Patient Experiences

I recently had a breast biopsy where the tissue pathology came back "tissue did not survive processing". I never realized that this can and does happen due to many factors such as sample size, chemical process and things sometimes outside of human error. I recently had a breast biopsy where the tissue pathology came back "tissue did not survive processing". I never realized that this can and does happen due to many factors such as sample size, chemical process and things sometimes outside of human error.

Hi, I had two tumors one each in upper and lower right lobes. First, they did the tattoos and then the cast. The tattoo shows where the radiation is to be targeted. The cast is for your use only while receiving SRS so you don't move. You lay on the material and they wet it down, then shape it to your body. It dries quickly. Then you lay in it every time. I had 4 treatments for each tumor lasting 20 mins. each. They gave me a break in between. I did end up with esophagitis, very bad sore throat and hard to swallow. I used the magic mouthwash and it was gone within 10 days. I also used Prilosec for heartburn. I wasn't tired and never felt sick. My problem now is radiation scarring to the pectoral muscle and under the armpit. Though targeted, you have to remember that it has to go in and come back out somewhere. This was due to the location of the one tumor, so basically unavoidable. I have pain when I overdo it, but I'm doing very well overall. I started chemo within two weeks and I'm presently NED. Hi, I had two tumors one each in upper and lower right lobes. First, they did the tattoos and then the cast. The tattoo shows where the radiation is to be targeted. The cast is for your use only while receiving SRS so you don't move. You lay on the material and they wet it down, then shape it to your body. It dries quickly. Then you lay in it every time. I had 4 treatments for each tumor lasting 20 mins. each. They gave me a break in between. I did end up with esophagitis, very bad sore throat and hard to swallow. I used the magic mouthwash and it was gone within 10 days. I also used Prilosec for heartburn. I wasn't tired and never felt sick. My problem now is radiation scarring to the pectoral muscle and under the armpit. Though targeted, you have to remember that it has to go in and come back out somewhere. This was due to the location of the one tumor, so basically unavoidable. I have pain when I overdo it, but I'm doing very well overall. I started chemo within two weeks and I'm presently NED.

Yes, everyone I've spoken with has a similar experience with chemo. I found that I could not concentrate and therefore reading was useless. Too bad, I love to read and learn - its exciting to learn by reading. Eating was not so hot either, my tasting ability was gone along with my appetite. So I ended up watching the clock tick, went for long slow walks. I improved physically as my body acclimated to the chemo. Then, I became much more active - reading, watching tv, walking, talking on the phone, checking out the internet, writing letters, and more. Getting by is definitely what you do. I did not try to attend everything with my girls. We would talk about what do you want Mom to be at and what can you go to with a friend. I took a lot of naps. We planned the meals for the week and ate really simple to prepare meals. Raw carrots and apples were a staple. Buy the cut up fruit or have a neighbor come wash and cut up your fruits and veggies for you. My husband did a lot of the cooking. To build strength, try to do a little bit more. At first I could not even walk around the block. So I would just go to the end of the driveway. I was in physical therapy for my arm and shoulder. The chemo messes with all your muscles. Try to move all your different muscle groups, even if you are lying down. Point and flex your toes 10 times, Raise and lower your arms 10 times, flex and relax your gluts, then your stomach. If you are watching TV, do a few reps of something during the ads. Drink a lot of water!

Give yourself lots of extra time. It took tons of energy to shower and get dressed. So I would get ready and then rest on the couch near the kitchen for 20 minutes. I could answer questions from everyone but not be tempted to do stuff for them. I did the same thing after school. I would be on the couch in the room that my girls play in. They would bring me a drink and I could help with homework or sign papers or talk. But I did not get up if I could avoid it. If someone else can do what you need done, then ask someone to do it. Only do what is important to you and will help you get better.

I would start a task and not be able to finish it. This gets really frustrating. And my husband would get frustrated at the mess I made that he had to clean up or finish. I had to acknowledge how weak I was and learn to ask for help and let go of things that do not really matter. Your priorities will change and your standards of what is acceptable. Decide what is important to you and let the rest go. You will get stronger but it is a very gradual process.

