and stay strong. Each & every single one reading these words - patient or caregiver - is the very definition of a hero. God be with you all.
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Wow, AhmedG, this is a really amazing list. We really appreciate you taking the time to write this out! We are thinking about you and your mom!!
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thank you very much Moderators
Please feel free to share on any other forum on breastcancer.org if you see it'll be of benefit there.
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I hate that I am back on this site, but one evening of reading posts and I’m reminded why it meant so much to me when I was first diagnosed. I have just learned that my cancer is back and in my liver. To say that I am scared is an understatement. I know that I am strong and can handle what’s coming my way in 2018, but I am still scared out of my mind. My liver panels have been elevated since August, and I’ve had US and abdominal CT scan which both were concerning, but showed no masses. After a liver biopsy, I now know the BC is back and has spread. My kids are 14 and 11, and I don’t know how to share this with them. The sh@$ty roller coaster ride just took off again, and I am not ready
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hI Birdgirl, I was diagnosed stage IV about a year ago. I have learned to accept this s@$t show as best i can. Check out the liver Mets thread. There is alot of good advice and support there. This is so unfair!
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Thanks Fraidycat1954. I'm slowly starting to accept this new phase, but I'm still pissed. I'll take a look at the the liver mets page. I'm starting chemo again next week, so hopefully I'll find some folks with insight to share.
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Good Morning,
My 72-year old mother, who tragically died on Tuesday 01/17/2018, had encountered many issues after being diagnosed. She was a long time viewer of these forums, and recently started posting. I hope the tips below it will help some of you. Even if it benefits one person, it will be worth it.
1. When you get your first diagnosis, go straight to the top if you can, ie: MD Anderson, Moffit, Sloan Kettering, etc. Try not to dabble with local doctors and as long as you can afford it and/or if your insurance is good for it, get the absolute best from the start. This will eliminate a LOT of headaches and heartache later.
2. When the doctor recommends specific treatment(s), do your research first, lots of it. When you feel that you agree, go forward with it, but it always helps to get a second or third opinion in person.
3. As soon as possible, use Weisenthal Cancer and get your samples out to them. They provide an overnight shipping label and specimen container with reagent. Make sure to follow the directions and get it to them ASAP. Within a week you will have your results. I cannot stress this step enough, as it will save you a LOT of grief in getting potentially the wrong chemo drugs that can do more harm than good.
4. Look into low-dose chemo treatments as options for more aggressive cancers.
5. Cold Caps work for saving hair! You will need an entourage to administer them properly, or a facility that has them in house, but its worth every penny.
6. Ice packs on hands/feet during chemo helps eliminate much neuropathy later, so use them!
7. Fatten yourself up as much as possible prior to chemo. In the unfortunate event that you have gastro symptoms, you will have plenty of excess body mass to burn, giving you additional time before becoming severely malnourished.
8. Get the cancer treatment and get the disease under control first before any exploratory and/or elective procedures.
9. When getting procedures done, make sure the doctor knows your diagnosis and/or any complications your disease may have. Remember, you can always say no. Look online and see if you can research the procedure for someone with a similar diagnosis and make sure you know what you're getting into.
10. Use your support ground and have as many people help you as possible to do research, be with you, talk to you, and give you their positive energy.
11. If you know you have something going on, ie: a tumor, DO NOT WAIT. Get the tests, get the diagnosis, and refer back to step #1.
I wish you all, and your families, the best of luck. I wish that all of you beat this disease and are able to share your stories later with others. My mother would have wanted all of you to survive and live well, and I know that she would have willingly sacrificed herself if she knew it would help someone else. I hope that her experiences can help some of you, or even just one person.
Love and best wishes to all of you.
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Faith, we're so sorry to hear about your mum's passing, we want to send our deepest condolences to you and your family.
