Would you share your Stage IV story with us?
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Hi all,
My name is Cat ( short for Catherine) I have recently been diagnosed with Stage IV Bone Mets.
But my story is pretty long, you see this is my third battle. In 2006 I was diagnosed with Stage 2A ER+ BC after finding a lump in the inner upper quadrant of my right breast. I elected to have a lumpectomy with rads and Tamoxifin (as I was pre-menopausal). I scored a 0 on the Oncotype rest so "no chemo", I continued to take my drugs and get my mammograms religiously. I joined a local support group which really helped me.
In spring of 2012 I found a new lump in my good (left breast) also in the inner upper quadrant. I had had a mammo only 5 months prior- what the heck was this? BC! A new primary! another lumpectomy, and rads and this time got a Mammaprint - that scored me moderate risk- so I opted to go for the chemo too. My Staging was again 2A- neg nodes- great, right?
Chemo was initially horrible- after 1 dose of Taxotere /Cytoxan I had an extensive rash, 30+ mouth sores, dehydration, needing rehydration X 2, 11 days of diarrhea ( the really bad cramps gross kind) and the constipation, necessitating a change in my treatment plan, and a pause for an extra week in between.The mo changed me to Adriamycin/ Cytoxan which I completed with slight side effects ( mild constipation)
My radiation onc suggested that due to where my lesions were located I most probably was exposed to a high dose of radiation as an infant when I had pneumonia and this might be the cause. After all I have 22 female cousins, 5 sisters, and no other breast cancer.
Again I took my anti estrogen medications although I tried them all over the years due to intense side effects.
Now I left out that in 2012 I started having coccyx area pains. I got PET scanned and bone scanned and all was normal, they sent me to a pain specialist- he gave me spinal injections of all types with almost no effects, he put me on time release hydrocodone and I was able to work and function.
But winter of 2015 I was at my wits end with the butt pain. My oncologist suggested I get my coccyx removed and referred me to a neurosurgeon. I was teed up for CT GUIDED COCCYX REMOVAL surgery in Feb.
Alas in Feb after the labs chest X-ray etc I got pneumonia and the surgery /procedure was cancelled.
Then in this summer after recovering fully and enjoying a nice vacation I called the neurosurgeons scheduling nurse to again "tee me up." She said I think you need a new CT scan of your pelvis (sacrum/coccyx)I asked my mo to order it via email.
How lucky I was to get this test! How shocked the mo and I were to have it reveal 2 small lesions."can not rule out metastasis" it read. Fast forward a PET/Bone scan no finally a bone biopsy and I got my diagnosis - ER+ metastatic breast cancer..
Luckily these 2 (<2 cm) lesions are the only ones so far.. Treatable with rads.
I started radiation treatment today. Upon completion of rads in a month I started Fulvetrant and Ibrance, a new oral medicine- That was part of the Paloma 3 trial that ended March 2016 with great results.
I am just finishing my first cycle and tolerating it well so far. Wish me luck in this treatment plan.
About me personally , I am the mom of 2, step mom of 2 and Nana to 12, I am a registered nurse that works as a sales rep for Baxter healthcare and getting ready to retire. I have a wonderfully full life. Have visited Europe twice. Have a wonder husband and pets ( dogs, cats, horses) that keep me entertained . I am also the facilitator of that local BC support group X 5 years and have many supportive friends and acquaintances. I have decided to take the radiation month off from work- I need to take it easy and just get well. I am hoping it will get rid of this awful pain, they tell me it will. I should see improvement in 2 weeks.
So I dive into reading and knitting & crocheting for my darling grands. And I decided to take an iPhone photography course I wanted to take for a while
I hope all of you have the best results to your treatments. I wish you all the best.
Get me off of this merry go round
Cat
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I am new to this forum. I am 67 years old and was originally diagnosed with Stage III-C, ER+, HER2- breast cancer in October, 2006. I had a mastectomy on the right side with removal of 19 lymph nodes, followed by AC/Paclitaxel chemotherapy and 35 radiation treatments. Was on Arimidex originally but had such bad side effects I was switched to Tamoxifen. On Tamoxifen for 5 years (the protocol at that time). All well and good until I became short of breath in August 2015, which became progressively worse and was diagnosed as a pleural effusion of the right lung in March, 2016. Eventually diagnosed with Stage IV Metastatic Breast Cancer in March 2016. I have mets to my right lung, liver, spine. Currently on Letrozole 2.5 MG and Ibrance 125 MG. My tumor markers are down within the normal range now, my liver functions are "perfect" as my oncologist says, and I seem to be tolerating the treatment well, with the usual fatigue and I also have pain in my back from the mets there. I also receive Zometa infusions once a month with no side effects. Recently had 11 radiation treatments for the spine pain but haven't seen much improvement from it. I am fortunate that I have a grant that picks up part of the cost of the Ibrance that my insurance does not cover. I'd like to hear what others are dealing with living with this disease and what treatment regimens have worked for others. Thank you!
