Need Your Tips for Members Newly Diagnosed Stage IV
Looking for your tips to share with members who have been newly diagnosed stage IV/metastatic. Being diagnosed with Stage IV/Metastatic disease involves a unique set of concerns. If you could give your newly-diagnosed-with-mets self advice/tips/encouragement, what would you say? Please post in the thread below.
We're hoping to share these tips in our next Community Email Newsletter, with a highlight on National Metastatic Breast Cancer Awareness Day, Oct 13, so any and all tips/advice you could share in the next week would be very much appreciated!
Thank you in advance to this very special and valued group!
--The Mods
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First, take a deep breath! You have time to educate yourself about metastatic Breast cancer and make informed decisions. Second, education is key in dealing with metastatic Breast cancer. Read, question, research, then keep doing it. Make sure you have a doctor who treats metastatic Breast cancer, a NCI affiliated doctor is your best bet. If your docor is not supportive or not open to questions, RUN!!! Lastly, reach out to others who are going through this, the discussion boards at BC.org have been a valuable wealth of supports nd information.Know that many of us are doing well and living life
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Live life with joy. Do not put your happiness on hold.
You are not a statistic, so don't pay attention to those.
Have a medical and support team you trust completely.
Know that you didn't do anything to cause this.
Remember that everything is possible
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It's OK to scream, cry, feel fear, sorrow, etc. This will pass. You are not going to die tomorrow, next week or next month. Life will get better, I promise.
In the meantime a tip: To get you over that hump, ask for whatever chemical help you need. If you're in pain, get it controlled. Having trouble sleeping? Ask for sleeping pills. Depressed? Get meds.
It's not necessarily for forever, and there's no reason to be stoic about anything.
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Hello all,
I am newly diagnosed Stage IV. I guess I am extremely lucky as I was found to have two small lesions ( both under. 2cm)in the sacrum and ilium by accident. My markers, calcium and alk phos was all normal so the biopsy results were a bit of a shock. I am an RN so I knew as soon as there were lesions there was a good chance that it was BC. I am dealing well as I know finding the early is a gift.
I was a two time BC survivor with negative nodes, yet here I am.
So now my plan is Rads to these tumors. they are extremely painful,even with me taking Dilaudid like they are Tic Tacs. Rads will last 3 weeks , 15 treatments.Then a 2 week wait and I will join a Faslodex and new drug Clinical Trial called Solar 1.
I love my MO and my RO is pretty great too. My husband is AWESOME! Unfortunately his dad died only a week into my rads and they lived 6 hrs away. So he had to leave for 8 days but my best friend pitched hit for him, taking me to Rads and taking me out for dinner a couple of nights while he was gone.
Now just to add to my drama, my boss calls me to tell me our whole division got laid off on day 4 of my radiation. Luckily I Was already on short term disability thru work so I wasn't caught up in the lay off. I am on STD - short term disability for 28 weeks. Then wilL HOPEFULLY go onto LTD
So my question is : Do you think I can qualify for LONG term disability? I have a private LTD PLAN plus will qualify for SS disability ( worked for 36 years full time). I am sure I will qualify for the Short term disability.
And will I be able to collect serverence if I go for STD to LTD?
Does anyone know?
Thanks for the sister-ship, support & love besides the guidance.
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Hi, Cat. You might be interested in looking up the thread called "How Many Stage 4 Girls are getting SS disability".
https://community.breastcancer.org/forum/8/topics/...
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Keep reaching out to friends and loved ones even if they seem to be retreating from you. I found that the more I felt them retreating the less i would reach out thinking they just don't want to deal with this. After some experience I realize a lot of people just don't know how to help or communicate. You will need your friends and family even if it is just to go shopping with you or to a movie. Don't get caught in the cycle of retreating as they do or you will be very lonely.
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Yes,it's a shock. Acknowledge that, mourn, cry and then make a plan. Seek a second opinion if you feel doubt or uncertainty. Now, know you will not die tomorrow or next month. No one knows when you will die and if your mo gives you an expiration date find a new mo! Do not give away your possessions, enjoy them. As a matter of fact, buy that new winter coat or pretty earring if you want! Travel if that's your thing, but buy insurance that covers pre-existing conditions. Quit your job if it doesn't bring you joy, but keep working if you love your work. Yes, for the majority of us, stage IV will shorten our lives, but don't put your foot in the grave even one minute before you have to! Even with pain or side effects of treatment you can find fulfillment in life.
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Perfect words.
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Prioritize joy. Make your life worth living. Care for yourself. Take loving care of your body and soul. Get rid of old anger, hurt, sadness, trauma. Go see a therapist, a guru, a priest, a shaman - whatever does it for you in order to get your mind and heart in order. Find peace.
I may die earlier than I had planned. But I am living now, because my life is joyful now.