The symptoms I experienced appeared gradually over the course of several months in the following order: firmness akin to inflammation, red splotchiness in a different location, red orange-peel-like skin in a second location, raised red rash in a third location, and nipple inversion. I never experience heat, itchiness, or pain, although these are common symptoms. Also, I was lactating as my symptoms were developing, greatly confounding and delaying my diagnosis. If you have these symptoms and they are NOT relieved by a course of antibiotics, demand a biopsy. My inflammatory breast cancer was only discovered after I found a surgeon who was concerned enough to do a biopsy. The symptoms I experienced appeared gradually over the course of several months in the following order: firmness akin to inflammation, red splotchiness in a different location, red orange-peel-like skin in a second location, raised red rash in a third location, and nipple inversion. I never experience heat, itchiness, or pain, although these are common symptoms. Also, I was lactating as my symptoms were developing, greatly confounding and delaying my diagnosis. If you have these symptoms and they are NOT relieved by a course of antibiotics, demand a biopsy. My inflammatory breast cancer was only discovered after I found a surgeon who was concerned enough to do a biopsy.

The way I made it through chemo was just by dragging myself in, and doing it. No special strategies or skills. But I will say that what I learned to be helpful along the way was the other patients. We shared snacks, boob jokes, a little about ourselves. I called them my chemo clic.

Of course part of getting through chemo is dealing with side effects. I had very few. But let me tell you about the couple I had and what I did:

I had a few mouth sores and my oncologist prescribed a mouth wash that worked beautifully. I’m sorry I don’t remember the brand name, but know that your onc can prescribe something more effective than the over-the-counters if you have this problem.

I became severely neutropenic (very low white blood cells). I had to stop chemo for a few rounds and then push and push my doctor to give me booster shots to raise my white cells. (I was in a clinical trial that would not allow the boosters). So the point I want to make here is that in my case, I wanted to get around the road block that was preventing me from resuming treatment, and the way I dealt with it was to be my own advocate.

I was dawg tired! Who isn’t when they go through treatments? The neutropenia definitely heightened the fatigue. I was not good at taking naps, but I would suggest that you do this. Sleep or at least rest in bed or out in the sun on a nice day. Let your house work go some. If you have anyone around to help with the jobs you’re used to taking on, have them help you. I graciously accepted the few meals friends made and I made enough food to have leftovers to save me cooking the next night.

What else helped was having someone to talk to who would just listen, not tell me what to do, not make judgment calls. I found very few friends who were this supportive. But I’d suggest gravitating toward the ones who are, and maybe getting in a support group of other survivors or patients on similar paths. The way I made it through chemo was just by dragging myself in, and doing it. No special strategies or skills. But I will say that what I learned to be helpful along the way was the other patients. We shared snacks, boob jokes, a little about ourselves. I called them my chemo clic.

Of course part of getting through chemo is dealing with side effects. I had very few. But let me tell you about the couple I had and what I did:

I had a few mouth sores and my oncologist prescribed a mouth wash that worked beautifully. I’m sorry I don’t remember the brand name, but know that your onc can prescribe something more effective than the over-the-counters if you have this problem.

I became severely neutropenic (very low white blood cells). I had to stop chemo for a few rounds and then push and push my doctor to give me booster shots to raise my white cells. (I was in a clinical trial that would not allow the boosters). So the point I want to make here is that in my case, I wanted to get around the road block that was preventing me from resuming treatment, and the way I dealt with it was to be my own advocate.

I was dawg tired! Who isn’t when they go through treatments? The neutropenia definitely heightened the fatigue. I was not good at taking naps, but I would suggest that you do this. Sleep or at least rest in bed or out in the sun on a nice day. Let your house work go some. If you have anyone around to help with the jobs you’re used to taking on, have them help you. I graciously accepted the few meals friends made and I made enough food to have leftovers to save me cooking the next night.

What else helped was having someone to talk to who would just listen, not tell me what to do, not make judgment calls. I found very few friends who were this supportive. But I’d suggest gravitating toward the ones who are, and maybe getting in a support group of other survivors or patients on similar paths.

I felt a lump about a month after I had a routine mammogram that I was told showed nothing suspicious. I ignored the lump for a month, as I’d always had lumpy breasts – I’d actually just said to a friend, “What am I supposed to do? Stop in on my ob/gyn for a quick feel every few weeks?”

It was still there a month later and felt different from past ones (harder. I went for another mammogram. It missed the tumor too (three days before the biopsy that confirmed the 3-cm malignancy). The mammogram did pick up calcifications, so the radiologist ordered a sonogram. He told me on the spot it looked like cancer and to have a biopsy ASAP.

I’d like to close with a few points to consider (which you may already know):

- Digital mammograms miss tumors 40 percent to 60 percent of the time in dense breasts (which most fairly young women have; I was 50 and was told I have dense breasts).
- If you feel something, please pay attention to where it is, and if it doesn’t go away in a few weeks, see your doctor (doesn’t hurt to go in sooner than that). Especially pay attention to if it feels different than previous lumps that were not a problem. Malignancies may be harder; nonmalignancies may move. But not always so. Mine was movable and cancer. I had friend whose very hard lump was an abcess – not “c”. So I think it’s best to get it checked and rule out any guessing.
- If you have dense or fibrous breasts, ask for a mammogram AND ultrasound. Or an MRI. If your insurance company refuses reimbursement, ask your doctor if he/she will give you an order with documentation of why you need this level of screening.