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Welcome Wallaby, sorry you've joined the Stage IV club, the club no one ever wants to join.
I'm on Xeloda, and I still have considerable back pain, but that is probably attributed to the other issues I have. Along with bone mets to spine, I also have degenerative arthritis in my lumbar spine, four bulging discs, and 5 compression fractures.
It may very well be that you have other issues in your spine as well. Also, it can take a while for the spine to heal after radiation, so you may have some residual pain from that. Others may want to chime in and offer their two cents as well. I have terrible SEs with the Zometa infusions - felt like I had the flu with aches, diarrhea, the whole nine yards. But everyone reacts differently.
Once again, welcome, and keep us posted,
Lita
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Wallaby-
We want to welcome you to our community here at BCO. Like Lita said, we're sorry you find yourself here, but we hope you find the support and encouragement you need in these forums. We're all here for you!
The Mods
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Moderators wrote:
Hi Everyone,
Metastatic Breast Cancer Awareness Day is Thursday, October 13th and for this we would like to share inspirational, hopeful messages on our Facebook page and in our community.
To help us with this, would you mind completely this sentence, and provide your screen name, age, and where you are in the world?!
"I am living with metastatic breast cancer and I still . . . " (e.g. play with my kids, love gardening, plan on...., expect to..., etc.)
(Screen name, age, where you live)
Please Pm us with your questions and/or your quotes. Thank you! The Mods
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Age 59 now, diagnosed BC 2012, refused all standard treatment. Since then I have done an ENORMOUS amount of reading and research.
Shortly after diagnosis I read Jane Plant's book (Your Life in Your Hands) on dairy & BC-- just AFTER my own observations of how dairy products and chicken seemed to produce symptoms. So cut out the dairy(and chicken) March 2013. That also led me to the China Study, then to other books and websites [drmcdougall.com]. I generally try to follow this plant-based way of eating, but still had occasional small amounts of meats and oils. Lowered cholesterol enormously, have lost about 70 pounds, and overall have always been extremely healthy.
Was doing fine until last fall--when I returned to eating too much of things I knew I shouldn't have (meats & fats)...Really bad winter, lots of pains, moving from one area to another...trouble bending over, trouble breathing, couldn't lie down flat (had to sleep sitting up)...lots of extreme pains ..Really bad winter...ended up in ER with pain and difficulty breathing, they did a cat scan and said cancer had spread to bones.
In April, finally went to see oncologist, who immediately recommended lots of drugs, even though she actually said, now being stage IV, 'this is going to kill you' and suggested I contact hospice. I did finally agree to try just letrozole, about the same time I started taking curcumin95. By May I was on hydrocodone and muscle relaxants every four hours, using a hospital bed, and not doing much of anything except reading, watching movies, or sleeping.
But since that ER visit I was being much more consistently compliant with eating a starch-based, plant food diet, with added natural supplements. By July, I was back in my own bed, in my own house and beginning to do most of my usual activities, which includes gardening and even cutting grass.
PET scan end of Aug/ oncologist appt Sept 14. Cancer has regressed "significantly", many spots are gone, the rest are reduced in size 'considerably'. Lymph nodes and even the original two lumps are much smaller and 'softer'. I still have some pain in middle/upper back, but seldom have to take any pain killers at all. ( Cancer markers in blood have dropped from 216 to 81; and 191 to 82.
I actually stopped taking the letrozole 3 days before my appt.. Probably because I've lost like two inches in height & now have that 'hump' near top of spine. I am in much less pain since I stopped taking the letrozole.
So, was it the letrozole, the curcumin and other supplements, or changing my sleep patterns back in April? Or just changing my diet back to consistently starch/plant based? Don't know for sure, but I do know I'm not messing with my diet again!! I can always tell when I've eaten something I should not have had. Currently back to only natural treatments and feeling better every day.
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Hi mapat, good to meet you. I too have walked an unorthodox path with breast cancer. Do take letrozole/femara now because it helps with my lung problems (not liver) and no unwanted effects.
