Would you share your Stage IV story with us?

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  • Hopeful_One
    Hopeful_One Member Posts: 1
    edited August 2016

    Hi all. The doctor found a lump in my moms breast a few weeks ago. After ultra sound and a biopsy they called us and said it was stage 2. What a relief, it's curable, I could finally sleep at night again. We went back in yesterday and they now tell us it's actually stage 4 mets. I'm devastated. Can't sleep, can't eat. I'm terrified. We're getting CT scans done tomorrow and will discuss treatment options.

    I hate reading statistics. I googled every website, every treatment option , hoping to see much more optimistic numbers somewhere. Anywhere. Nope. The doctors were extremely pessimistic. My mother seems to have accepted it. But there's nobody to really talk to. I enjoyed reading many of the survival stories on here, it was like seeing spots of light in the dark. So I remain hopeful as that's all I really have right now.

    It just sucks being told this. She's the most considerate and sweetest person I know, and has always been my #1 fan. Supporting me through everything. I don't have many people in my life, I don't want to lose her

  • moderators
    moderators Posts: 8,744
    edited August 2016

    Hi Hopeful_One,

    We're so sorry to hear of your mother's diagnosis -- we know this is a very hard time for all.

    When you're ready, there's some really great support on the For Family & Caregivers of Loved Ones With Stage IV Breast Cancer forum, where you can talk with others who are supporting a family member with Stage IV breast cancer.

    We hope this helps. Please continue to come back here for support, get your questions answered, and share your story.

    --The Mods

  • cindi1970
    cindi1970 Member Posts: 2
    edited August 2016

     Dear  Moderator:

                              I would love to share by stories it is filled with twist and turn and not always happy ones. I have learned a lot,  especially for the hard lessons like losing people( fair weather friends). I would need a few days to put it together but I make lots of mistakes so maybe someone could avoid some of them.

                          But I am not a rose colored glasses person it is was it is . However I believe myself too be a happy person that has been sad for too long, but my story is not finished yet...

               I have to learn that you will lose people along the way, I need to start finding new people that can handle the FACTS. And not JUST tell me to pray and it will be just FINE.

  • moderators
    moderators Posts: 8,744
    edited August 2016

    cindi1970, stories of all perspectives are welcome. We would be happy to read your experiences, especially if they can somehow help someone else.


  • zarovka
    zarovka Member Posts: 2,959
    edited August 2016

    Cindi - We're all about handling the facts here. We report the facts, we analyze the facts, we celebrate the facts, we complain about the facts and we mourn the facts. Find a thread with with people who are dealing with your subset of cancer facts and introduce yourself. There is a lot to talk about. I am very well supported with friends and family but there is really no way to bring them into the full discussion, They are not in this situation. It's not their failure, it's really just another fact.

    But we're here and we get it! Join us.

    If you edit your profile to include your diagnosis history and your treatment history, and you make it public, it gives us context for your posts.

    >Z<

  • tsu
    tsu Member Posts: 37
    edited August 2016

    well put Z

    Stage IV-bone and liver mets currently on Paclitaxol weekly for 3 weeks and 1 week off. Body pain, fatigue off and on. Those are the facts I deal with every day. Everybody here knows their facts every minute of every day.

  • ih8cancer
    ih8cancer Member Posts: 4
    edited August 2016

    Hello everyone! I'm glad to have found this site. I really need to communicate with other ladies going through the same battles. I don't have anyone to talk to that seems to understand. Here is my story:

    I was diagnosed in June of 2010 with stage 1A high-grade ductal carcinoma that was strongly ER postive and mildly PR postive. The tumor was only 3mm in size and in my left breast. It was found during a routine first mammogram ordered by my doctor because I was almost 40 years old and had not known family history due to being adopted. As it turned out, they found breast cancer!

    I decided to have a lumpectomy because the cancer was so small and was advised that a lumpectomy or mastectomy would likely have the same result.... which was anticipated to be curative. During this lumpectomy, they did a sentinel node biopsy of 3 or 4 nodes. They were all negative. When I returned to the surgeon for a post-surgical follow-up, I was told that, while she did get clear margins, one side had only a 1 mm margin and they want at least a 5 mm margin. I was asked to have a second surgery to revise the lumpectomy to take a larger margin from that one side. I underwent the surgery without any problems.

