Saturday, July 31, 2010

Who inspires me...


Thank you for sharing this story about your dear friend Dorothy. We all need people in our lives that inspire us. Also, thank you Dorothy for sharing your life story with us.


In the beginning............... In 1953, at the age of twelve, I was diagnosed with a severe endemetriosis and prescribed a medicine that the family doctor felt confident would correct the problems I was experiencing. Later, determined to be massive daily doses of estrogen administered orally. I remained on this medicine until I was 29 years of age. In 1966, when I was 25, I came to live in America from England. In 1970, two weeks after my 29th birthday, and in the midst of a very abusive marriage, I discovered a lump in my right breast very close to my armpit. It did not hurt at all. I decided I would ignore it, assuming it would go away, and I continued to enjoy my stage work as a dancer. I believed that if it did not hurt, it was not serious. After about two months, I was encouraged to consult with a doctor who almost immediately referred me to a surgeon. After a thorough examination, I was advised that without immediate surgical intervention, my life expectancy was 3-6 months at the most. This particularly aggressive cancerous growth had presented very close to my right lymph gland. So at 29 years, I received the surgery to hopefully save my life. I was offered two options for surgery, one less invasive, which would require chemotherapy and radiation. The other option was more invasive surgery without chemotherapy and radiation. I selected the second option, as I wanted to keep my ankle length hair, which was a very important feature for my stage work. I had recently been offered an opportunity to perform in a nightclub every Saturday night. Surgery was performed, and it was found that the cancer had spread. The removal of 24 lymph nodes was necessary (20 of which were found to be positive) together with the right lymph gland and pectoral muscle. I had eight hours of surgery, 78 stitches and three weeks in the hospital. My surgeon felt confident that they had “got it all” but that a ten year waiting period would now be in effect for any re-occurrence. Whilst recovering, I became curious and needed to look at my body. Indeed it was not a pretty sight and one I will never forget. However, the doctors were confident that the surgery was successful and that my young life had been spared. I was told whilst in the hospital that I (at the time) was one of the youngest women on record to have this dreadful disease. During the course of my recovery, I was introduced to the “reach to recovery” programme and a wonderful lady whom I shall call Claire. Claire represented the American Cancer Society, and it was her job to visit people like myself and guide them into the use of the breast prosthesis. Which she did so very well. A very important part of the psychological healing and adjustment required to “face the world” so to speak. She assisted me in finding the correct style for me, and then proceeded to teach me how to re-use my arm. Because of the guidance and support given to me by the American Cancer Society (Claire), I gradually gained confidence in the knowledge that an artificial breast can look and feel perfectly natural. I could once again face my world on stage and off. Learning to re-use my arm was a serious challenge because the surgery was so extensive. However, I was determined to do so, I redesigned my dance wear and some time later (three months), I resumed my stage work once again. It was not revealed to me, but to my husband, that because of the type of cancer I had (aggressive and feeding off of my ovaries) I must have a total hysterectomy as soon as I was strong enough, in addition, under no circumstances was I to become pregnant. Although 24 lymph nodes were removed, and the last four were negative, if there was one dormant cancer cell remaining, it could and would revive, multiply through my ovaries and the cancer would reappear. In consequence, an unborn child and I would perish. Sadly, some time later a pregnancy occurred as previously stated, not having been made aware of the facts, I consulted a gynaecologist as I was not feeling well. My remaining left breast was extremely enlarged and very painful. The gynaecologist/surgeon discovered the 11th week pregnancy and requested a thorough physical. Upon examining my upper body, he was profoundly disturbed by the recent radical/radical mastectomy. He immediately ordered copies of, any and all, reports. I was subsequently told that an immediate therapeutic abortion was necessary to be performed, followed six weeks later by a total hysterectomy. My life was once again in jeopardy. It was explained to me that this procedure would put my body into an immediate surgically induced menopause. I was reminded that without this surgery, I would once again face certain death. I was unable to accept the fact that at 30 years of age, not only would I lose the foetus in my womb, but I would never be able to bear a child of my own. Acceptance was an unbearable thought, and with that in mind, I consulted several other gynaecologists/surgeons who sadly gave me the same response, with the exception of one. This particular specialist had a very different “solution”. Because of his religious beliefs, he explained his alternative to me in the following manner: I would be monitored closely during the course of my pregnancy. In the eight month, I would enter the hospital, wherein, the unborn child would be removed from my body and I would eventually pass away from the effects of the cancer. In the interim, I would be encouraged to seek and select the adoptive parents within the realm of the surgeon’s religious community. I would be permitted to name the child and choose the adoptive parents. It was also explained to me that I would prepare for my funeral as I would not survive a full term pregnancy. That is why the unborn child would be removed from my womb at eight months. After many connecting moments with my conscience, I came to the very sad conclusion that I wanted to live. Carrying the knowledge of the threat attached to my pregnancy, I proceeded with a therapeutic abortion. Seven weeks later a total hysterectomy was performed. My consolation for this life saving procedure (mine) was in the thought that I could eventually adopt a child. I was supported by friends to think in this direction, which did indeed give me encouragement. The challenge of being unable to bear a child began to invade my mind. So I began extensive enquiries about a future adoption. Once again I am challenged with the same response from the various agencies through which I made enquiries. Because of the severity of the cancer, I was too high a risk to allow any adoption. After receiving this news I was in a state of despair and feeling myself fading away. I consequently and eventually consulted a psychologist. During the course of my visits with, her, the doctor guided me very gently and one day said “What would you like to do with the rest of your life?” I answered, work with animals. This ultimately led into buying my first Yorkshire Terrier from England. I did not know it then but this Yorkshire Terrier would be the beginning of the rest of my life.
In the year 2000, I became aware of an unusual feeling of discomfort in my remaining breast. This obvious change in my body compelled me to seek medical attention. The initial examination did not reveal anything, but my sense of urgency remained. I persisted in my pursuit to discover what was ailing me, and eventually, with the help of an enlarged ultrasound (mammogram did not reveal anything) two tumours were discovered in my breast. Both were of the aggressive type, one was attached to my rib and the other floating in the main breast area. Needless to say, another mastectomy was performed and once again my life had hopefully been spared. Six lymph nodes were removed, four of which were positive, and the last two were negative indicating that this time the cancer had been hopefully stemmed early.
I recovered to resume my journey through life. I had entered one of my Yorkshire Terriers in the Kennel Club of Philadelphia dog show, and determined not to be deterred by being breastless, and encouraged by my dear friends and colleagues, in the breed, I did in fact show my girl. Holding her lead was painful and difficult, as I had not regained full use of my arm, but I persevered. I now did not have any breasts at all and was acutely aware of their absence. However as the saying goes, “Stiff Upper Lip” I eventually ordered two full breasted prosthesis, slightly larger than my natural breast size (WHY NOT)!!! I have been cancer free (in remission?) for almost ten years.
It should be well noted that, at no time did I receive any chemotherapy or radiation, treatments. I had planned to do so when I had my ankle length hair cut off in three stages and sent to Locks of Love in Florida. But I changed my mind. My life today at 68+ is full. Breeding, exhibiting, and more recently, provisionally approved to judge my beloved Yorkshire Terriers, AND, for the sheer joy of doing it, I am also an accomplished ballroom dancer presently at silver level, with aspirations for top level which is gold.