Thanks for taking the time to read this. J

Rachel I felt a lump about a month after I had a routine mammogram that I was told showed nothing suspicious. I ignored the lump for a month, as I’d always had lumpy breasts – I’d actually just said to a friend, “What am I supposed to do? Stop in on my ob/gyn for a quick feel every few weeks?”

It was still there a month later and felt different from past ones (harder. I went for another mammogram. It missed the tumor too (three days before the biopsy that confirmed the 3-cm malignancy). The mammogram did pick up calcifications, so the radiologist ordered a sonogram. He told me on the spot it looked like cancer and to have a biopsy ASAP.

I’d like to close with a few points to consider (which you may already know):

- Digital mammograms miss tumors 40 percent to 60 percent of the time in dense breasts (which most fairly young women have; I was 50 and was told I have dense breasts).
- If you feel something, please pay attention to where it is, and if it doesn’t go away in a few weeks, see your doctor (doesn’t hurt to go in sooner than that). Especially pay attention to if it feels different than previous lumps that were not a problem. Malignancies may be harder; nonmalignancies may move. But not always so. Mine was movable and cancer. I had friend whose very hard lump was an abcess – not “c”. So I think it’s best to get it checked and rule out any guessing.
- If you have dense or fibrous breasts, ask for a mammogram AND ultrasound. Or an MRI. If your insurance company refuses reimbursement, ask your doctor if he/she will give you an order with documentation of why you need this level of screening.

Thanks for taking the time to read this. J

Rachel

That is a very good question, and I've been asked that numerous times. In fact, no, he has not.

What is interesting about this, is that I take after my dad's side-which has had cardio-vascular problems, and no cancer. My brother mostly takes after my mom's side, which had all the cancer-most however were throat-lung related (they all smoked).

I'm not sure if we will ever know why one has a problem and not the other, except that all babies are unique unto themselves, even identical twins, have completely different genetic make-up and DNA. I would like to read up on any studies that have been done. If you hear of any, please write me back! That is a very good question, and I've been asked that numerous times. In fact, no, he has not.

What is interesting about this, is that I take after my dad's side-which has had cardio-vascular problems, and no cancer. My brother mostly takes after my mom's side, which had all the cancer-most however were throat-lung related (they all smoked).

I'm not sure if we will ever know why one has a problem and not the other, except that all babies are unique unto themselves, even identical twins, have completely different genetic make-up and DNA. I would like to read up on any studies that have been done. If you hear of any, please write me back!

My sysmptoms were that of Ovarian Cancer. Upon surgery a tumor was found in the uterus. Having had a lifetime of issues with my uterus and fertility issues, things not feeling quite right or workong right were 'normal' for me. 20 years prior to my cancer diagnosis I was diagnosed with Intra Uterine Synechea (Ashermans Syndrome. This is where the lining of my uterus was covered in adhesions (scar tissue) and would not shed. This is usually caused by trauma to the uterus such as multiple miscarrages or abortions, none of which I had ever had. I had several D&C's and Operative Hysteroscopies to cut away at the adhesions over the course of several years. My gyn/oncologist could not say if the medical history or three years of fertility treatments did or didn't play a role in my cancers. My sysmptoms were that of Ovarian Cancer. Upon surgery a tumor was found in the uterus. Having had a lifetime of issues with my uterus and fertility issues, things not feeling quite right or workong right were 'normal' for me. 20 years prior to my cancer diagnosis I was diagnosed with Intra Uterine Synechea (Ashermans Syndrome. This is where the lining of my uterus was covered in adhesions (scar tissue) and would not shed. This is usually caused by trauma to the uterus such as multiple miscarrages or abortions, none of which I had ever had. I had several D&C's and Operative Hysteroscopies to cut away at the adhesions over the course of several years. My gyn/oncologist could not say if the medical history or three years of fertility treatments did or didn't play a role in my cancers.

I first noticed the tuck after losing about 45-50 pounds through diet and exercise. It was maybe about 3/4" long and looked a bit like tiny elves had stitched a "seam" along the inside of my breast just under my left nipple. The tuck didn't hurt and didn't really bother me all that much until I noticed that whenever I raised my left arm, my breast would "crumple" in a bit. That seemed more disturbing to me.