    I was then allowed to heal and went through a course of radiation to my left breast. Radiation was completed in November of 2010. At this time, I decided to have genetic testing done and found out in December that I was BRCA 2 positive. I started Tamoxifen and it was suggested that I have my ovaries and tubes removed as a prophylactic measure due to the much increased chance of ovarian cancer (and the strong ER positive receptor status). I had my ovaries removed in 2011 at the age of 40 and went into surgical menopause (which, for lack of a better way to describe it, really sucked!). A year later, they changed me to Aromasin instead of Tamoxifen.

    Fast forward to January 2016. I had mammograms and MRIs alternating every 6 months from 2011-2016 that were all negative. I celebrated 5 years cancer-free in late December after having a negative mammogram on 12/28/2015. About a week later, I noticed a supra-clavicular enlarged lymph node on my right side (under the collar bone), I am a registered nurse and remember from college that this is not a favorable place to have an enlarged lymph node. I had an ultrasound revealing abnormal lymph nodes on both sides of my neck. This led to a biopsy and a diagnosis of a Stage 4 breast cancer recurrence. There are no signs of cancer in my breasts, which was why I was thinking I was in remission with all of the scans being clean for 5 years. The PET scan and nuclear bone scan revealed mets in my pelvis, lumbar spine, thoracic spine, cervical spine, and sternum as well as many cancerous enlarged lymph nodes in my chest area. Needless to say, having a recurrence was not on my radar! When I went through treatment in 2010, they were highly optimistic that I was lucky to find the cancer early and it was very likely to be cured. Knowing that I have BRCA 2, I expected to have the possibility of dealing with breast cancer again in my life, but I figured I was watching for a new cancer, not a recurrence. I was/am totally blind-sided and devastated!

    I decided to explore my treatment options and chose to get my treatment at Cancer Treatment Centers of America in Zion, Illinois. They started me on Xeloda (2000 mg in the morning and 1500 mg in the evening orally) and I have had GREAT response from it. My tumor markers are down, my Circulating tumor cell count is down to zero, they lymph nodes have significantly shrunk, and it appears that the bones are healing. I do get a shot of Xgeva every 3 months to help with bone healing. I also get massage, Reiki, and accupuncture treatments at CTCA when I am there (which is every 3 months now).

    That's my medical story. My personal story is that I am the mother of 5 children ranging in ages from 16 year old twins to 24 years old. I am the step-mother to 4 children ranging from 15-25 (the 15 year-old lives with us) and my oldest step-daughter has 3 children ages 1, 3, and 5. So I am a busy mom and very active in my grandchildren's lives. I have recently decided to resign my beloved job as a labor and delivery nurse to stay home and be with my family. My kids struggle with the diagnosis and my 16 year-old twin girls are in counseling to deal with it. My biggest frustration is not knowing how long I have to live. I've always been a big 'planner' and not knowing what the future holds is so hard.

    I hope that I can meet other women to share stories, information, and support. I can't really discuss my true feelings with my husband and children. Emotionally, they just can't give me the support that I want and I don't want to burden them.

    Thank you for reading. I look forward to chatting with you ladies.


  • ih8cancer
    ih8cancer Member Posts: 4
    edited August 2016

    Cindi,

    I would like to hear your story. Cancer sucks and I think it's important for all of us to support each other, good news or bad! I understand the way you feel. Sometimes I feel the same.

    Kristine

  • moderators
    moderators Posts: 8,744
    edited August 2016

    Hello Ih8cancer.

    Welcome to the bco community.

    We're so grateful that you shared your story here and we hope that the community will become a valuable source of support for you.

    Would you have a photo to put with your story? we LOVE pictures here :-)

    Sending our love and hugs,

    Heart

    The Moderators.

  • dimccleland
    dimccleland Member Posts: 16
    edited August 2016

    Hi all,

    I've been lurking around the Stage IV forum for a while while I have have tried to get my head around my diagnosis and have decided that it's now time to jump in and share my story.

    I was diagnosed with very aggressive Stage 3 IDC in my left breast and lymph nodes in December 2014. I was initially diagnosed as having TNBC but, following a FISH test, the diagnosis was changed to ER-, PR- and HER2+. I did 12 sessions of Taxol together with 4 doses of Herceptin and Perjeta and then 5 sessions of AC. Following chemo, I had a bilateral left mastectomy (in fact, it will be a year this coming Thursday since my mastectomy) and 25 fractions of radiation. The pathology reports following my mastectomy reconfirmed a diagnosis of TNBC however my oncologist recommended that I complete the course of Herceptin and I finished my treatment on the 1st of June 2016.

