I guess now is as good a time as any to do this….I don’t think that waiting will make it somehow easier. My family remains optimistic, and would probably think this message is pre-mature. But the way I see it, I need prayer, and so waiting even another day can make a big difference in how my tomorrow may be…………
On 3/18/03 I went to a scheduled annual ob/gyn check-up. I knew before I went that I wouldn’t be able to go through the normal check-up procedure, but I kept the appointment anyway, because I had been noticing some physical changes in my breast that I was concerned about. While there was no “lump”, I knew the incredible swelling in my breast and underarm was indicative of something. So I went to the appointment requesting a breast exam. I got the usual lecture from the NP about the normal changes a woman experiences in her breast during the menstrual cycle. And then she examined me. The look of shock and dismay on her face instilled immediate fear, as she hurried out of the room to call the Dr. in to have a look. He followed the same routine in examining me, and surmised that there are “some breast diseases that present this way”, but he was unsure, and wanted to refer me to a surgeon. They instructed me that I would hear from the referral dept. within 2 weeks to schedule an appointment They also ordered an ultrasound of the symptomatic breast. I was told I was “too young” for them to approve a mammogram.
When I left the Dr.’s office I called to schedule the ultrasound from my cell phone, hoping to get it that day, as I was off of work. I was unable, and scheduled it for the following Monday, being told that I may not be able to have the ultrasound done, if there was no clear “mass” for them to observe/target.
I immediately began searching the internet when I came home. And I came across some alarming facts that prior to this incident, I was completely unaware of. What I basically learned is that all the symptoms I was having were signs of a rare and particularly aggressive form of breast cancer. This was Good Friday. I spent my Easter weekend biting my lip as I praised God for His glorious resurrection and the hope that He brought into my life. By Monday I decided I wasn’t going to wait for them to call me for an appointment with the surgeon. So I called them. They wanted to schedule me for the following week, but I insisted that I had to see the Dr. this week. So they “squeezed me in” for 3/24. In the
meantime, I went for my ultrasound.
There was nothing particularly remarkable about that, except that they noted axillary swelling, indicative of possible swelling in 2 lymph nodes. They also noted the same clinical signs that I had already been living with for a month. The ultrasonographer was alarmed enough to suggest to me that I needed a mammogram. When I told her that it was not approved due to my age, she said she would talk to the radiologist, who could approve the diagnostic anyway. She left and spoke with him, and came back to report that I needed to stay to have a mammo, and they would “squeeze me in” between appointments. Never having had one- that was an experience! The radiologist’s report was not incredibly indicative, but it was suggestive of this cancer I was concerned about.
So I waited a few more days, and saw the surgeon on 3/24. He repeatedly told me that because of my age, I was not at risk for breast cancer, and that it is not “unreasonable” to assume a breast infection. I humored him only because I had to respect his conservatism, but I was still certain that this was not a breast infection. When I breast fed Justin nearly 14 years ago, I had mastitis. It’s like having a bladder or yeast infection- you NEVER forget those symptoms, and this just wasn’t the same. But I left the appointment, filled the script, and took the first pill. He had scheduled a follow-up appointment for 5/5- nearly 2 weeks away!
After a heavy dose of antibiotics, by the third day of not seeing any improvement, and maybe even a slight worsening of symptoms, I began to think that I should not wait the 2 weeks to go back in. So I called back and demanded to see the Dr. again, despite their protests that he was not available this week. I saw him on Monday, 3/28. He did another ultrasound with his hand-held machine, but couldn’t find anything concerning. He did note the clinical symptoms (the appearance of my breast) seemed to be somewhat worse. However, he also “felt” the ‘lumpiness’ and ridges in my skin to be “soft” and suggested this would be indicative of infection. Perhaps this is an infection that has
abscessed and is unable to be effectively treated by the antibiotics? He said that he was going to do a biopsy, and would know immediately if it was an abscessed infection, or “something more insidious like cancer”. If the former, her would remedy the problem right there, and I’d be on my way. So, the procedure was scheduled for the following day.