Tuesday, July 27, 2010

The latest on Kim

Hello all,

The pathology has come back on my left flank nodules as being "metastatic deposits." This new area of cancer is unchanged from my previous tumors: ER+, PR+, HER2-. So I remain on anti-estrogen therapy. I am now on Faslodex injections.

I received my first dose over three weeks ago, 500mg, in two 250mg intramuscular injections to the back side. I received a 250mg injection two weeks after that. I am to receive another 250mg injection next week, and then I'll get a 250mg injection every four weeks after that. The injections weren't that bad at all! I had really worked myself up into a tissy (sp?) because I absolutely hate IM injections. I'm used to the IVs at this point, and I've even grown used to my monthly Zolodex injections into my belly fat, but IMs usually hurt! I am happy to say that evidently I got a nurse with good technique because it didn't hurt at all. It was odd, though. I must say I've never got an injection quite like it. It took about 30-45 seconds for each syringe to be emptied into me, all the while the nurse was massaging the muscle. It was some thick stuff! Dr. Green had told me it was going to be z-tracked (a technique used on some medications,) but this was definitely not any z-track technique that I'd ever seen or learned about in nursing school. I'm growing weary with always critiquing every aspect of my care ... at this point I was just glad it didn't hurt... at first. Shortly after the injections I could feel the injection sites getting sore. The soreness was pretty intense for a few days, but tolerable.