Since I'm a journalist, I first decided to check around online to see if I could find anything that described what I was seeing. I went to a few sites like the American Cancer Society and WebMD and Komen to read about the warning signs of breast cancer and while most of them mentioned dimples, none of them mentioned tucks or dents or tethering, which is what seemed to be going on. All the sites did encourage women to go to their doctor if they noticed *any* change in their breast, however, so after about two weeks of mulling (and hiding my head in the sand), I decided I'd better get it checked out.

When my ob/gyn examined me, she said she could feel something in there but said it didn't feel cancerous. She thought it was most likely a cyst. Since I was due for my annual mammogram, though, she said she wanted me to get a diagnostic mamm and ultrasound. I have dense breast tissue so it was the ultrasound (not the mammogram) that found the three masses in my breasts, two on the left side (one corresponding to the tuck and one above the nipple) and another on my right breast. During my needle biopsy the following week, another mass was discovered within my right breast. I figured if nothing else, at least I was symmetrical.
I first noticed the tuck after losing about 45-50 pounds through diet and exercise. It was maybe about 3/4" long and looked a bit like tiny elves had stitched a "seam" along the inside of my breast just under my left nipple. The tuck didn't hurt and didn't really bother me all that much until I noticed that whenever I raised my left arm, my breast would "crumple" in a bit. That seemed more disturbing to me.

Since I'm a journalist, I first decided to check around online to see if I could find anything that described what I was seeing. I went to a few sites like the American Cancer Society and WebMD and Komen to read about the warning signs of breast cancer and while most of them mentioned dimples, none of them mentioned tucks or dents or tethering, which is what seemed to be going on. All the sites did encourage women to go to their doctor if they noticed *any* change in their breast, however, so after about two weeks of mulling (and hiding my head in the sand), I decided I'd better get it checked out.

When my ob/gyn examined me, she said she could feel something in there but said it didn't feel cancerous. She thought it was most likely a cyst. Since I was due for my annual mammogram, though, she said she wanted me to get a diagnostic mamm and ultrasound. I have dense breast tissue so it was the ultrasound (not the mammogram) that found the three masses in my breasts, two on the left side (one corresponding to the tuck and one above the nipple) and another on my right breast. During my needle biopsy the following week, another mass was discovered within my right breast. I figured if nothing else, at least I was symmetrical.

This is the easiest question of all for me.
I was my mom's caretaker for 2 years. I literally went through her cancer diagnosis & treatment with her as well as taking her last breath with her.
When my next family member was diagnosed & we found out that we carried the BRCA gene mutation, in my mind it wasn't an if for me, it was a when.
I knew that I had to do everything that I could to not go down this road.(No woman in my family has lived past the age of 60.)
I knew that for me giving up my breasts & ovaries was my only choice with the odds stacked so high against me. In MY opinion taking prophylactic measures was far easier than the choices I would have to make if I developed one cancer cell. This is the easiest question of all for me.
I was my mom's caretaker for 2 years. I literally went through her cancer diagnosis & treatment with her as well as taking her last breath with her.
When my next family member was diagnosed & we found out that we carried the BRCA gene mutation, in my mind it wasn't an if for me, it was a when.
I knew that I had to do everything that I could to not go down this road.(No woman in my family has lived past the age of 60.)
I knew that for me giving up my breasts & ovaries was my only choice with the odds stacked so high against me. In MY opinion taking prophylactic measures was far easier than the choices I would have to make if I developed one cancer cell.

I just had a complete physical a month before with no lumps whatsoever, when I felt the lump. I was scheduled for a business trip in the following week and decided to check in when I would be back. Took me 2 weeks to have a dr appt. By then, my lump was the size of a golf ball and my breast was very tender. A week later, I had a mammo, a breast scan, immediately followed by a needle biopsy that confirmed I had breast cancer. It was 4 tumors glued together that formed the lump. I also found out at the same time my lymph nodes were already infected.

Scared doesn't even begin to describe how I felt. Since I was so small breasted that I barely filled A cups, I somehow always believed I was less likely to get such disease... after all I had less breast to attack, right? WRONG!!!

I wasn't a big fan of self exam and usually did it once every few months. Lucky for me I just had physical that confirmed there wasn't anything, otherwise I would have felt even more guilty that I hadn't caught it earlier. That way, I know there wasn't anything I could have done differently. But it hammered home that at any other time of the year, my lack of self exam might have meant a metastatic cancer (Stage 4) instead of the stage 3 cancer I had with the speed it was developing. At the time I was breast feeding my 8 month old daughter and I had just started to wean her from breast milk. I believe since I wasn't producing as much breast milk I was able to feel the tumor in my breast. It wasn't during a self exam, it was just simply handling my breast for nursing. The tumor was very close to the skin and could not be missed. Thankfully, I didn't chalk up the lump to "lumpy breasts" which is very common during nursing. I called my OB immediately and was examined two days later where it was confirmed with a mammo, ultrasound, and needle biopsy that it was indeed cancer.