    Celebrations were short lived.

    A week or so following my treatment I started feeling generally unwell. I went to see my family doctor who said that I was probably just struggling with summer allergies. A week after that I saw my oncologist for a routine check-up. She decided to do a CT-scan just as a precaution but didn't think there was anything to worry about as the routine CT-scan I had done in February 2016 was perfect. Unfortunately, there was definitely something to worry about.

    The scan showed numerous nodules over both lungs and, also, numerous swollen mediastinal lymph nodes. She followed the CT up with a lung biopsy and PET scan. The PET scan showed multiple enlarged supraclavicular lymph nodes on my left side, the largest measuring 0.5cm, multiple nodules scattered through both my left and right lung fields, the largest in the left lingular segment measuring 1.4cm, and multiple enlarged mediastinal lymph nodes, the largest measuring 1.6cms plus small pleural effusions on both lungs and in the pericardial area. The lung biopsy confirmed the diagnosis and the pathology showed that it was TNBC.

    I've just completed my first cycle of Abraxane and Avastin - each cycle consists of Abraxane once a week for three weeks with Avastin on week 1 and week 3. I then have a week off. I start my next cycle this coming Wednesday. Once cycle 2 is completed, we will do another PET to check on the progression and if the treatment is working, I will carry on with this delightful cocktail for another 4 to 6 cycles. If its not working, we'll move on to something else.

    For those interested to know a little more about me, I'm 49 years old, I'm a South African expat and I live in Dubai with my partner of 27 years and our three children (25, 22 and 19), I am also step-mother to his two children from his first marriage (33 and 30) and step-granny to two gorgeous grandchildren (aged 9 and 6). We are very lucky that all of our children live with us in Dubai. I am really struggling to get my head around this diagnosis and find that I am resenting the fact that I have to put my life on hold again just when I was beginning to feel like things were getting back to normal. As I am on weekly chemo for an indefinite period of time, and the week off is supposed to the week I recover and rebuild my white blood count etc, the oncologist has grounded me so we have had to cancel all our holiday plans for the remainder of the year ... we were planning on going to Vietnam and Cambodia in October and then Sri Lanka for Christmas and New Year with the whole family. I am also trying to decide whether to stop working, I work as a company secretary and love my job, but it is quite stressful and I am thinking that now might be right time to call it a day even though I will really miss it and it helps keep things normal. I keep on telling myself that this is just another bump in the road but think that is wishful thinking!

    Thanks for reading this and I look forward to getting to know some of you ladies.

    Take care

    Di x

  • slepeint
    slepeint Member Posts: 7
    edited August 2016

    So lovely to read these stories! It's interesting how there are two kinds of "experience" with MBC. The long-term survivors - and the BURNED THROUGH A LOT OF TREATMENTS survivors! I'm in the second class. So I've learned a LOT in my last two years of MBC. Bascially, my stage IV cancer path has looked like this:

    image

    image

    image

    image

    Treatments have never been able to interrupt the joy of my life -- and ACCELERATED DEATH BENEFITS should be something everyone looks for in life insurance!

    You can read my signature for a list of treatments I've been through. But that's not my story. The joy of living is.

    In gratitude,

    Suzy

  • moderators
    moderators Posts: 8,744
    edited August 2016

    Suzy, what a fresh take! Thank you for sharing!

    --The Mods

  • moderators
    moderators Posts: 8,744
    edited August 2016

    Dimcleland -- thank YOU as well for sharing! You are all such an inspiration!

    --The Mods

  • Lita57
    Lita57 Member Posts: 2,338
    edited August 2016

    I was 'surprisingly' diagnosed with Stage IV IDC w/mets to bone on 4/14/16

    I had a hardest time getting my primary care physician to get to the bottom of my debilitating back pain, which started in Jan, 2016. Since I'm 57 years old, I thought all the pain I was having in my spine was because of arthritis and maybe a bulging disk or two – which I actually have. But I wanted a more definitive Dx, so in March, I went back to see my Dr again and said, "Physical therapy and the strongest Rx of ibuprofen isn't working. It's getting worse…we need to do some tests and see what's really going on."