You might appreciate this other woman with MBC who walks her talk:
Author Archives: Amy Berman
Also, the bco forums on CAM and alternative approaches might be good communities to check out too.
https://community.breastcancer.org/forum/79
https://community.breastcancer.org/forum/121
There may be conventional approaches that interest you, so this forum's bone mets group may be of use.
https://community.breastcancer.org/forum/8/topics/...
sending warmest regards, Stephanie
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Hi Y'all,
I was first diagnosed in 2003 when I was about to turn 51, after a lifetime of glowing good health, no hospitalizations, never the one to gets colds or flu. Quite a shocker! What I remember from the initial diagnosis and treatment: Borderline stage 1-2, lumpectomy with sentinel node biopsy (no spread) , radiation, Tamoxifen. It was years before I stopped thinking about breast cancer every single day.
Something I discovered about myself that first go-round. I hate -really hate - being perceived as a sick person and treated as an invalid. The " oh you poor thing" looks, and arm clutches made my blood boil. I'm a private person, introverted, and felt invaded and on display. It bugged the bejeezus out of me!
I had follow-ups from time to time, whistled past the graveyard, and life went on.Cut to 2015. Weird fatty deposits like lipomas or cysts suddenly started appearing on my torso, a couple on my left arm, one on my right side near my ribs and one on my upper right arm. I ignored them for awhile, googled and didn't see any signs that they were cancerous etc. I tend to blow things off. Nah, everything is fine. My husband seemed unconcerned, and like me, he thought they were cysts. I felt fine. Then, the one on my upper right arm started growing and growing and growing...it was almost golf ball-sized before I went to my dermatologist. She immediately got an appointment for me the next day with her personal surgeon. By the time I had the surgery, more lumps had appeared, including a fast-growing one on my neck. The surgeon removed the golf-ball, a small one on my left breast (I thought that one was old scar tissue from the 2003 lumpectomy) and the one on my neck. All came back cancerous, Stage 4 breast cancer. It was in my lymphatic system and one lung. Wow!
I had my first appointment at MD Anderson on October 23, 2015. A few days before my first appointment, I got laid off from my job of 14.5 years. I was the breadwinner of our family. My hubby is self-employed, so mine was the only steady income and source of insurance. We are both 64 and have no savings left at this point. Yikes!
I had AC - good old Red Devil - chemo from Nov-Jan and tolerated it very well. Lost my hair, had little fatigue, intermittent constipation ( I learned how to forestall this) and a couple of short bouts with mouth sores. All in all, not too shabby. My scan and bloodwork after the rounds were completed showed immense improvement, plus I could palpate some of the remaining lumps; they started melting away after the first infusion.
I have been completely stable on Ibrance and Letrozole since February. My tumor markers continue to decline. The mets to my lung have cleared up, although my doctor now says that may have been inflammation. I'm not NED, and I always have low neutrophils, even though I'm on the middle dose of Ibrance, 100mg. I feel good...normal even, except my stamina is not great.
If I didn't know that I have cancer, I wouldn't know that I have cancer. I am very clear-eyed and pragmatic, so I have no illusions about what the future holds. It's not a negative view; I'm just realistic and living life. I am happy, even living under the Sword of Damocles.
I have a very sardonic, black sense of humor - so does my hubby - and that sees me through! We have a large critter family of cats and dogs, our beloveds, that keep my busy-busy, entertained and focused not on myself. You never come first if you have a cat. Or several. My darling son, daughter-in-law, and 22 month old grandson moved back here from another state, so we could all see each other regularly!!! YAY!!!I must admit, that although I'm not afraid of death, I am afraid of destitution...for myself and for the aging husband and critters he must care for that I will leave behind. That is my only fear, although we do have family members helping us out and I am bringing in a little income + SSI.
Onward through the fog!
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Katty,
Lovely post. Welcome to the boards!
Hoping that everything stays stable for you...no progression. It's wonderful not to have Mr. C dominate your life. That's a victory you can claim.
Lita
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Hello - I have graduated. Yet this is something that I really did not want to belong to and never wished for anyone either. Life happens. Stage IV breast cancer, just found out about two weeks ago. Original cancer discovered in summer 2014 stage 3b: surgery, chemo and radiation. Anastrozole failed after 1.5 years. I have a bottle of Ibrance, which I haven't started yet. Suppose to begin coming Tuesday. Mets are in the liver, some in spine and some groundglass nodules in the lungs. Though I know we all are going through this unpleasant road, it still feels semi-unknown, lonely and unpredictable.