I guess there are three or more components of preparing for a new round of chemotherapy treatments.
The first would be psychological, getting your head around the fact you need to have more treatment, either because of recurrence or progression - unless you deal with the psychological aspects then dealing with anything else gets harder. For me in a way the psychological aspect gets easier as time goes on. I am now on my 5th chemo in less than 3 and a half years and there is some level of acceptance now that this is part of my life. You also need to check your family's and friends' reaction to the news as well sometimes they have a harder time than you do accepting that you need more treatment. I go to counselling offered by the Cancer Society and I find that good for just checking 'my head's in the right place' before starting chemo.
Secondly, I try to be as healthy as possible, apart from the cancer. As my fitness had suffered from luck of exercise while on Xeloda, this time I enrolled in a 'Cancer Wellfit' course offered free by one of the gym franchises that gives you a light exercise regime tailored to your abilitiies and I have been surprised how quickly my fitness levels have picked up. If such a programme is not available, any amount of light physical exercise, walking, aqua-aerobics and such like is beneficial if you can do it.
Thirdly, would be organisational - I try to get big jobs done and out of the way before chemo treatment starts as to ease the load when I am not feeling well. I try to find out what likely sideeffects will be and schedule activities for what are likely to be my 'good days'. I am lucky that my children are grown up and my husband is a good cook so that I do not have to worry about organisisng meals and other household things in advance. I think if you have smaller children accept all the help you can get with meals, childminding and the like. I guess there are three or more components of preparing for a new round of chemotherapy treatments.
The first would be psychological, getting your head around the fact you need to have more treatment, either because of recurrence or progression - unless you deal with the psychological aspects then dealing with anything else gets harder. For me in a way the psychological aspect gets easier as time goes on. I am now on my 5th chemo in less than 3 and a half years and there is some level of acceptance now that this is part of my life. You also need to check your family's and friends' reaction to the news as well sometimes they have a harder time than you do accepting that you need more treatment. I go to counselling offered by the Cancer Society and I find that good for just checking 'my head's in the right place' before starting chemo.
Secondly, I try to be as healthy as possible, apart from the cancer. As my fitness had suffered from luck of exercise while on Xeloda, this time I enrolled in a 'Cancer Wellfit' course offered free by one of the gym franchises that gives you a light exercise regime tailored to your abilitiies and I have been surprised how quickly my fitness levels have picked up. If such a programme is not available, any amount of light physical exercise, walking, aqua-aerobics and such like is beneficial if you can do it.
Thirdly, would be organisational - I try to get big jobs done and out of the way before chemo treatment starts as to ease the load when I am not feeling well. I try to find out what likely sideeffects will be and schedule activities for what are likely to be my 'good days'. I am lucky that my children are grown up and my husband is a good cook so that I do not have to worry about organisisng meals and other household things in advance. I think if you have smaller children accept all the help you can get with meals, childminding and the like.