    She refused.

    The first part of April, I was making plans to see another Dr outside my health provider network since my Dr wasn't doing squat. That never transpired because a new little adventure started when I woke up at 2:30 am on 4/11 and could NOT move without the worst pain I ever experienced in my life shooting up my spine (way worse than labor pains - and I had back labor for over 40 hours without an epidural, so I know what pain is...I never cried at all during labor, but I certainly cried during this episode of pain). My husband called emergency and they said "Do not move her! Call the paramedics and have them bring her in."

    After a couple of injections of Fentanyl and Delaudid, the ER Dr said I needed to go back to my primary Dr and get a scan. He couldn't authorize it himself. So the next day, my husband and I went back to my Dr and asked for a scan – I was in a wheelchair and could hardly speak because of the pain.

    Once again, she refused. "It's not going to change the original Dx. You just need more PT and stronger meds."

    "My wife has excruciating pain shooting up her spine every time she tries to move! She wasn't having that two days ago. We're not leaving your office until we get a scan like Dr. X in the ER said to do," my husband demanded.

    Rolling her eyes and heaving an exasperated sigh, the Dr sad, "Well, if you insist, I can possibly squeeze you in this afternoon…"

    The following morning, after my MRI, my Dr called me at home. Boy, did that "C U Next Tuesday" change her tune. "You have tumors all up and down your spine. Tumors in your pelvis, on your kidneys, adrenals and bladder. Tumors in the muscles adjacent to the spine and bone marrow abnormalities in your hip bones and pelvic bones…" (It's a good thing I was sitting down.) "Given these extensive metastases, the cancer usually starts in the colon, lung, or breast. We have to find out where the primary cancer is coming from, so you need to go in tomorrow for a CT scan and a mammogram."

    There is no history of BC in my family, going back to my great grandparents. So this was a complete surprise - or rather shock - to me. I regularly get mammos. Incidentally, I had one exactly ONE YEAR to the date before my diagnosis, and it was clean. My type of BC was classified as "occult" (hidden), "amorphic" (without shape) because it cannot be seen even on a digital mammo. The only way they could detect it was by a dye-infused CT scan. The radiation specialist saw "a shadowy, questionable area on the lower outside quadrant" of my left breast. A core biopsy the following week confirmed cancer in the left breast and adjacent lymph nodes.

    Yep, fun times ahead. No surgery for me. It wouldn't do any good – the horse was already out of the barn, and during surgical recovery time, all the other tumors would continue to grow. So I was scheduled for radiation a week later – 10 zaps for this round, with Zometa bone infusions and Xeloda (capecitabine) pill-form chemo to follow.

    Comparatively speaking, I'm blessed because I get around with a cane now and only use a wheelchair for long jaunts at the mall. I don't have to use a walker anymore; I can dress myself and wipe my own butt again. I can even drive short distances, but I still have a lot of pain in my lower back and can't stand up for very long. My radiation onc says I will probably have more "palliative" radiation on the lower spine once I'm off capecitabine. He doesn't want to do it concurrently w/chemo because my side effects will worsen exponentially.

    And the SEs have already been HORRIBLE - especially the intermittent diarrhea and abdominal pain, regardless of what I eat or drink. Some days I can't leave home because I'm a prisoner of the bathroom. The 'Hand and Foot Syndrome' is manageable but persistent. God bless all you gals out there who are still working while going thru this. I miss my job and my coworkers, but I certainly can't work right now...I can't even make a fist or hold tools, and I don't think the boss would appreciate one of his employees constantly running to the lavatory and stinking it up - at least 5X a day. (I'm considering buying stock in the companies that make Imodium and Lomatil.)

    Even tho it's been emotionally and physically trying, I have strong faith - that's the only thing that's getting me thru this...if I didn't have faith, family, and great friends, I probably would have blown my brains out or swallowed a bottle of pills by now. I try to live day by day – sometimes hour by hour –and not project too far into a future I may not have. (E.G. I worry about the SEs from up-coming hormone therapy since they say that it can be just as bad as pill-form chemo, sigh.) None of us chose cancer - it chose us. We didn't do anything to deserve this horrible disease, but I believe it will make us all better people: more humble, compassionate and forgiving. We appreciate the little things a lot more now, and Romans 8:28 says, "And we know that all things work together for good to those who love God and are called according to His purpose." I don't know what His purpose is yet, but I know whatever happens, the glory will indeed be His.