I developed an unusual chemical-like taste in my mouth and subsequent bad breath (which I've dubbed "faslo-breath") about 30 minutes after the first dose. My urine had a similar peculiar odor to it, and after one of my very few workouts of late, I noticed that even my sweat had the same odor! How lovely!!! These symptoms lasted for about 4-5 days and gradually dissipated. The second dose, which was half the dose of the first loading dose caused the same side effects only slightly less intense than the first dose had.

Of course I have to look up whatever I can, so I did some Googling on Faslodex and its side effects. Wanted to make sure that the side effects I was having wasn't something really bad like it was overwhelming my system. Isn't that so medical-sounding ... not! Nowhere did I find any mention of the side effects that I was experiencing. Just great! I did find lots of reports of injection site soreness, which seemed to be the worst of most women's side effects.

In my searching I had stumbled upon a forum-message-board-type site called, in a "community" called "Advanced Breast Cancer." There were many posts that mentioned Faslodex, and there were also many discussions going on about all aspects of womens' stage IV breast cancer journey: emotional, physical, medical, etc. What I really liked about it was that it was active and current, and so relevant to what I'm going through. As I've said before, there are way too many of us out there! I read a lot and posted/responded some myself, and went way beyond just looking up Faslodex.

However, what I did find out about Faslodex was somewhat disconcerting to me. I read that just last year, a four-year study was completed that showed that giving Faslodex 500mg every month instead of 250mg was more beneficial to the participants. Specifically, it extended life. I read about several women whose doctors had upped their dose after learning of these study results. It was a few women's understanding that the new "standard" Faslodex dose was 500mg per month instead of 250mg regularly prescribed before the study. My doctor had not told me of the study, and my plan of care was to get 250mg a month.

I then specifically looked up the study. I read all of the results, and I discovered that the higher 500mg monthly dose of Faslodex extended life by one month! hmm, I thought. Two IM injections a month vs. one a month and all I get is one additional month to live?! Totally not worth it!

But I quickly came to my senses, and realized that the one month was the "median" in the results. Meaning that some women may have lived much longer than that and some women probably didn't respond at all. I tell myself that I could possibly benefit from the new dosage for many, many months or years! So armed with that information, I called to schedule an appointment with Dr. Green to discuss the new dosage recommendations. She couldn't fit me in for two weeks. :( I must wait and be patient.

Meanwhile ... In my research I also learned that Faslodex can take 3-6 months to work. Okaaaaaay-eeee. That seems like a long time to me. Especially since I am able to feel the "deposits" on my back myself. At any time. Very often. And especially since I can feel them growing. Not sure if I can feel them (more than one) because I know there are more than one now, or if they are actually getting bigger. They feel like they're getting bigger to me, which is worriesome, of course. And I am feeling some other changes, although none are severe. I feel a heaviness in the middle of my chest when I lay on my back. I feel some discomfort in the same area when I inhale deeply, from any position. Sneezing is also uncomfortable.

So needless to say I am really anxious to see Dr. Green and discuss all of these things. The growing deposits, the Faslodex dosage issue, the changing feelings in my chest. I would feel much better if she would send me for scans and bloodwork. If she does decide to, it will be more waiting, as the tests are never ordered for the same day and then it takes a few days to get the results. I am also going to ask her if I she thinks I could benefit from Xeloda while we wait for the Faslodex to kick in. I am willing to take both at the same time! I am simply not comfortable with waiting 3-6 months for the Faslodex to work while I can feel things growing in me! With being able to feel the lumps growing and also having the changing sensations in my chest, it makes me wonder what is really going on inside. Is it the chest lymph nodes? Is it my lung? Will my tumor marker level be rising? Too many questions, too many worries ... must get answers!

Friday, July 16, 2010

Support and encouragement make a difference...

Thank you Trish for sharing your story with us. Congratulations on being CANCER FREE! Celebrating life is what it is all about.