I had never heard of Inflammatory Breast Cancer before being diagnosed with it, but now know I had rather classic symptoms. At the beginning of July 2008 my breast became very itchy, with no sign of an insect bite. I had always had larger breasts and had done self-examination and even been proactive in having a mammagram at 42 years old (free screening starts in New Zealand at 45) but nothing about an itchy breast signalled breast cancer to me. It was relieved somewhat by topical ointments but remained itchy, sometimes aggravantingly so. I thought it was washing powder residue in my bra or some such thing irritating my skin.
About a week and a half later, on the first day of my period my breast started aching - as I was 45 and it was the first day of my period - I put it down to hormonal pain.
3 days later it was still aching. I put my bra on in the morning and my breast still looked normal to me. When I took it off that night - it was big, red and funny-looking. There was swelling and redness over approximately 75% of my right breast. I was a 'G' cup and it had swelled to an 'H' the skin was very puffy looking and the pores were sunken, giving it the classic 'orange peel' look. The aureole around my nipple was puckered and raised and had gone a paler colour and my nipple had inverted, and this had all just happened in the course of a day.
I managed to get to the Drs a day and a half later. My GP - primary care Dr - started me on antibiotics and saw me every couple of days to monitor response. When there had been no response after a week, even though he still thought it was an infection, he decided to send me to see a private breast clinic, that deals with all sorts of breast issues. (side-note New Zealand has a public health system but there are private specialists working in most fields as well)
He told me I needed to see them straight away and I managed to get an appointment that same week (less than 2 weeks after my breast 'blew up')
The very first visit the breast physician suspected IBC, although she didnt tell me. Ultrasounds, mammogram were done. Ultrasound showed a small collection of fluid in one part of my breast. Mammogram just showed my right breast was denser than my left and that the skin layers itself were 4mm thick . They did a final needle aspiration of the collection of fluid, and when that came out clear, then proceeded to take several samples of core needle biopsies. I was told to come back on Monday for the results. Naively, even though they had taken tissue, I didnt seriously think 'cancer' as nothing in my symptoms reflected anything I had ever heard about breast cancer.
On Monday, we were told the news, they warned us to be careful what we read on the internet and that I would have to start chemotherapy as soon as possible and that I would eventually have to have a mastectomy and lose my entire breast. They referred me to an oncologist and we had CT and bone scans done privately within a week to expedite the start of my treatment. The CT and Bone scan showed that I had no distant metastasis at that stage, but that the cacner was in my breast, axillary nodes and supraclavicular nodes (above the collar bone). I started Chemo 3 weeks after diagnosis in the public health system. I had never heard of Inflammatory Breast Cancer before being diagnosed with it, but now know I had rather classic symptoms. At the beginning of July 2008 my breast became very itchy, with no sign of an insect bite. I had always had larger breasts and had done self-examination and even been proactive in having a mammagram at 42 years old (free screening starts in New Zealand at 45) but nothing about an itchy breast signalled breast cancer to me. It was relieved somewhat by topical ointments but remained itchy, sometimes aggravantingly so. I thought it was washing powder residue in my bra or some such thing irritating my skin.
About a week and a half later, on the first day of my period my breast started aching - as I was 45 and it was the first day of my period - I put it down to hormonal pain.
3 days later it was still aching. I put my bra on in the morning and my breast still looked normal to me. When I took it off that night - it was big, red and funny-looking. There was swelling and redness over approximately 75% of my right breast. I was a 'G' cup and it had swelled to an 'H' the skin was very puffy looking and the pores were sunken, giving it the classic 'orange peel' look. The aureole around my nipple was puckered and raised and had gone a paler colour and my nipple had inverted, and this had all just happened in the course of a day.
I managed to get to the Drs a day and a half later. My GP - primary care Dr - started me on antibiotics and saw me every couple of days to monitor response. When there had been no response after a week, even though he still thought it was an infection, he decided to send me to see a private breast clinic, that deals with all sorts of breast issues. (side-note New Zealand has a public health system but there are private specialists working in most fields as well)
He told me I needed to see them straight away and I managed to get an appointment that same week (less than 2 weeks after my breast 'blew up')
The very first visit the breast physician suspected IBC, although she didnt tell me. Ultrasounds, mammogram were done. Ultrasound showed a small collection of fluid in one part of my breast. Mammogram just showed my right breast was denser than my left and that the skin layers itself were 4mm thick . They did a final needle aspiration of the collection of fluid, and when that came out clear, then proceeded to take several samples of core needle biopsies. I was told to come back on Monday for the results. Naively, even though they had taken tissue, I didnt seriously think 'cancer' as nothing in my symptoms reflected anything I had ever heard about breast cancer.
On Monday, we were told the news, they warned us to be careful what we read on the internet and that I would have to start chemotherapy as soon as possible and that I would eventually have to have a mastectomy and lose my entire breast. They referred me to an oncologist and we had CT and bone scans done privately within a week to expedite the start of my treatment. The CT and Bone scan showed that I had no distant metastasis at that stage, but that the cacner was in my breast, axillary nodes and supraclavicular nodes (above the collar bone). I started Chemo 3 weeks after diagnosis in the public health system.

I wish that I would have known other people like this community to help me through the several shocks I had at dx, during tx and how to deal with the aftermath. I wish I had an idea how it would affect the lives of my children and know howto better prepare them. It is so sad to see my daugther, now 5 remembering my hospital stays and make me promise each time I go to the doctor that I wouldn't stay there and come back to sleep at home. I wish I had known that radiation of the breast will affect what kind of reconstruction I can have on that side. I might have opted for a mastectomy so that I could get a saline implant on that side rather than having to have a TRAM-flap reconstruction.

No matter the way you write about it, be it by blogging, face booking, tweeting, or simply confining your thoughts into an electronic or paper journal, it's a good way starting point toward recovery. For me, it was a way to reach out to others, to talk with survivors and patients going through the same thing I was, and feel like I wasn't alone.