    God bless you on each of your difficult journeys. I'll be praying for all of us.

    Here I am with my beloved rescue English Bulldog, Sofia, who brings great joy and comfort to my life...and my mascots, Olaf and Lou Seal (SF Giants).

    image

  • moderators
    moderators Posts: 8,744
    edited August 2016

    Lita, welcome to our community! We hate that you have to be here for this reason, but really glad you've found us and decided to join and share your story. Cute picture!

    Kind wishes,

    The Mods

  • goodprognosis
    goodprognosis Member Posts: 195
    edited August 2016

    Lita. What an amazing story!!

    Shame on your dr. I hope you now have gotten yourself a new one!

    That's a lovely picture of you and your adoring bowler.

    Thank God you finally have a diagnosis and are being treated - not like a hypochondriac - but like a person with an illness.

    God bless for your future, GP

  • JOANWILL55
    JOANWILL55 Member Posts: 3
    edited September 2016

    Hi. Pearlady. From your blog I gathered two things: 1) you had been athletic and health conscious prior to BC. 2) you don't feel any pains and discomfort even when the cancer has metastasized spread to your bones.

    As an athlete myself (at 66, I still run 30 miles a week at 7 mph on the treadmill. I also do two hours' elliptical, strenuously), I was diagnosed with BC last month. Like you, I lived an extremely healthy life (I don't drink or smoke. I don't eat grilled meat, bacon, packaged food. I seldom eat out), and came from an extremely healthy family (my father lived to 98). I did not feel any symptoms. So far my DX is stage 1 G3 (high grade). But I have been feeling aches in my liver, stomach and ears. I just had a CT scan 30 hours ago. I am still waiting for the result, very nervously. One lesion on my liver will change my stage from 1 to 4!

    I wonder if being athletic 1) has a disadvantage in detecting cancer, because we usually feel so good. 2) increases the chance of having BC because our breasts are dense (in my case, extremely dense). Not too many people are athletes. There is not enough study done on us. Maybe too much exercise actually is harmful. However, I must say the feeling after an hour's strenuous exercise is as great as climbing to a mountain top. I am addicted to that. I plan to keep working out during my chemo. My only hesitation is being seen bald in the gym. It hurts my pride.

    It is very encouraging to know that you have survived stage 4 cancer for so long. I hope you keep sharing you experience with us, good or bad. I want to learn from you, and all other members, about living the fullest life while having cancer. May God bless you all.

  • Longtermsurvivor
    Longtermsurvivor Member Posts: 738
    edited September 2016

    Hi Joan,

    Since you haven't been diagnosed with metastatic disease and are concerned, I suggest posting at this topic:

    If you are not Stage IV but have questions, you may post here

    Also, please don't guilt yourself for what you've done in the past. It's not fruitful for current or future health and well-being.

    Instead, focus on staying fit, not just with exercise, but by listening to your body's inherent wisdom about when to stop!

    If you are interested in the exercise-cancer connection, be assured that most studies and patient reports support the value of exercise in preventing cancer, recurrence and other health challenges!

    You might want to spend some time looking at the role of anti-oxidents and having your vitamin D levels checked, especially if you're exercising indoors or while wearing sun screen and sun protection.

    There are many ways to approach a cancer diagnosis, but looking back on the past to assign fault and blame will likely lead to sadness, sorrow and stalling, not productive engagement with what is.

    btw, I've never, ever heard of breast cancer of the ears! So I think you're safe on that score. ;)

    healing regards, Stephanie

  • 13kkan
    13kkan Member Posts: 9
    edited September 2016

    Hello all,

    My story starts in February of 2013 when I decided to get a small lump checked out. During previous 18 months I had been going for mammograms every 6 months for suspicious areas but was told they were benign. (I have very dense breast tissue.) I absolutely thought that tis small lump was going to be just like the other areas. Benign. They saw nothing on the mammogram but the lump was very clear on ultra sound. Turned out to be Stage IIIA. I went through most of the recommended treatments. Surgery, then chemo, then radiation. Was going to take the recommended hormonal therapy but at the last minute opted out. I had had enough and wanted to be done with it.