"It rains on the just and the unjust." Acceptance makes much easier to handle this disease. Just pray that the doctors are capable and sharp to catch everything on time. I love to mountain bike where I noticed my breathing was short as I was riding uphills. I told my Dr. something was wrong because I could not ride up the hills like I usually do, I can't breath. And sure enough. Something was indeed wrong. Listen to your body for any sign. Mine was telling clearly. All I can do now is hope. That is all.
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hi there I'm Amanda, I'm 33 from Australia and found out about 2 and a half months ago I have stage 4 metastatic breast cancer. It's turned my life completely upside down. I'll start from the beginning. I work full time at a supermarket I'm 2ic of the delicatessen so heavy lifting is what I do, I started getting really bad back pains about a year before diagnosed they were continually on and off. Anyway every time the doctor would give me Tremadol and penadol forte, every now and then suggest I see a physio and send me on my way, after my, what felt like, 20th visit my mum grew tired with the laziness of the doc and tells her she wants an MRI for me so doc agrees. Had the MRI and they found a mass on my spine to which, on the Friday, my dr referred me to a neurologist but I couldn't get in for a month. My mum worked at a private hospital and on Monday begs another neurologist she knew to see me to which he agreed so we got the referral changed to him. At this point I couldn't walk at all I had to hold on to somebody to get anywhere and the pain was excruciating. That afternoon He rang up and said he wanted to see me right away to which I struggled to dress and got mum to drive me straight up. He took 1 look at me and said I will be admitted to the public hospital now under him. No worries so off I went to hospital I was in there a week having scans and everything else and was told my c 11 and 12( I think there called) in my spine are completely destroyed and they need to operate, the Monday 8th I was operated on it took 9 hrs and 4 litres of blood but it was done, I spent 5 days in ICU and the day I was moved to a ward we had a family meeting called up in which I was told the mass in my back was cancer and It was secondary therefore I had to have biopsy on my Breast where they think the primary is. So more poking and prodding and then it was confirmed. I was told I have stage 4 metastatic Breast cancer, my whole world collapsed people were talking and I had no idea what they were saying was just something I couldn't comprehend. As I was trying to soak that up my main goal at the time was walking again I was so determined I wasn't going to be in a wheel chair I pushed myself a little harder and with in 4 weeks after the op I was walking on my own no frame, no help, nothing. I was so excited and the all the nurses, surgeons and specialist were all shocked to see me stand up and walk un aided, they thought I would be wheelchair bound or best walking with a frame. So that to me proved I will get through this and I have tried to stay positive, coming home was hard to do as I had to stay at my mothers for a few weeks because I was starting radiation and didn't know how I would react and my boyfriend was at work till 5 in the afternoon so I was home alone all day there. I stayed there a week into my radiation and decided to come home as mum returned to work the second week in and as u all probably agree there's nowhere more comfortable then your own bed. So I've been home ever since and it's been driving me into depression as I've come of a full time pay to a government pay which I get less a fortnight then I earned in a week. So that's been hard plus the tamoxifen I think has a lot to do with my emotions, I've come from someone who never cried to Someone who cries at least every 2 day. It was also hard being told I will never be able to have children, before all this me and my boyfriend were trying for a baby so that was like a huge kick in the guts. I find it hard to talk to any of my family or my boyfriend cause as soon as I say something sad that they don't want to hear there mouths shut or subject changes I guess that's why I joined here so there are people who know what I'm going through and can relate to my feelings and are willing to listen, I've tried being positive but I find it hard at times especially when the bills are piling up and u can't afford them, I get in my head wit ' is this how I want to live the rest of my life, struggling' I don't know if I'll ever get back to work permanently I'm hoping I can at least find something part time cause I really hate sitting at home. I've seen the chemotherapy specialist twice since I was released from hospital and both times he was happy with the way the tamoxifen is working so no need for chemo yet. the neurologist didn't want to see me for another 6 months, and the radiotherapist was happy with the outcome and didn't need to see me anymore. So that my story so far I'm sure there's going to be a lot more and a few years on top of that. I will not give up my fight!!!
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Hi Mandy. Sorry you are here, but this is a great group for support. You are not alone. We talk about everything, and we even laugh some times. I am shocked. You have been thru so much already. I HATE this damn disease...it robs us of so much!
(((Hugs)))
Lita
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thank you Lita it is a a..hole of a disease and I'm noticing lately there are way to many people getting it these days just wish they could hurry up and find a Way to get rid of it! Xo
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Hi Mandy ,
So sorry to read all you've been going through ...especially at such a young age ..