At first, I did it anonymously, it was easier for me that way. I was a little shy, even through the computer. Just like afreshchapter said, after I received a few comments, I got bolder and my posts and tweets started getting more precise, talking about issues that were important to me. Then, I decided I was ready to tell my own story, be open about my own experience and share my own "wisdom" about breast cancer.

The idea that my questions, my stories, even the time where I was ranting about my own misery, could help another fell less alone, know they are not the only one having good and bad days, give them an idea or two about how to go on living, fighting after this, it was worth it.

Go at it one thought, one idea, one comment at the time, but don't write about it. We all want to know, want to read and want to learn about others. It was makes us stronger. When I first started blogging, I told myself I didn't have to hit "publish" because it scared me to be vulnerable with my emotions. But, what I found is that after I pressed publish the first time and received a couple of comments, I would think about the 1 person who might feel less alone if I posted about my own experience. Even now, I try not to think about all of the strangers who have a window into my life and try to write each post for just 1 friend. Having an outlet to share my feelings has helped me through the roller coaster of post treatment life.

I was on the NASBP Protocol B-40. I was ramdomly put into the Groupe 3B where I first received Docetaxel combined with Gemcetabine for a period of 12 weeks witht he addition of Avastin. Then for another 12 weeks, I received AC with more Avastin. It was followed by a double mastectomy, including reconstruction with implants. Once done, I received 24 radio tx and 10 more injection of Avastin. What was so amazing, I had 4 tumors in my left breast who made a lump of about 2,5 inch diameter and several my lymph nodes were infected. Two tx into the b40 protocol, and my lump had diminished to the point where I didn't have any discernible lump during a manual eval. At mastectomy time, there was only an less than half-inch of cancer left in the breast.

It was incredible to see how fast I responded to chemo and how the combination with Avastin allowed to pratically melt my tumors away in so few tx. I was on the NASBP Protocol B-40. I was ramdomly put into the Groupe 3B where I first received Docetaxel combined with Gemcetabine for a period of 12 weeks witht he addition of Avastin. Then for another 12 weeks, I received AC with more Avastin. It was followed by a double mastectomy, including reconstruction with implants. Once done, I received 24 radio tx and 10 more injection of Avastin. What was so amazing, I had 4 tumors in my left breast who made a lump of about 2,5 inch diameter and several my lymph nodes were infected. Two tx into the b40 protocol, and my lump had diminished to the point where I didn't have any discernible lump during a manual eval. At mastectomy time, there was only an less than half-inch of cancer left in the breast.

It was incredible to see how fast I responded to chemo and how the combination with Avastin allowed to pratically melt my tumors away in so few tx.

hi, my first diagnosis was stage 3 c, my first recurrence was to internal mammary nodes so still stage 3 c, second recurrence was metastatic to liver (stage 4) - because of the nature of Inflammatory Breast cancer we knew recurrence was likely so although we were upset and disappointed we also didnt get a complete shock with it either. After first recurrence they were scanning regualarly every 4-6 months because they were expecting it to come back again and because we knew that too it made it easier in a way when it did happen. We tend to have a 'it is what it is' attitude and try just to make the best of the time I have left - they are going for control not cure. doesnt mean I dont get down sometimes but I'm not going to waste too much time feeling sorry for myself. I actually think its harder for early stage people that have recurrences psychologically because there is a more definitive expectation of complete cure I have had 3 primary breast cancers, so have faced this issue twice. In retrospect, the two most difficult parts of facing my recurrence was 1. the fear of the unknown before I ever had a recurrence and 2. the "PTSD" that got triggered. I had many panic attacks and all that emotional turmoil was unbearable. That was for the 2nd occurrence. Basically, my worst-ever- nightmare had just come true, and I'd been so terrified of it happening that it probably made things harder to deal with. Going through the 2nd occurrence made me see that I could face my worst nightmare and come out ok on the other side.... The hardest thing about the 3rd time was that I'd just started getting my life sort of on track after #2 and felt completely hijacked. I've had to start over from scratch 3 times, and it is not easy. All that disruption, especially when you're young and single and trying to get your career on... not fun. I was dx'd with Stage 1 each time and I imagine women with mets might have a different point of view.

Cancer changes everything. It just does. Everything and everyone in my life has been at least somewhat influenced by my cancer diagnosis. That's my answer in a nutshell. Well, at the cost of sounding too cliché, I think I have realized that life is so precious and that we are only on the earth for a finite number of years. I try to keep in mind that if today was the day I was supposed to die, that I made yesterday worth living. In other words, I am trying to enjoy the day to day small victories and the simple pleasantries in life. I am also trying not to pass up any opportunity that will make me a better person. I am still planning for the future however I think I’ve started living for the present which is something that I didn’t necessarily do prior my diagnosis. I was so worried about the next week, next month, and next year instead of focusing on right now. Cancer has taught me that there may not be a next week so make this week worth living.