    At that time in my life I was on was on a great path. Traveled the world with my AF husband, I had raised two wonderful children, homeschooled them for 18 years, and was embarking on my new career. Every thing seemed to be going so well for me. I was barely starting my new job in administration at a new charter school, only 3 years in, and I got slammed with this diagnosis. The resulting surgery, treatments and radiation made it impossible for me to be an effective staff member. I had to resign. I felt like, and still do feel like a failure.

    After less then 3 1/2 years of dealing PTSD from treatment and anxiety attacks and chronic pain from my surgery. I am diagnosed now with metastatic disease. It's now in my liver, bones and tissues around my pancreas. So I am back in treatment. Recently had a port put back in my chest. (Back in 2013 when I completed a very horrible DD ACT chemo experience I could not get that sucker out fast enough.) July and Aug of this year have been a roller coaster of emotions. So many tests and procedures.

    How all I hope for these days is to be able to hold my first grandchild.

    I find that people who I once thought were friends do not know how to deal with me. So I choose not to tell how I am doing. I actually had one supposed friend say to me "Well...it's a good thing you have health insurance." How cold is that!


    Thanks for listening.

    Kerry

  • Lita57
    Lita57 Member Posts: 2,338
    edited September 2016

    Oh my, Kerry, I'm crying with you!!!

    It totally sucks.(I posted my story up above on Aug 17...there's a pic w/me and my Bulldog, so I won't repeat it here.) I am pissed as hell about all of this (I've also posted in the Anger forum, and won't repeat that either). There's NO history of this in my family, I ate well, stayed active, etc., etc., And now this!

    I had to quit a great job that I had for 21 years. I'm going to the company picnic tomorrow in my wheelchair to say goodbye to them all because I really don't know how much time I have left. I have extensive bone and organ mets, can't bend over or stand for very long because of all the compression fractures in my spine, etc. I am still shocked and devastated as I know you must be too, since you have to go thru this crap all over again. The woman who illustrated my two novels has just been dx'd w/cancer now, too. It's a frickin' epidemic!

    I hate it when well-meaning friends (who have never had cancer, BTW) say, "Oh, you're so strong. You'll get thru this..." No, I'm NOT always strong...sometimes I just want to throw tantrums and scream like a 3 year old. I cry at least twice a day...not just for myself, but for everyone who has this miserable disease, and also for my family. Who's going to decorate the house with autumn garlands, fall wreaths, and pumpkins when I'm not here anymore? My daughter is only 22 (in college) and she hates to cook, so who's going to make my traditional Thanksgiving lasagna from scratch every year? And let's not even talk about Christmas. I guess there'll never be another tree cuz I'm the only one who wants to get a real fresh one and decorate it.

    My faith is sustaining me somewhat, but this still sucks. You try and hold on...I will keep you in my prayers.

    (((Hugs!)))

    Lita

  • 13kkan
    13kkan Member Posts: 9
    edited September 2016

    Oh Lita,  I am so sorry to hear this.  Anger is my middle name too.  You go ahead and  scream and shout at the top of your voice!!  We grieve for the loss of a former life and I continue to learn to live with this new one. Anytime you need to get it out go ahead and PM me girlfriend. 

    **Bear Hugs**


    PS...I am going to check out the anger forum.  

  • Sophie_7
    Sophie_7 Member Posts: 3
    edited September 2016

    Hi... I am so grateful for this forum! I was diagnosed with Stage IV cancer with metastosis to sternum in November 2015. My original diagnosis was April 2013 at Stage IIB. Tumor was at 11:00 and up against sternum so likely mets prior to diagnosis. I had a bilateral mastectomy in June 2013 and experienced significant pain for a variety of reasons ( ie: significant side effects from anastrozole, frozen shoulder, then significant sternum pain for 9 months prior to eventual diagnosis of Stage IV met). I offer this information to encourage fellow survivors to be assertive with doctors, PAs and NPs (and even oncologists!) who say right away you have one diagnosis and don't order tests. My young Harvard Medical School educated oncologist diagnosed my sternum pain as costochondritis the first day I told her about my pain in March 2015. Following suit, the professionals at my primary care office ordered an X-ray only, and sent me to a physiatrist who ordered hydro and physical therapy and told me it could take years to overcome costochondritis.