And that wasn't the case two years ago, when I was diagnosed.
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y husband and I met twice with a counselor, it was hugely helpful in getting through the first two months. She helped us understand and accept our feelings and suggested a few coping mechanisms that helped tremendously. My most difficult issue was dealing with the reactions of friends and family. Her advice really helped us through that difficult time.
I would recommend to anyone to seek counseling with someone experienced in newly diagnosed patients.
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First thing to do when 1st Diagnosed Stage 4 is to have your Dr. draw out your location of the Cancer and write a plan for you on paper. 2nd get a Second Opinion. 3rd depending where you have Mets, consult a Dr. that's an Oncologist Specializing in those Fields. For example, If you have Brain Mets consult a Radiation Oncologist. Have a Team making sure your Metastasis is being carefully observed. 4th Start Eating Better, cut out Sugar and Workout much as possible. 5th Everyday Matters, get out an enjoy life
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Don't make any big plans right after diagnosis. I was sure I'd be dead in a week, so my husband and I spent hours/days working without lawyers to work up our estate and child care plans. It was exhausting and heartbreaking.
Take your time
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Not every newly diagnosed person will need chemo, but if they do, this is my list of items that are handy during chemotherapy:
1. A washable tote bag, with some good pockets for storing any schedules or information that your chemo team gives you. I also keep my port information in my bag.
2. If the patient doesn't have a port access, and gets vein access, they won't be able to use one of their hands well during chemo. An e-reader/tablet comes in very handy, as the compromised hand can hold the reader, and the free hand can navigate.
3. Noise cancelling headphones. Infusion suites can be noisy, with small TVs at almost every chair. If you hate TV noise, and I do, a good pair of noise cancelling headphones and a podcast or music service lined up on your tablet can make your chemo session more relaxing. If your chemo suite has no wi-fi, or spotty wi-fi, ask your family for a small device that you can download podcasts or music onto. The headphones don't block out your chemo nurse asking you questions, so you aren't completely cut off from the world. Ear plugs also work well if you just want some quiet.
4. Sleep Mask. If you get Benadryl as part of your pre-meds, you are going to feel nappy. Find a comfortable, washable sleep mask, as the bright lights in a chemo suite will get in the way of optimal napping.
5. Food and Drink. Most chemos require that you drink a lot of fluids to flush your system. Get a big old bottle of water, doctor it according to your taste buds, and keep drinking. Pack a shelf-stable, bland snack in case your chemo suite doesn't provide them. This is not the time to eat something overly sweet, spicy, or smelly - unless you enjoy nausea.
5. A few good magazines and books. I've never been able to read complex stuff during chemo (I blame pre-meds!), but glossy magazines and books that are old friends are great. Don't pack so many that your bag gets too heavy. Remember, when you are done with them, you can donate them to the chemo suite.
6. Chargers for your phone and devices. Running out of juice during a chemo session can lead to boredom.
7. A change of socks, and undergarments. I like to wear house socks with grippy soles for chemo because I put my feet on the recliner chair, and I can zip to the bathroom without putting my shoes back on. When removing the socks, put them in a plastic bag and wash them when you get home. Medical floors can be quite germs.
8. This isn't for the bag, but since you are chugging down the fluids, you'll need to go to the restroom with your IV pole, and a compromised hand, for those of you without a port. Dress accordingly. I have found that pants with elastic waists are the easiest to navigate with one good hand. Those of you with small bladders might want to have some absorbent liners pre-installed in your undergarments, in case someone is in the bathroom and you are forced to wait. Some chemo requires a big bag of fluid to administer, and you might wake up out of your premeds nap with an Urgent Need. Have spare liners in your bag. Learn from my pain - I totally wet myself once waiting on the bathroom, and had no spare undergarments in my bag.
Beyond chemotherapy logistics, a newly diagnosed person should find/have people to talk to. Your head is going to be messed up. It took me six months to become a rational person again. This site helped so much. Thank you breast cancer.org people for being there when my family just didn't know how to support me.
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Really great suggestions! Thank you, and please keep them coming!
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Time to get your affairs in order. Really, every adult should do so. Rarely does anyone plan to die. Take this opportunity to do just that, plan, organize. It something productive that you have control over in a time when you will have very little control. The peace that planning brings is immeasurable. It's like paying off debt.
Ah, there's another source of stress. Money matters. If you have a life insurance policy, and you do not have itty bitty dependents who will need this money to keep a roof over their heads, check to see if you have an accelerated death benefit rider. If you don't have one (I didn't) ADD one (I did) and make an effort to collect your policy while you are still well. You will need to work with your Oncologist to do this. Pay off your debt and do something with the money that will make you happy. I was able to leave my job. I made some nice donations to charities I care about and I put in a pool. All things that made me feel good. Without debt hanging over my head, I am able to live each day with less fear, worry and tension in the financial area.