I'm from Brisbane area ..there is a a thread here on BCO called Australian Sisters ...wondering if you'd like to come join us ?
Hugs
Lucy
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Mandy-
We want to welcome you to our community here at BCO, and thank you for sharing your story with us. We certainly understand all of the emotions you've described, and we know how life-changing this diagnosis is. But just know, you are not alone. We're here with you and for you!
The Mods
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Thank you for allowing me to join and making my story matter. In June 2012, I found a good size lump myself. How I missed that size lump is somewhat beyond me. Sixteen months before finding that lump, I had lost my oldest child a son at the age of 31. Actually, I missed that lump because I was not taking very good care of me. Child loss is horrid. After a diagnostic mammo, ultra sound and several biopsies, I got the dreaded words we all have heard on here...You have breast cancer. My bc was late stage II IDC and was estrogen-receptor positive. There was some DCIS noted in the right breast, also. Also, discovered clusters of calcifications in the left breast by mammo. Calcifications came back benign though. I had a right mastectomy on August 2, 2012. Found another tumor hidden away in the sentinel node. So on August 16, 2012, I had removal of 10 auxillary nodes. Nodes did come back clean of cancer. I had taxotere/cytoxan combo for chemo. Doctor wanted AC, but heart echo came back off by 1 point, so onc did not feel comfortable with the AC. Did 4 rounds of the TC. Had 30 radiation treatments to the mastectomy area and under right arm.
On my birthday May 4, 2016. I then receive the diagnosis that I had mestastatic breast cancer. I just happened upon that diagnosis. My sternum got to hurting. Thought it felt like a bad case of bronchitis or a pulled muscle. Seriously. It was hard to distinguish where and what the pain was .I was prescribed an antibiotic and sent home. Matter of days became some of the most horrendous pain of my life. I begged and cried. And I have a high pain tolerance. Next, I am sent for a CT scan with dye contrast. Indication of mets to the sternum. Biopsy confirmed that there was breast cancer in the sternum. I then proceeded to have 10 rounds of radiation to the sternum. Thank God the radiation stopped the awful pain. Anyway, I have mets to the bones and apex of right lung. Next we are getting ready to radiate lumbar 5, due to the pain factor again. Bone scan revealed multiple areas of probable cancer. Right hip and pelvis area, other areas showing up the spine, right rib and then many areas now of osteoarthritis.
Treatment has been Femera, which I am tolerating quite well. Just mood swings and hot flashes. So, I am apologizing a lot while roasting. LOL!!! I was on 125 mgs. of Iberance. The Iberance was not tolerated very well. So, the dosage has been lowered to 100 mgs. I am on an excellent nausea med. I am already sick again while on the new dosage of Ibrance. Thrush of the mouth and just an awful sore throat. Doctor has me currently on an antibiotic. I am eating pretty good. I though fluctuate on weight. I am one of these smaller women, that has to struggle to keep weight on. I rather have some extra weight, so I am able to fight the cancer.
I never totally bounced back 4 years ago after treatments were finished. Now I can tell it like it is since I am stage IV. You know how it goes. Don't stress about every little pain or ache, don't worry about the fatigue it is normal, don't worry about test results so much,all that stuff we get told. I can say....SEE I TOLD YOU ALL I WAS RIGHT ABOUT HOW I WAS FEELING!!! I cried probably close to 2 months on and off. I then went through an angry period. Now I have accepted it. I have accepted it though on my own terms. I am going to still fight until I can no longer fight. I have faced adversary before. Losing my child and then battling cancer 3 times...I had uterine cancer in 1990!...has taught me how strong I am and how much God gets me through. Bless all you women and maybe some men on here that are reading this. Keep up the spirit and fight.
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I was diagnosed with stage IV breast cancer in April 2016. Invasive ductal carcinoma with spread to liver and rib.As the onologist said he could not cure me, (they gave me a few months to live) and the surgeons saying that surgery not indicated as it had already spread, I used my nursing background to research other treatments. After going through several detoxes and various natural therapies, my Ca15.3 cancer marker is down from 64 to 21 (normal) and I have so far resolved 2 small liver tumours and shrunk the 2 remaining by over 50%. My breast and rib lesion are unchanged, and I feel and look well ( much better than before diagnosis) and jog daily. If anyone is interested to find out how I did this I am happy to share it
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Pipptone, I have liver and bone mets. I would love to hear what you did to make a difference.
Please PM me.