    When I went for a routine surgical follow-up in November 2015 (mastectomy follow-up) my breast cancer surgeon asked me if they had ever ordered a PET scan or CT scan. Within one week I was diagnosed with mets to my sternum, which was ravaged with lesions. I underwent a sternotomy and reconstruction with an amazing surgeon at Massachusetts General Hospital. I receive all of my care at MGH Boston now. Even though my suburban oncologist was an MGH oncologist, she was young and new and was not exclusively a breast cancer oncologist.

    I am so blessed to have excellent health care in the Boston area. I encourage all survivors to get the best health care you can get and to assert yourself regarding tests and diagnoses. If something doesn't seem quite right, keep asking the questions and inquiring about further tests, treatments, etc. We alldeserve the best care we can possibly get.

    I don't know any of you, but I am an active participant in a support group and I offer you my thoughts, prayers and support as we take this journey together. There is so much joy in daily living and I hope each and every one of you is able to find that joy and experience it to the best of your ability each day and each moment.

    I need your support to stay positive and handle the pain, treatments and emotional hills and valleys that come with this disease.

    I am thrilled to join this forum and I send you all good juju!







  • Sophie_7
    Sophie_7 Member Posts: 3
    edited September 2016

    Hi Lita,


    You are in my thoughts and prayers. This disease does not discriminate. I totally understand your anger and also how hard it is not to be able to work. I hope you are able to find special moments along the way. I have sometimes felt as though I don't want to be here anymore... That I could just fade away and go into a long sleep because I am tired if the pain. But I know my family wants me here as long as I can be so I stay strong for them. One thing that helps me is trying to do little nice things for them with the strength I have. Prank you for sharing your authentic feelings. We often don't like to tell others when we feel angry but it is a part of this. I look at old people sometime and almost want to say to them that they have nothing to complain about because they were given the gift of old age.

    Just wanted you to know that I am thinking of you.




  • moderators
    moderators Posts: 8,744
    edited September 2016

    Sophie-

    We want to welcome you to our community, and thank you for sharing your story with us. It's not easy, but this journey is made a little more bearable when you have the support of other women who've been down this road. We hope you find that kind of support here. You are not alone, and you have this entire community with you!

    The Mods

  • Sissys
    Sissys Member Posts: 1
    edited September 2016

    my mom had a mammagram in June this yr found 2 lumps and she was scheduled to go go back this sept..sadly to say we found out she had stage 4 breast cancer though another dr cause she ended up in the hospital around July 1 2016 and was told around the 4th she had the cancer in matestised and she passed away July 22 2016..I don't understand why her dr hadn't found anything when it had went all over her body..I'm so mad and can't get any answers.. I'm sorry for ur loss

  • Longtermsurvivor
    Longtermsurvivor Member Posts: 738
    edited September 2016

    Hi SissyS,

    How very sudden and awful for you!

    You might not get answers from your mom's medical team, but I hope you find comfort here and with bereavement counseling.

    This hurts so terribly, of course you're mad! And sad! And confused and everything else too.

    I am sorry for your loss, SissyS.

    Sending waves of loving kindness, Stephanie

  • Becs511
    Becs511 Member Posts: 118
    edited September 2016

    Not sure if I ever posted my story here before, but here is a link to it on the Young Survivors Collation page:

    My Story

  • wam
    wam Member Posts: 98
    edited October 2016

    My name is Wendy. I am 62 years old. I have four grown children. I noticed lumps in both breasts in 2015. I had a malignant phyllodes tumor on the left and an IDC on the right with seven nodes involved. There was extra nodal extension and unclear margins. I had several inframamary nodes light up and i had a subclavicular node. All really bad prognosticators. I am triple positive. I had taxotere, Perjeta and Herceptin for a year. My tumor markers went way up so we scanned. The "funny thing" was that all the nodes they set out to treat are dead but there is new cancer that progressed during treatment. This is another bad sign! I am just on 2.5 mgs of Letrozole for first line treatment. I have hope for many good days. It is so hard to see that Stage IV by my name.

  • arielsimonne
    arielsimonne Member Posts: 1
    edited October 2016

    Hi,

    I was diagnosis as stage IV as Triple Negative Breast cancer and am 5 year survivor. My treatment was Taxotere, Carboplatin, and Bevacizumab for 4 month's.


  • moderators
    moderators Posts: 8,744
    edited October 2016

    arielsimonne and Sissys, welcome to Breastcancer.org and thank you for sharing your story!

    Best wishes,

    The Mods