Bless you,

My name is Trish and this week, I am one year cancer free. I was diagnosed with Stage II breast cancer in April, 2009. On May 7, 2009, I underwent a bilateral mastectomy with a TRAM flap reconstructive surgery. Six weeks later I started my journey through eight chemotherapy treatments at Duke University in Durham, NC. With those treatments came the hair loss, weakness, and severe bone pain. My husband, four children, other family members and friends were right by my side through the entire journey, lifting me up and continuously encouraging me. I could not have made it without them. My hair grew back very slowly, but finally, on May 31, 2010, I took off my wig and am now celebrating a life free of cancer.

Continue with follow up...


You have so much courage. Thank goodness you were doing your monthly breast exams and you found your lump. You took control. We are faced with making difficult decisions about our health. Bless you on your journey. You are a survivor!


I was told back in 2002 that I had breast cancer (ductial) and had a lumpectomy done at that time. This was followed by mamo's every 3 months for a year. Then they told me that all was fine and I should have a mamo done once a year. Well this year, February 2010, I found a lump in my left breast and went in for a mamo, this lead to a digital mamo followed by a surgical bio. after all of this they said my cancer was back. I was told I could do nothing and wait it out or I could have a total bilateral mastectomy. And put an end to this cancer business. So on March 24th I had both of my breast removed. My path report stated that in fact I had ductial cancer in both breast not just the left side. I feel very lucky! Now I must make the choice or rather to have reconstructive surgery or not. I'm still healing from my surgery but have to say I'm glad that My fight has been won.


My conversation with Abby...

Currently going through the motions of breast cancer at times can be hard. It has been over 6 months now with many tests from mammograms, x-rays, MRI’s and 3 Biopsies. Still not knowing and not being treated promptly. I see how other women young and old can get very frustrated with the way things are handled.

I just turned 45 July 1st. I have a 7 yr old boy and 5 yr daughter. They are the reason I fight and continue to fight this cancer that is now plaguing my body. Now being told I will have to undergo a mastectomy is even more icing on the cake.

Both times I was told I had breast cancer over the phone at work and what I needed to do. Still I’m in shock and it seems so surreal to me that it is even happening. Which, I know now many have felt the same way and it is heart wrenching to say the least.

All I want to do now and always have is to let others be aware how important it is to go do the check ups. I did just one yr I had skipped due to moving over 3 times it was chaotic. Now just trying to deal with what news I’m to expect next you know.

I’m writing just to say how I appreciated your web site and the on going support and wiliness to continue to help others out there. Not only you your family, friends and co-workers are affected.

My god! I never knew how loved I was until this terrible cancer attacked me.

My next step is a visit with an oncologist and I hope a plan to save my life.

How do I let others know other than web sites how important this is I know you have ribbons and about the ribbons how do others use them. My day care made me a ribbon and they put the name of all the kids on it. It was breath taking.

My son wrote me a special note. Then I lost it.

One day I hope to share my story with other women and help them fight this Breast Cancer. I fought many things this has got to be the most challenging one but I’m a good fighter! I fight for my right to stay alive for all of mankind to see we women can beat this.

Take Care, Keep up the Good Work!


Thanks for taking the time to write! I appreciate your kind words.

It is so important to be an active advocate for your own health! I have a LOT of experience dealing with the medical establishment, and believe me, I know to stay on top of things. If something doesn't sound right or even feel right, you must question and get 2nd 3rd, etc opinions. No one at any hospital or clinic can know everything about you as well as you! I wish you luck and prayers on your journey.

In my opinion the pink ribbon campaign is multi-faceted. In one respect, it's a way for friends and loved ones to show support of someone going through the breast cancer journey. In another, it's a bridge to reach out to others to increase "awareness," so women take better care of themselves so that cancer is detected earlier and hence their chances of survival are increased.


Yes, you are absolutely right! So, many women really need to take control and value the seriousness in this cancer. You certainly do have my permission by all means. We meaning women/men young and old need to know we are not alone on this journey to survival and a helping hand is just a second away.

God Bless you and taking the time to read my story! I’m sure the next will be a positive one for all to see!