Affairs in order and debt secured, now you can concentrate on what's really important. Reconnecting with family and friends. Really this is the most important thing you can do. Make those connections. Keep those connections. It's work but really it's our purpose.
Finally don't forget the connection you have with Gia , God, Spirit, Mother Earth, whatever you may wish to call it or how you perceive it. You are a part of something bigger. You're getting ready to learn the big secret afterall. Now is the time to start cultivating that relationship. The one that will see you beyond this physical world. Spend a few minutes, just a few, every day searching out what that means to you. I take communion with trees. Really. Weirdo... I feel best sitting in the warmth of the forest among friends. I feel connected. Sadly, I live in a climate that drives me indoors for a large part of the year but I still manage to find my connection even if not ideal.
LIVE. You are not dead yet.
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Thank you MaineRottweilers,
You are so encouraging. I am new at this and just can't get over the hump of trying to live without so much fear and anxiety!
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Yes. Breast Cancer with metastasis is one of the diagnosis which Social Security recognizes as qualifying for disability. Though each case is individual. Stay strong and caring thoughts. I was diagnosed in 1999, relapsed in 2000, relapsed in 2013, still going strong! Hugs, take care,Cloudy
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I got approved by SSDI in record time! Whoop!Whoot!
Cat
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Hi everyone,
Today I got the news that my TNBC has moved to my lungs and right hip ..... I am now faced with my treatment options which include a clinical trial, more chemotherapy or just letting things be and enjoy the few months I have left. So my question is .... has anyone participated in an immunotherapy trail and would you do it again? Right now my only thought is I don't want to go through months of being sick to add a few extra months to my life ... I am at peace with the idea I won't be around much longer.
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Wendy, we're so sorry you got this unwelcome news. Sending warm thoughts and wishing you the best. Let us know what you finally decide with treatment options.
HUGS,
The Mods
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Wendy, who has told you "months"? I've heard good things about immunotherapy. It's not as harsh as regular chemo is it? Hugs sweetie.
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has anyone you know that does immunotherapy
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i think a topic with tips for newbies is a great idea. I have gotten so much help from everyone. The best advice is breathe and get a second opinion so you can feel confident in your treatment plan.
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Thank you for encouragement
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this post was extremely helpful to me, thank you so muc
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I have no other words right now than........THANK YOU!
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Below from my MBC Guide is a list of tips provided by mbc patients throughout the years (sorry, I don't know why the numbers aren't showing correctly). You are welcome to request a complimentary copy of the MBC Guide by visiting the top of this page: https://community.breastcancer.org/forum/8/topics/831507?page=3#idx_73
I hope these tips are helpful!
- Always retain copies of your medical records and test results for your ease of reference. This includes blood tests, pathology reports, clinic summaries, radiology reports, etc. These reports belong to you, and patients have learned things from reading these reports that their Medical Oncologists had not mentioned.
- Seek a second – or even a third - professional opinion before starting any new treatment. A second or third opinion can sometimes make a considerable positive difference.
- Keep a diary of all symptoms and side effects and share them with your doctor during you visit. If you have a severe symptom such as difficulty breathing or swelling of the legs, go to the Emergency Room immediately and notify your doctor.
- Feel free to write down and bring a list of questions to discuss with your health provider(s) during your visit.A knowledgeable and confident doctor should fully and clearly respond to your questions and concerns.
- When speaking with your doctor about your therapy, ask him or her if there are any foods or supplements that you must avoid.
- If you will be starting chemotherapy (or are on chemotherapy and experiencing significant side effects), ask your doctor about the possibility of decreasing the dosage or taking the drug less frequently. (You may want to review the company's website where the drug sheet is listed and check for potential side effects and contraindications).Sometimes a reduced or less frequent dosage may make a world of difference in coping with potential comfort and pain issues.
- If you are in pain or any discomfort whatsoever, tell your doctor.And if the initial prescribed pain medication (or other remedy) doesn't work, ask for another option (or a stronger dose).Continue this process until the prescribed medication or therapy works for you.(The sections entitled "Therapies for Pain and Neuropathy" and "Palliative Care" may be especially helpful for this set of patients).
- If you are experiencing difficulty scheduling appointments, ask to speak to the scheduler's manager and also notify your physician.Generally the scheduling staff are managed separately from the physician, so your doctor may be unaware of how hard a patient has to work to schedule an appointment at a convenient time.
- Select a trusted friend or family member who will become your "advocate," and who will accompany you to doctors' visits and treatment sessions whenever possible.
- There is no way to tell for sure what treatments will work for any individual person...even those with the exact same type of metastasis (mets) and the same hormone receptor and HER2 status.
- If a treatment works well, there is no way to predict how long it will continue to work.That is the reason why patients have regular tests and follow up visits with their Medical Oncologists.