Thank you, Melanie
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lump found 12/1995 er+ pr+ her -
mastectomy 1/1996
Tamoxifen 3 yrs
reoccurrence 2005 lumpectomy, radiation
Arimidex 8 yrs
stage !V 3/2013 Flaslodex for 1 yr
Afinitor & Aromosin till 9/20/2014
Halaven start 10/3/2014
Tamoxifen
CMF start 9/015 - 2/2016
Doxil /2016 - 4/016
Gemzar & Carbo start 4/016 - 10/16/2016
Will start Taxol 11/23/2016
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Hey all,
Not gonna lie this is not the easiest thing to write.
I was Diagnosed with MBC on back in may, however my cancer journey did not start there. I was diagnosed with Hodgkin's lymphoma at 10 years old. . I received chemo and radiation for almost a full year before I was told I was in full remission. on my 12th birthday I was diagnosed with AML leukemia, I underwent extremely high dose, chemo, full body radiation, and a Bone marrow transplant.
I had noticed a small lump in November last year, I had told my Oncholoigist about it and was sent for an ultrasound right away. because of were it was located, and that it was relatively small, it was next to impossible to see it. I was told not to worry about it. In January I had a fair bit of pain in my left hip, it went away periodically, and I figured that it was probable due to my backpack being full of texts books all the time.
I was scheduled for a breast MRI in may. I was told in my appointment before that I would start screen for breast cancer the year I turned 25, because of how high risk I was. May 11 I walked into the hospital with just the MRI Booked, and I walked out after the MRI, My first Mammogram, an ultrasound, and a biopsy. At this point I knew that I had cancer again, it was just a matter of an official name and staging.
I was referred to a surgeon right away, and then had staging tests done. it was the surgeon that told my that I had stage 4 cancer, and that it had spread all over my lymph nodes,, my hip, spine, and lungs. I also found out that surgery would do me no good. I was then referred to a new oncologist, as I am no longer able to be treated in the pediatric ward. The one piece of good news was that I was ER+/PR+ woot no chemo for me at the moment!
I'm finally at a point were I am starting to process what the hell happened these last 6 months. I thought sharing my story and reaching out may help, sort things out. its also nice to know that I am not alone.
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Oh Iammenotmycancer, you have been through so much in your young years. We are happy that you felt comfortable to share your story with everyone. We are all here for you. Are you going to start some sort of treatment? Did you already do chemo in the last 6 months?
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now that I read my post it needs some amending as Solar one trial got filled as I did the pre-tests.
So we, my medical Onc and I decided to follow the Paloma 3 treatment plan, it just finished in March, and showed great results . So here I am just finishing my first month of the newest treatments for ER+ BC that occurred during adjuvant estrogen therapies. So far, so good. Faslodex and Ibrance it is...
If you allow me to edit the text I can add these changes.
Thanks
Cat
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I love your positive thinking, I wish I could be as strong as yo
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As I read through this entire thread off and on over the course of today, I have alternately laughed, cried and smiled at your stories. Taken together, they are like a stormy summer's day alternating between bright sunshine and black thunderclouds racing across the sky.
My journey with breast cancer started in the late spring of 2014. I was just going to bed late one night, when I happened to run my fingers across my right breast. There was a hard lump just under the surface where there hadn't been one before. That brought me up short and I asked my husband if he could feel it. He could. I estimated it to be about the size of a fresh soy bean. We decided that I would keep an eye on it and mention it when I went in for my women's health check-up at the end of June, just before my 37th birthday. I was really putting it off because I didn't want to find out something was wrong. The doctor's office put off my appointment until after July 4th, so it was probably nearly two months from the time of discovery until I mentioned it while being generally poked and prodded. The nurse practitioner took me very seriously and sent me for a mammogram. It was the first time I ever had one. I explained why I was having the mammogram and they put a marker on it so they could find the spot. Even though I could feel it on the surface, they never would have spotted it if I hadn't told them where it was. Since I had to travel a long distance to a hospital that would take my insurance, they got the radiologist to look at the images while I was still there. That led to an ultrasound before I left that day. A week later I was back for a biopsy. From that time on, I had a pretty good idea what the diagnosis would be, as this 1 cm tumor began to act up and cause a lot of pain.
