My Saga

[Velcrocat]

OK, I am not sure exactly where to start or even how to start. I guess the first thing I should tell about which started me on this journey was a panicked phone call from my SIL making me promise to go and get a mammogram. I made the promise and followed through with the mammo. Nothing unusual except because it was first mammo they wanted a second set of pictures so they had a baseline to work from, that was June 19, 2002.

Almost a year later I go for my annual mammo and again they want more pictures. I think nothing of it because this was what happened the year before, only this time it is different. This time they see something suspicious in the right breast and now I need to have a biopsy. July 16, 2003 is biopsy date. I don't get the results until July 28, 2003 (the day before my wedding anniversary). Now I need to know what my options are and what is to be done.

I choose bilateral mastectomies because I am not travelling this road again. Stage is stage 1 (T1N0M0 which means tumour 1, nodes 0, metastasis 0). This looks good. Cancer is infiltrating ductal carcinoma, but it is contained in the breast. The surgery takes place September 11, 2003.

Now come treatment options, guess what, because cancer was all gotten with mastectomy I don't require chemo or radiation. So I am thinking I am home free. The cancer is ER+ PR- and HER2NEU-. Only those with breast cancer will be really interested in that bit of info. It determines what other treatment options are. I opt to have my ovaries removed but discover that there are uterus issues so have total hysterectomy April 2004.

Prior to the hysterectomy I look into reconstruction options. With only one plastic Surgeon in the area doing this I opt for implants. So in January I get the tissue expanders put in. From then on until June I get saline fills in small increments to the tissue expanders. This is to prepare the skin and muscles with space for the permanent implants. June 2004 is the exchange surgery where the tissue expanders are removed and the permanent implants are inserted. Next stage is the nipple areola complex reconstruction. I have this done in August 2004, just before I go back to college for a business course..

My daughter gets married in September 2004 and I have a colonoscopy the Monday after her wedding. By this time in the space of just over a year I have been under anesthetic seven times.

March 2005 I develop some rib pain in the sixth left rib, this leads to x-rays, bone scan, CT scan which all show something. The CT shows the first actual metastasis, so now I need a CT guided biopsy to determine if it is the return of the cancer. I comes back as the same cancer as I had originally. So October 2004 I am now being sent to the cancer clinic in Kelowna ( about 10 hrs away. . . isn't one closer, besides I have family there I can stay with). Before I leave to go I am required to have an abdominal CT which the results of never make it to Kelowna. Upon arrival in Kelowna I have yet another abdominal CT, this shows my liver and other organs are OK. Except it also shows that my lumbar spine at L3&L4 is not fine. More metatastisis, this explains the lower back pain I had been having over the summer. I had attributed it to the new shoes I was wearing for walking, never suspecting a problem with my spine. Five days of radiation follow, along with now taking hormonal treatment for the next five (5) years (almost finished, another year and a half then done) and a bisphosphonate for life. This is to strengthen my bones.

At one point in 2005 I see a different plastic surgeon because of capsular contracture of the reconstructed breasts. This leads to yet another surgery where the implants have to be changed out for a different set. This time I get silicone instead of saline. No problems to date since the change took place November 2006.

Everything seems to be going along fine until recently. Six moths ago I started having some upper body (chest) pain. Nothing was found to be wrong so I dealt with the pain by using ibuprofen and acetaminophen to feel better. This helped along with not doing too much lifting at work.

Six weeks ago I developed rib pain just under the bra line on the left side. When I was in in March for my six month check-up I mentioned it to the Dr. She orders liver function tests, tumour markers and a bone scan. By this time it is becoming routine so I don't expect anything significant to show up. My family Dr last week ordered x-rays of the left fourth rib to see what is going on. I saw part of the radiologist report and he is recommending a thoracic CT scan. The x-rays were last Thursday. Friday I had the bone scan, when I saw the images which were generated I noticed the fourth left rib had lit up like a beacon. I will get the "official" results next Wednesday. But I am now expecting this report to also recommend a CT scan. My personal physician will be away for a month so I hope the Dr I am seeing for the results will go ahead and order the CT scans.

[Velcrocat]

It looks like I am writing a book, not just a little story. It is my story and continues to grow and expand each day. I have to admit right now I am scared about what the end results will be and what that will mean. I guess I better follow through and leave it in God's hands and not just say I am going to do that. After all He knows the beginning from the end.

One of my daughter's doctors have requested I get the BRCA 1 &2 gene test done for hereditary cancer. I just found out my mom also has breast cancer. Where the cancer I had was premenopausal mom's is postmenopausal. Not sure if that will have any bearing on it or not but I have sent all the information I have to the Hereditary Cancer Program folks for evaluation to see if I qualify for the test and if my daughters will also need to be tested.

So many things to think about and yet I don't want to be thinking about any of it. I just want it all to go away. Does that sound unreasonable? Not in my mind it doesn't.

[Velcrocat]

I have been taking dilaudid 4 mg for the pain approximately every 6-8 hours but am no sure it is making a difference. Yesterday the pain while there was tolerable so didn't take anything in the afternoon. I also noticed a pain higher up on my chest closer to the sternum whenever I tried turning towards the left. Today it isn't there but the rib and back pain are back. I hope it doesn't get too bad. I really don't want to be taking the dilaudid if I can avoid it. Wednesday I am hoping to get results.



I just noticed as I was rereading the older posts I forgot to include the test results for tumour markers and liver function tests. The tumour markers had gone from 31 to 65 (about double) and the liver function came back normal (high normal but normal just the same).