Thursday, July 1, 2010

News from Kim

Hello all,

Another update on my stage IV breast cancer journey. Monday I received mixed results from last week's scans. A couple of chest lymph nodes actually decreased in size, while a nodule in my left lung increased slightly. My tumor marker (CA 27-29) remains somewhat stable at 32 (1 up from 31 2-1/2 months ago, yet still within the normal range of 0-38.) Dr. Green deemed the results not conclusive enough to move on to the next level of treatment. Not significant enough growth to discontinue the use of my current med. Once we put a drug behind us, there is no going back to it. And the more drugs we put behind us, the less there are in front. Once you've used up all available treatment options, well ... clearly it's not good.

However, Dr. Green was very concerned about the marble-sized lump I discovered a couple of months ago on my back left rib. We looked at it on the chest CT scan and yep, there it was, between my skin and ribs. Not on the ribs. There was no mention of it in the radiologist's report (x-ray and CT scan) -- quite disconcerting to me, especially since I had mentioned the finding to both the x-ray technician and the CT technician. I had also specifically requested that the CT scan tech place a note on my chart/films so that the radiologist reading the scan would be aware of the new issue and could take a closer look (to which she replied "Oh they look at everything.") I said that regardless, I would appreciate it if she would put a note or mention it to the radiologist, since it was new and I was concerned about it. Evidently, either she didn't do as I requested (bad enough,) OR, the radiologist didn't pay attention to the note. In any event, the radiologist failed to notice the nodule. There was no mention of it in the CT scan report. Thankfully, it was palpable enough and slightly tender so that I found it myself and reported it to Dr. Green.

Dr. Green felt the lump and was definitely concerned. She recommended an ultrasound with a possible fine needle aspiration (fna) biopsy. She said that if the lump was found to be more cancer, then she would definitely change my medication from Aromasin (daily by mouth) to Faslodex (an injection, not sure how often,) and it was scheduled for 3 days ahead, which brings us to today.

Today I went for an ultrasound of the nodules on my left flank area (a much more medical term than left back rib area!) First the ultrasound tech simply scanned the area while I laid on my stomach. The bad news was that she actually found 3 nodules instead of 1! One large one, one medium, and a third that she said was small and "indistinct." She left to show the radiologist the ultrasound results, and returned to inform me that yes, a biopsy was definitely indicated in this case since the nodules appeared to be solid. Okay. Danny wasn't allowed in the ultrasound room with me, but when the tech left to prepare for the biopsy, I texted him and my sister to keep them up on the latest news, and also so I wouldn't just lay there and cry. My last needle biopsy was not pleasant, but this time I wouldn't be watching the screen like last time. I told myself I would never do that again, as it was really traumatic to watch while feeling it too. The radiologist came in and explained what was going to be done. I asked her what other conditions the nodules could be if they weren't cancer. She said that if they were closer to the skin, they could be neuromas, but they weren't close the skin. She said that her list of things it could be besides cancer was short, but there was a slim chance that it was something else (but she couldn't name anything.) I said "What, some new disease that you can put your name on for discovering it?" which got everyone in the room to laugh. Back to the business at hand ... first she numbed the area with lidocaine, an anesthetic that is injected into the tissue. THAT hurt! Then came the needle to actually perform the biopsy, which wasn't so bad but for a few brief, painful moments. Unfortunately she did not get enough tissue during the initial FNA and had to do it again! Ugggghhhh! It was nothing nice! After that, Danny was allowed into the room, where we waited for the pathologist to return with some "preliminary" results from the cytology lab. Not surprisingly, based on my earlier conversation with the radiologist, the tissue was confirmed to be malignant -- what she called "metastatic deposits" in the muscle. Very disappointing, to say the least! They will run all the usual pathology on the tissue, including ER, PR, and HER2 testing. I will see Dr. Green next week, when we'll discuss my next treatment options. I suppose that will ultimately depend on what the pathology report says.

I am glad they will be running more of my tumors through the pathology process. An estimated 20% of HER2 negative tumors will convert to HER2 positive at some point in the metastatic disease process. Not sure if convert is the right word to use, but what I'm saying is that since my cancer was HER2 negative before, there's a 20% chance it may be positive now ... Which, in my opinion, may be helpful in that there would actually be more treatment options for me than strictly the estrogen-related ones. More options sounds good to me!

Well, that is all for now. Another setback, but again we are waiting for more test results before we'll know what's next.

Thanks for reading, and for the prayers.