I think my doctor didn't quite know what to do with me. Most of his patients have cholesterol, diabetes or digestive problems. I'd been seeing him for undefinable rheumatoid arthritis like symptoms for two years. He should have recommended that someone come in to his office with me. Where we live, they never give us bad news over the phone. Maybe it's because they have a lot of Amish patients who don't have phones. Anyway, I went to find out my biopsy results (they made me wait a week!) and they called me in and put me in a treatment room right away. Then I had to wait 40 minutes alone for the doctor to actually come in and talk to me. It was strange, but I knew from the way all the office staff and nurses treated me that day. My poor doctor. He didn't want to be the one to tell me, but he gave it to me straight. He apparently assumed that all I would need was a lumpectomy. This was a Thursday, and he got me an appointment with a surgeon the following Tuesday. He didn't explain anything about the road I had just embarked on, but that may be because he really didn't have any idea. Curious, that, when his wife is an oncologist--my oncologist!!
It was my surgeon who answered all my questions before I asked them, went out of his way to provide me with as much useful information as possible so I could make informed decisions, and actually got me an appointment with my first oncologist. I've seen three now, but they are all in the same office. They work out of Fort Wayne, Indiana and come out to small rural clinics. I did the rounds of MRIs, more biopsies, another mammogram. The hidden catalyst for all of this was in my family history, some of which I was too young to have known about. My aunt and two of my cousins have had breast cancer and are all still living. The most recent one got tested and found out she was BRCA1+, so it was decided I should be tested. I also am BRCA1+. That, coupled with the fact that my biopsy indicated the cancer was triple negative, helped me make up my mind that I wanted a bilateral mastectomy. I surprised my surgeon when I declared I didn't want reconstruction. On September 5, 2014, I went into surgery as a dear friend was laid to rest, having lost a nine year battle with breast cancer. She seemed to radiate sunshine. I try to do the same.
A month later I got my port and started chemo a week after that. Four doses of AC and the 12 of Taxol. I'll say it now. I love my chemo nurses. They are a wonderful group of women. My first one had been a cancer patient as a child, so wanted to be one when she grew up. The one I see when I go to see the oncologist has been at it for 30+ years and is absolute sunshine. I didn't have a lot of trouble with any of the chemo. Sure, I lost my hair, and I practically shut down my business for 6 months, but I know that I got away with it easy. When it was all over, I had my ovaries removed. Everything had shut down and I didn't see the point in more hot flashes than necessary. It was rather strange to age that much biologically in so short a time. I love being off the hormone rollercoaster, though.
This autumn, I and my fabulous health care team quietly celebrated the fact that I had come through two years with no apparent signs of recurrence. I saw my oncologist on the 5th of October (my younger son's 13th birthday) and everything seemed fine. Then, on the 6th of November, while driving I was massaging below my right collarbone because the area was sore. There it was, a lump about 1 cm long that was easily distinguished. It hadn't been there before. My heart dropped. If I had been alone in the car I would have cried. I nearly did anyway.
When I had the biopsy, I knew for sure the cancer was back, or rather had never actually left. I also knew that it had probably spread far and wide. This was shortly confirmed by the results and the PET/CT scan that followed. December 7, two days after my older son's 17th birthday, my oncologist told us (I took my dearly beloved with me) that the cancer had metastasized to my right lung, along with a number of lymph nodes and possibly one of my ribs. So far, my liver is clear. What a strange day and a weird feeling, when your chemo nurse cries when she hugs you. It isn't really very encouraging.
This all seems so unreal. I'm not in shock any more, although I certainly was for about 2 weeks. Our family has made some decisions that will drastically impact our future, but they had to be made. My husband and I have had our own business for the past 12 years. We have worked together nearly every day and spent more time in each other's presence than many couples get in a long lifetime together. Now we have decided to mostly close down the business, at least the part that is dependent on me. We already had to do that two years ago for a few months. This time there is no "normal" to look forward to. I have hand decorated ladies' tops for more than 10 years. During recovery, I gained an enthusiasm for the business I had never really had before. Now, I am closing it down. Tomorrow is the last day my shop will be open. I had new designs and great plans. Now they are laid aside and I am focused on sorting out the remains of a business. I do not want someone else to have to do it some time down the road.
I mentioned my family. I am married to a wonderful man 23 years my senior. We have two sons aged 13 and 17. I only mentioned the age gap between us because we have always had it in the back of our minds that I might some day be left a widow with young children. We never seriously considered that I might be at risk of going first. The boys were emotionally up and down for a couple of weeks, but have accepted what cannot be changed. At least for now. I have never seen my husband cry for any reason in the 21 years I have known him. It is a truly terrible thing to hold him in the dark and know that he's crying. No one is promised tomorrow, so make the most of this moment.