[Velcrocat]

Life sucks right now. I went to get my test results only to find out that my appoiontment according to them was for last week. now why would I book an appointment for test results which won't be in for at least another week. That just doeswn't make sense. So needless to say I didn't get the results today. Now I have to go back tomorrow and get the results. Maye the results for thew blood test I had today will be there as well if not I can wait for those til the beginning of May they are not as important as the ones I wanted to get today.

Pain is still there and getting worse all the time. I upped the dilaudid dose by another tablet so now I am taking 6mg at a time and it still isn't eradicating the pain. It is making it tolerable and that is about it. So I am thinking I may as well not be taking anything. Tomorrow I will ask the Dr when I see here what she recommends. Until then I just need to remember to trust God for His care.

[Velcrocat]

Today I saw the dr and as I suspected I will be going for more tests. This time it is a throacic CT scan on Monday. Everything is leaning towards more bone mets. And if that is the case then it will mean more radiation.

The test results I got today for the x-ray says "Lungs are well expanded and free of consolidation and atelectasis. A large, irregular, pleural based mass affecting the left lateral chest wall is identified and irregularity of the 6th rib is noted (old mets site). An expansile lytic bone lesion here cannot be excluded. Is there an underlying history of malignancy with metastases? CT of thorax is recommended in follow-up."

The results of the bone scan read as follows "History is that of metastatic carcinoma of the breast. Posterior acquisitions do demonstrate focal moderately intense uptake of what is felt to reflect the T5 and T6 levels particularly the very posterior aspect of the left sixth rib in oblique views. Minor increase in activity is noted diffusely at what is likely L3c level (old mets). There are no focal abnormalities of appendicular skeleton nor of bony calvarium. Summary: The left sixth rib abnormalities are more certainly suspicious for bony metastatic disease and early changes of same involving the T5 vertebral body and possibly the more posterior aspects of the fifth rib also suspect."

So as you can see there is definitely something going on. We just need to find out what and determine the treatment plan. I wish I was or knew a Dr as a personal friend who could explain all this to me. Needless to say I feel like I have been run over by a train.

[Velcrocat]

CT Scan was yesterday. It was one using contrast. The tech told me the results should be available by Friday.

When I got home from the appointment there was a message on the answering machine to call the onc's office. I called today and have an appointment to see him on Friday. This appointment was booked before I had the scan. When things like that happen it is a little scary. Not sure if I should be fretting or just keep trusting God. Friday will be posting what I hear, here.

[Velcrocat]

The Good: no need for radiation treatment right now. This means I can stay in my home town.

The Bad: medication has changed from Arimidex to Aromasain and from Clodronate daily to Pamidronate monthly (IV infusion). Yea, no more having to wait after taking meds to eat.

The Ugly: there is some progression just not enough to bring out the big guns yet. This was not what I wanted to hear but much better than what I was expecting to hear. Will try the new meds and see what happens.


CT results were not ready today so will get the full report on the 4th of May. In the meantime I am rejoicing in what I have and thanking God for His faithfulness.

Not too much I can add except that some of what was seen on the x-rays and scans were from old mets and not current. But because they didn't have anything to compare with it was not clear what they were looking at. Pain management may well be an anti-imflammatory (naproxen) and a stomach protector (pariet). Will know more about that option when I talk with my Dr on the 4th of May. In the mean time I will continue what I am doing.

I don't know yet when the first IV treatment will be but am prepared for tha time in the chair.

[Velcrocat]

Today I saw the Dr and she tells me there is some chest activity. Why did I have to three different Dr.s before I am told this. Naproxen (NSAID) and Pariet (Acid reducer) have been prescribed for pain management. I am not sure this is such a good combination because of gut problems I have had previously when taking advil/motrin/ibuprofen. I am now required to go for monthly blood tests, before the iv infusion of the new bisphosphonate (Aredia). I am so angry right now because I knew something was happening with my sternum/chest last August only nothing showed on tests. I now need to go for yet another CT, only this time it is a liver CT because of tenderness and possible enlargement. The liver function tests I had in March were high normal but now I don't know what is going on. To be honest I am scared that things are changing way too fast. God help me I am scared. Please pray for me. Tomorrow is the first infusion.

[Velcrocat]

Had first infusion and it went well. When I saw the Dr before the infusion and she examined me I had tenderness on my liver, this tenderness comes and goes. She decided I needed a CT scan of my liver/abdomen. I had that done yesterday. NOW the WAITING begins and we all know what that is like. Nail biting time, hair pulling time, panic time because the mind does takes you down all different kinds of roads. So when you get the results and they are nothing like you expect you can definitely give a sigh of relief. In the mean time try to find something to keep your mind/brain occupied. I know it is easier said than done.

[Velcrocat]

Last night was definitely not a good night. I went to work as per usual at 3:00 p.m. had my first break at 5:15 so far so good. Then I developed some extreme abdominal pain, both liver and stomachj pain. This lead to extreme vomiting about 6:30 p.m. I was vomiting again about 7:10, my supervisor came and asked me if I wanted to go home. I said yes. By 9:00 I am still vomiting so have DH take me to the hospital for something to control the vomiting. The Dr gave me an IV of Zofran and then some tablets top take home. This was defintely better than vomiting. By 11:30 I am home and feeling better.

DH also made a trip to out patients this morning because of nausea and pain. He too was given Zofran to help with his nausea. Again we think this was pain induced because he was having some really bad pain in his back. He was also given 2 shots of morphine and a shot of torodol. That trip to out patients was about 6 hours.