On 3/29 I went in to the surgical center for the biopsy. They put me under general anesthesia, but not without concern, as my blood pressure had skyrocketed to 158/113. I think it was stress. Anyway, the surgeon made two incisions and removed half my aureole and a good portion of tissue underneath. When I woke up I was told the collection was sent to pathology- I don’t have an infection. My follow-up appointment is 5/5. I am expecting to be told that I have Inflammatory Breast Cancer. Many people have encouraged me to “think positive”, and they seem to be having a hard time understanding my need to accept this in bite-sized pieces. I just don’t want to be so shocked on May 5th that I can’t get through the rest of my day. And yes- I have cried at least a dozen times the past few weeks. I also bought a journal to start journaling my
thoughts for Amanda to appreciate when she becomes a woman.
In the meantime, I have contacted the IBC Research Foundation to ask if there is a viable differential diagnosis (besides mastitis) that could account for my symptoms. I am told that there is not. I removed my bandages this morning, and one thing is certain- my breast will never be the same again. Older women have suggested to me that it wouldn’t bother them so much. But I am a young woman- with a wonderful husband. This isn’t going to be easy for me…….
If and when I get the pathology reports back indicating IBC, I will have the opportunity, if I meet the “criteria” to participate in a clinical trial specifically for this rare type of breast cancer. I think I will try that. I am already developing an herbal regimen that if nothing else, helps me feel a little more in control. But honestly, the odds are not too good. Data collected shows that the 5 year survival rate with this type of cancer AFTER all systemic treatments (which REQUIRE chemo, radiation, and radical mastectomy- in that order) is still only 50%- that’s up over 10% from 20 years ago! Compare that to the 85-95% survival rates for all other types of breast cancer, and maybe you can understand my concerns. IBC is automatically staged a IIIb cancer (within I-IV staging)- and often is a IV when diagnosed. The reason for this is that by the time the symptoms present, the cancer has already spread to lymph nodes, and possibly to other parts of the body. And it grows extremely fast.
The reason I am taking the time to write this long and detailed account of my experiences the last two weeks is because first of all- I NEED PRAYER! If God is going to do a miracle, He wants all the witnesses I can muster up! And secondly- I want people that I care about to understand that you don’t have to have a lump to have breast cancer. Maybe my story will alert you to symptoms that you might otherwise not consider…….. even if by some miraculous dealing of God this turns out to be something other than cancer- I will be so grateful to have had
the opportunity to share this with you.
When you have time, take a look at this website, which outlines what the symptoms of IBC could be. You never know when you might have to reflect back on this little piece of knowledge………….
This is just a quick note to let you know how yesterday’s appointment went for us. The good news is that once the Dr. removed the surgi-tape, the swelling had gone down enough so the tissue removal was not as obvious, and the scar is a nice elliptical pattern. The bad news is that all that is most likely moot- because he wants to do a mastectomy. The surgeon interpreted the pathology report to mean that I have cancer in the lobules and pre-cancer cells in the ducts (ductal carcinoma in situ). His solution is to remove my breast. The problem is this is a Stage 0/Stage 1 cancer, and shouldn’t translate to any of the symptoms I am having. It certainly doesn’t correlate with the possible lymph node involvement (spread of cancer), possibly evident by my enlarged lymph nodes. Non-invasive Stage 0 cancers don’t spread, as far as I understand it. Even the surgeon admitted this is “atypical” and he is somewhat confused by the mismatched pieces of information. He is going to take it to a “tumor review board” this week. But he seems to be fairly certain that removal of my breast is the only option because the cancer cells have no clear margins. What that means is that he has no way of determining that he cut all the cancer out. So, we’re seeking a 2nd and even 3rd opinion. In the meantime, I am scheduled for a mastectomy on 5/19. Please continue to pray- and especially that God would lead us to the right Dr. who has the discernment and wisdom to guide us.