Thanks so much for sharing this really well thought out and comprehensive list, we're sure it will be of huge help to other members. Sending big hugs to you and your family
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I recently joined this site and am learning lots, thank you! I was diagnosed November 2016, left side mastectomy in December 2016, then chemo February - April 2017, followed by 30 radiation treatments May - June 27, 2017. Through a strange sequence of pneumonia which warranted a scan, we discovered a small lesion on my right iliac (hip), biopsied January 2018, and here I am
I am wondering about Radiation on the hip? I am in a Radiation Trial but am on the Standard side, meaning I am being studied while using my MO's protocol of Femara and now my first cycle of Palbociclib, February 2018. Both my MO and the Trial RO have said to wait till I have pain or the tumor grows, before radiation will be used - thoughts, especially if you have/had similar scenario? I will be having ct and bone contrast scans every 3 months...0 -
Middlefield, CT Joined: Apr 2010 Posts: 88 mimi791 wrote:
Hi:
I am 8 years out from my initial dx....and this past summer I developed a radiation induced sarcoma in my right scapula. This is an extremely rare late effect of treatment and I went to Dana Farber and Brigham and Women's in Boston. I moved up to Boston for 6 weeks to do my radiation and then had surgery to remove my entire scapula and a whole lot of other tissue on 12/1/17. They obtained clear margins and sent me home to reclaim my life. 3 weeks ago, my left arm...which has been one active arm as the right one is stuck in a sling for a year, began to ache. I went to my local ortho, who did an xray and BOOM...bone met. It fractured during the week that we were waiting for my insurance as I picked up a pen. That won me another trip to Boston last week to have the fracture fixed and also a staging CT that has showed mets at T10, T11 and L2 as well as 2 spots in my right lung...one upper that they think is either a met or scarring...it's weird looking and one in the lower which does appear to be a met. Needless to say...I'm a hot mess right now. I also am waiting on pathology because there is the chance that it's the sarcoma that came back....not the breast....which would really suck because the breast cancer has a LOT more treatment options. Even more aggravating is the fact that I feel really good....out walking 2+ miles a day even with the arms that only work from the elbow down making me feel more like a Tyrannosaurus Rex than a person.
Right now I vascillate from denial to complete breakdown to completely numb in cycles. I know I can only do so much until we have the pathology finalized and yet, the fact that there is metatstasis is there. I don't understand anything right now, and I don't understand that I'm going to die. I am terrified. I have found 2 good books that I am using to help me to understand what is happening, but my sadness at the thought of leaving my life and family hovers over me like a stormcloud. I am so afraid of all of this that I feel paralyzed by it at times.
Your thoughts and ways that you cope with what is going on are greatly appreciated. I decided to start a thread for myself because I was lost in all of the other threads out there as to how to cope from day one.
Thank you in advance for your help.
Melissa0 -
Hi Melissa,
I can totally relate to the storm cloud of sadness hovering over you. I hope that you have had some results from your pathology that has led you to some decent treatment options. I feel better when I feel like I'm actually doing something about this diagnosis. I'm considering heading to Dana Farber for a second opinion on all of my crazy stuff too. Do you like your MO there? I seem to be an outlier for everything and my MO seems surprised by my recent pet scan findings. It appears that I also have some cancer in my abdominal cavity that was interpreted as just physiological the last time. There's a bit of a discussion between the radiologist and my MO as to whether it's BC mets or mets from a primary gyn tumor. I'm over it! Right now, it looks like I have liver mets, lung mets, and possibly peritoneal carcinomatosis. These are not good diagnoses, so I'm definitely walking with a storm cloud. But, I start Ibrance/Femara tomorrow, so I have to hope that these drugs will work for me. I'm constantly walking the line between being realistic and being hopeful. It's hard to stay in the middle.
Here's how I'm coping at the moment (it changes regularly). First, I let myself completely meltdown when I need to. But, I try to do it on my own and away from my husband and kids. They are all so scared, that seeing me freak out really freaks them out. I will tell my hubby that I need to just soak in the bath and be alone, and I just cry. Usually I feel better afterwards. Second, I am taking something to help me sleep, because nighttime is the worst for me worrying about the future, and being deprived of sleep makes me more emotional. Third, I am in an online BC Mets support group that is very helpful, as well as sites like this one and I started seeing a counselor to help me process this grief. Finally, I keep myself distracted with work and family throughout the day and pretend that nothing is wrong as often as I can.
I read a great book that made me feel better about how to walk the line between hope and hopelessness, called "Everything Happens for a Reason, And Other Lives I've Loved".