I like to laugh and even more I like to make other people laugh. I was voted ‘funniest female’ in our graduating year of high school and I take pride in that (in fact, I think I had it on my resume for a while [I'm not even joking]). Any time I have faced something hard in life, I usually turn to humour. I have three different instances that still make me laugh when I retell the story.

1. I shaved my head 9 days after my first chemo. I wanted to have some control over losing my hair so after donating as much as I could (about 12 inches) and sporting a short style for a few weeks, I decided to shave it to avoid it coming out in clumps. I wasn’t sure how I was going to react but I loved it. I mean, yes, I wish I had hair but I’ve always wondered what it would be like to have a shaved head and now I know. Once I stood up to look in the mirror, my boyfriend couldn’t get me back in the chair to do final touches because I was too busy walking around the kitchen letting the air graze through my scalp. I wasn't emotional about losing my hair and instead we just kept laughing because the air felt so good skimming my scalp and my boyfriend could not get me back in the chair to finish up.

2. After chemo #5, I ended up in Emerg. because of a fever that wouldn’t stop climbing. I put the gown on so that it would open at the front. The nurse came in and said ”You have that on backwards”, I said “You don’t want to see my boobs?” in an almost disappointed way. She said “You’re here for a fever, we don’t need to see your breasts”. I took it off and put the opening at the back. I was so used to doctors wanting to see my breasts, I just assumed, fever or not, that this doctor would want to see them too.

3. My sister-in-law’s mother (my niece and nephew’s grandma) had been diagnosed within a year before me and had chemo and radiation, so these kids were not new to the whole breast cancer thing. At my niece’s 4th birthday dinner, we were all sitting around the table and she randomly said, “Uncle Keith’s [my bf] a boy.” and I said, “No, Uncle Keith’s a girl.” She said, “Well, he’s got a boy hair cut.” She had me there. In trying to prepare them for me losing my hair, I said “Auntie Katie is going to cut her hair like Uncle Keith really soon.” My 6 year old nephew pipes up, without missing a beat and says “No, it’s going to fall out.” All 6 of us adults just burst into laughter. To him, it wasn't a big deal, Auntie Katie is still Auntie Katie, with or without hair, he just said it so matter-a-factly. I like to laugh and even more I like to make other people laugh. I was voted ‘funniest female’ in our graduating year of high school and I take pride in that (in fact, I think I had it on my resume for a while [I'm not even joking]). Any time I have faced something hard in life, I usually turn to humour. I have three different instances that still make me laugh when I retell the story.

1. I shaved my head 9 days after my first chemo. I wanted to have some control over losing my hair so after donating as much as I could (about 12 inches) and sporting a short style for a few weeks, I decided to shave it to avoid it coming out in clumps. I wasn’t sure how I was going to react but I loved it. I mean, yes, I wish I had hair but I’ve always wondered what it would be like to have a shaved head and now I know. Once I stood up to look in the mirror, my boyfriend couldn’t get me back in the chair to do final touches because I was too busy walking around the kitchen letting the air graze through my scalp. I wasn't emotional about losing my hair and instead we just kept laughing because the air felt so good skimming my scalp and my boyfriend could not get me back in the chair to finish up.

2. After chemo #5, I ended up in Emerg. because of a fever that wouldn’t stop climbing. I put the gown on so that it would open at the front. The nurse came in and said ”You have that on backwards”, I said “You don’t want to see my boobs?” in an almost disappointed way. She said “You’re here for a fever, we don’t need to see your breasts”. I took it off and put the opening at the back. I was so used to doctors wanting to see my breasts, I just assumed, fever or not, that this doctor would want to see them too.

3. My sister-in-law’s mother (my niece and nephew’s grandma) had been diagnosed within a year before me and had chemo and radiation, so these kids were not new to the whole breast cancer thing. At my niece’s 4th birthday dinner, we were all sitting around the table and she randomly said, “Uncle Keith’s [my bf] a boy.” and I said, “No, Uncle Keith’s a girl.” She said, “Well, he’s got a boy hair cut.” She had me there. In trying to prepare them for me losing my hair, I said “Auntie Katie is going to cut her hair like Uncle Keith really soon.” My 6 year old nephew pipes up, without missing a beat and says “No, it’s going to fall out.” All 6 of us adults just burst into laughter. To him, it wasn't a big deal, Auntie Katie is still Auntie Katie, with or without hair, he just said it so matter-a-factly.