It is my intention to be a cheerful person, and I usually am, but there is one thing that really gets to me. Why does everyone have to tell you about their friend who had breast cancer 20 years ago and how well they are doing? Or try to put you in touch with someone who used such and such a product/food/etc to marvelous effect? I smile at them and thank them for the stories and information. I know they all care about me and want to encourage me (and themselves that I'll be alright). I'm a very down to earth and rather blunt person, so I don't tend to beat around the bush. It makes people uncomfortable when I talk honestly about the situation, but they might as well know the facts. It's up to them whether or not they accept them. That probably seems harsh to some people.
The one thing I have found really hard to deal with is telling people what has happened. We are a very open family and let our many friends and relatives know the joys and sorrows of our lives. I send out an annual letter every Christmas. There has not been one this year. It will go out in the new year, and it won't end on a happy note. Well, I'll do my best to cheer everyone up. I had to call my parents and my sister to tell them the news. It was a terrible experience that can only be compared to calling up relatives to let them know that you have died, except that you are the one making the call. There is no other thing to compare it to. I remember vividly when my grandfather died when I was six. My mother called all the relatives and had to tell them. I sat around the corner on the stairs and listened when I should have been in bed. That's why I know what it is like. The worst has been talking to my brother on the phone. He is twelve years older than me, has been in prison for 11 years and has another 14 years to go. He also does not have the peace in his heart that I have, so he has a hard time accepting the situation. Maybe needing to be there for all these beloved people keeps me from getting selfish and hardhearted. I hope so.
Thanks for listening to my story. Hopefully some part of it helps those who read it.
Raewyn
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Dear Raewyn, we're sorry you had to post in this thread... but wanted to say thank you for sharing your story here, it will sure help others under similar circumstances.
Wish you well with treatment! Let us know how you're doing, we're thinking of you!
The Mods
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I wrote yesterday about closing down my business. Some of you may wonder why. It is because I have other things I want to do in life, and the business takes up too much of my precious time. I'm putting my house in order so I can be spontaneous on occasion.
Here are a couple of pictures of me and my family to go along with my story.
With my beloved David.
I'm so proud of my sons.
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A beautiful family, rgc77!!!
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Here is my stage 4 story. I was on a Transatlantic cruise and on Day ,9 in France I suddenly could no longer walk. The ships doctor said it was my knee. I was taken off the ship and after spending 3 nights in a Paris hospital who did not diagnose it either. I was sent home with a nurse escort by my travel insurance company. I went to see a orthopedic and he took many MRI,sand CT scans. He told me to come in non weight bearing. He then told me that I had a tumor in my FEMA.He said that had to come from somewhere else. I knew there were things on my niples ,but I ignored it because my husband had passed away and all I wanted to do is travel. I had it for 5 years before being diagnosed so my metastatis was diagnosed before my breast cancer was. I had surgery on my hip. He removed the tumor,and put in a nail. I also had radiation on my hip. I was not able to walk then but I am walking with a cane now, but can walk without it. I had a massectomy in Dec and I finish radiation tomorrow on the breast. I am taking hormone therapy but no chemo and since I was walking around for five years with no treatments ,my doctor said I am far from typical and that my cancer moved slow. My oncologist really expects me to go into remission.
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My Mother recently Diagnosed with tnbc tumor size is 37*36 mm.Her Sentinel Lymph node biopsy was done. no lymph node was found positive.Dr decided for chemo and then lumpectomy. v were quite calm because it was stage 2 A so far. but suddenly dr said since its tnbc v should do CT scan and bone scan. Bone scan was okay but in CT Scan a 4 mm hypo-density is seen in left lobe of liver.now 2 cycles of chemo are done and v r like what ? suddenly from stage II A to IV. but Dr said its not confirm to b malignant yet Ultrasound of liver was done but ultrasound could not detect the leasion as it was very small sized only 4 mm now dr said MRI should be done to confirm it. now v have an appointment for MRI on 27th Jan. I hope its not malignant otherwise it ll b very disappointing as it is already tnbc. plz i need a few words from all of u......if its stage IV then how many chances of this to be treated ? em really disappointed and i need a few words encouraging
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stage 4 can be treated the same way lower stages can. It depends on the oncologist treatments plan. I have had Surgery on my hip and my breast. I have also had radiation. I take a hormone therapy pill. My doctors Plainfield not include Chemo as he said the hormone Therapy should take care of it. I also get a Xgena shot once a month because my cancer had spread to the bone. I started at stage 4 as the metastasis was found first.
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