Take care,
Missy
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I understand how you are both feeling. When I first got my diagnosis I was also terrified to the point that the only place I felt safe was at home with my family. The good news is that unlike when my mother passed away from cancer 35 years ago this is not a death sentence. There are so many treatments available that my nurse practitioner said that breast cancer is treated more like a chronic illness now. I understand and am very realistic that this disease may be the thing that will one day end my life but I am not letting it take my life that easy I am going to fight and enjoy the time that I have left with my family. We don't want to leave them with the last memories of us being sad; we want them to remember that we did fight the fight and that we made more memories for them to think of us when we are gone. I don't know if you have scrolled through this sight but their are women on her that have the mets in their lungs and have actually become NED for years. The one thing that I can say is don't give up.
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Thank you. Just recently diagnosed and I needed your post.
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Hi France
I am sorry to hear of your diagnosis but understand how you are worried about finances. I would not wait til your short term disability is over before you apply for Long term disability. If your diagnosis is terminal which Breast Cancer Mets is then it should only take a letter from your doctor with your diagnosis and saying you can’t work.. I used to be totally freaked at the word terminal until I spoke to my oncologist and she has many patients that have had this for over 10 years and they now treat MBC as a chronic disease. If one treatment doesn’t work they just go to the next. About the disability just remember that the disability company that your company hires is not your friend no matter how nice they are to you on the phone so only give them the information they absolutely need. If you want long term disability don’t tell them you might be able to work. You don’t know that anyway. If they give you any trouble about giving you long term disability because you were laid off during short term disability get your plan documents and have either a compensations and benefits person you know not affiliated with your company or a lawyer look over your documents. They might not give you any trouble but every company has their own set of ethics. Just remember everyone living on this planet is terminal and God is the one who says when he wants you home. Stay positive. I say a line of scripture whenever I hear those negative voices in my head. It is “ I will not die but live to declare the illustrious acts of God” Psalm 118:17. I don’t know if you are Christian or not but Dodie Ostein had stage I’ve cancer and if you google her you will see a list of the scriptures she said everyday. It is helpful to me but I realize everyone is different. I wish you the very best with your finances and I send prayers for you from North Carolina
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thank you so much for your post. It was just what I needed to hear tonight. Keep sharing. You have so much to say and you arehelping people you don’t even know.0
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Thank you for these encouraging words. The diagnosis is a shock--like the other shoe dropping. I am cautiously optimistic and looking forward to treatment that will make me more comfortable.
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Dear BrennaCara,
Welcome to the BCO community. We are sorry for your stage 4 breast cancer diagnosis but so glad that you reached out to our members. You will find a lot of support and information here. Please stay active and connected. We are here for you. Let us know if there is anything we can do to help you with navigating the site. The Mods
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I am so happy you posted. I am just finding out. I have realized that I am not an alien for Jupiter. You are an inspiration am Patrina for New Orleans. I need to sit back and review and take notes on my visit tomorrow. I know now how to address my concerns and treatments. I will post Thursday after the central port in places in my chest. Thank you again. Angels sent.
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just diagnosed.. probably bone mets to the ribs and spine.. awaiting test results.. have a pet scan and MRI this week.. was on Lupron , aromasin and Herceptin.. feel I have been handed a death sentence.. treatment failed. Thinking of my family, children this is hard.. any words of comfort.. I need more time for my children.. feeling really down. Online statistics are horrible. Any advice .. or comfort much needed.
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SAP1970
I am so sorry for your situation. I don't know really know what to say except there are LOTS of women on here who are multi-year Stage IV survivors with bone mets. There are many of them in the Ibrance discussion thread. I feel for you, I am still in shock myself and shedding many tears. But there is hope. You are not a statistic. Statistics are made up of thousands of cases. You are a unique case of one. I get overwhelmed also, but then I read on these boards how women with Stage IV have gone on with their lives, enjoying their families, even travelling. It is not an immediate death sentence, although it can feel like it.
with compassion and hope,
Amica
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I have been dealing with this for a little over a year now , failed many drugs and now I'm on Halaven { Please Lord make this drug stick for a long while} I refuse to give up ! I have no choice but to live for my family ! I still have things I want to do like travel . Don't get me wrong I have days when I'm a big ball of panic . But I also believe science is close to something good and I intend to be around for it . Pray , enjoy life and try to push the bad stuff to the back of your head . I pray for all of us everyday and God Bless you all
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