- There is no way to predict what side effects any individual will get with any treatment.And a lack of side effects does not mean that the therapy is not working.
- If your cancer has spread to one place and then moves to yet another part of your body, it is recommended to get the tumor(s) in the new area biopsied (if possible) to determine whether the breast cancer in the new area has a different hormonal and/or HER2 profile than that in the original area.An example is cancer changing from HER2- to HER2+, or from ER-to ER+. If the profile turns out to be different, this can change your recommended treatment.
- Blood Tumor Markers (TMs) may be an excellent indicator of how cancer is behaving for some people and completely worthless as an indicator for others.And in some instances, TMs may start off being accurate and then stop being accurate.
- Patients may be candidates for hormonal therapy irrespective of their hormone receptivity status, provided that their cancer is in the bones, soft tissue (muscle, fat or nerves), or internal organs and is not causing symptoms.This is because sometimes the metastasis is indeed hormone receptor positive and the test results are incorrect. (More about this is in the section entitled, "Types of Breast Cancer.")
- Hormonal therapy for hormone positive patients is not a less aggressive or a weaker treatment than chemotherapy ("chemo"). Although hormonal therapy often has fewer and more tolerable side effects than chemo, it can be as - or even more - effective in certain patients. For patients whose cancer is ER and/or PR positive (or have an unknown hormonal status) and who are not experiencing acute symptoms, hormonal therapy is usually a good first choice.Unfortunately not all hormone positive patients may respond to anti-hormone treatments.
- Some patients whose breast cancer is considered Hormone Receptor (HR) negative and/or HER2 negative may have been misclassified based upon their test results.Additional information about this is provided in section entitled "Types of Breast Cancer" under "Testing for Hormonal and HER2 Status."
- Not just women get breast cancer; men can get it as well, although it is rarer (only about 1% of all patients are male)
- Most MBC patients start with metastasis ("mets) in their bones as opposed to their lungs, liver, brain or elsewhere.
- Because it doesn't show up as a solid tumor and looks more like a spider web, Lobular metastatic breast cancer may be more difficult to diagnose and track.It also has a tendency to metastasize (spread) to the abdominal area, so patients with lobular breast cancer should be especially proactive in reporting pain or abdominal swelling to their doctor.
- People receiving shots of any kind (including but not limited to Faslodex or Xgeva) should request that the vaccine be warmed first and then injected slowly.This will help to minimize pain immediately following the injection and in the days thereafter.
- Patients receiving steroids as part of their treatment, such as chemotherapy or radiation therapy, are more susceptible to getting cataracts.Therefore, patients on these regimens should be especially diligent about reporting ocular changes and getting routine eye exams.
- For patients who are diagnosed with metastatic breast cancer without previously having early stage breast cancer, recent research indicates that surgery to remove the primary tumor considerably extends survival.
From: http://www.eurekalert.org/pub_releases/2016-06/uop...
- In addition to ER, PR and HER2 therapies, Androgen Receptor (AR) therapies may be promising.Research indicates that 88% of estrogen-positive breast cancers, 50% of HER2+ breast cancers, and 25% of triple-negative breast cancers (TNBC) are Androgen-Receptor positive, making Androgen Receptors a possible target for many breast cancers.More information about AR therapies can be found in the section entitled "Research and Potentially Helpful Therapies."
- Similar to potentially targeting Androgen Receptors, FGFR1 and/or 11q amplifications have been found in all subtypes of MBC, making them targets for emerging therapies.Research has found that 23% of estrogen-positive breast cancers, 27% of HER2+ breast cancers, and 7% of triple-negative breast cancers (TNBC) test positive for these factors.More information about potential therapies for these targets can be found in the section entitled "Research and Potentially Helpful Therapies."
- If you are interested in a Clinical Trial, you may want to call 1.800.4.CANCER (1.800.422.6237).A knowledgeable representative will conduct a free customized search for you based upon your cancer's profile (i.e. ER, PR and HER2 status) as well as your particular interests such as immunotherapy, chemotherapy, hormonal therapy, targeted therapy, etc.
- Please do not pay much attention to statistics!None of us has an expiration date, and many people with MBC will live for many years...far longer than statistics might lead one to believe. How long you live seems to be mostly dependent on how well your cancer responds to various treatments, and some people also believe that lifestyle may play a helpful role in survival.Many MBC patients who were given only months to live are still alive years later.
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this is great information. So,far I know my cancer has returned, my onco has started me on aromasin and afinitor last scares the pants off of me. I am not sure of much else as i know tests are still in work, I only had the biopsy that showed it last week. Love my onco, she is part of a large hospital with,a cancer center
But you have helped me with questions, thanks hugely
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I am really glad to find these tips. Particularly the part about "you are not going to die tomorrow, or the next day", and make life worth living. Thank you, you generous gals, for sharing such hopeful and helpful advice.
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