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Sylvia C.
Sylvia's e-mail:
Diagnosis: Infiltrating (or Invasive) Lobular Carcinoma (ILC)
111B and grade 3
Fear of Recurrence

My Experience with Breast Cancer

It was Jan 31/02 and I had just returned from work. While removing my clothes for bed I looked into the mirror and was shocked to notice that one side of my breast was larger than the other, fell to the inside, and felt like it had something in it. It made me think of the patients who came in with breast implants, since thatís what it felt like. A few months earlier I had noticed several times that my breasts seemed to be hot to the touch and I wondered if I had an infection. My doctor thought I may have lupus, and I wondered if it could perhaps be from that.

I have always had a struggle with numerous medical problems. For years I have had hormonal problems that caused not only a lot of problems with continual vaginal bleeds that I took hormones to stop, but also other procedures such as D&Cs, etc. As a result of these hormonal issues I developed diabetes and thyroid problems (first hyper and then years latter hypo) and also serious blood pressure problems that the doctors felt could cause a stroke. 

In May of the previous year I had had a mammogram in a mobile unit that comes into town every so often. I received a note to go to the hospital in a nearby city the following month in June to have a follow up mammogram as something apparently looked suspicious. The group who reads the x-ray decided that there was no real problem and to repeat the mammogram in 6 months. Although I did ask my family doctor to refer me to a specialist to see what he felt, he said not to worry and just to wait the 6month period. 

During those 6 months our family went through a severe crisis as one of our 2 sons was killed in car accident as a result of falling asleep at the wheel. I was seeing the doctor on a regular basis as I was off work on a medical/stress leave as I was not capable to work full time for a twelve hour shift plus drive 60 miles to work over winding roads. In September I asked my doctor if I should go for that mammogram and he would tell me each time to not worry until after Christmas and New Years. Never once would he check my breast and/or the lymph nodes under the arm. I asked again in October then in November and after that never asked again till I found the major lumps. I returned back to work in November and once again was very busy working and driving, and time went by quickly.

That January after I noticed that the breast was lumpy, I really felt this was going to be serious. My breasts are dense but still you could feel what felt to me like implant. The following day I made an appointment to see my doctor. First he booked me for a mammogram, and then when the report came back I was sent to the specialistís office for an aspiration biopsy. When I arrived at the office I was sent to the hospital as the doctor had been called there and I had the biopsy in ER. Then I was called a few days later to return to this same hospital and have a wire instilled with the aid of the mammogram. They would put the wire in an inch or so and re-mammogram my breast, and then push the wire in another inch and continue doing so since they saw what was a microscopic tumor that they felt would be a cancer up against the bone. Following the insertion of the wire I was scheduled for a day surgery to remove that spot. My doctor took another few days before he would! talk to me by phone. When I was sent home from recovery that day I did not see him, but he had left a note saying he would be in touch with me in a few days and to take the pills for the pain as required. The whole time I felt I was losing precious time as each procedure took about a week, while I continued to work and book off time for each of my appointments. The wire biopsy was the 5th of March/ 02. I stopped working after I had the deep wire biopsy as then my breast never stopped draining and was painful, and in my work I could be injured easy.

It was March 8 when I finally got the call from the specialist to state I had cancer and that when they opened me up to follow the wire there were numerous cancers and all of different types. He felt that my best option was to have a mastectomy with more treatment after, and he was scheduling me for the following Monday. I was expecting to have been told I had cancer so to me it was not a total shock as by now more than a month had passed since I first found the lump and even then felt it would be cancer just from what I felt. However I was not impressed to have to have a mastectomy as I had had routine mammograms. I think too that after having to deal with the loss of my son just a few months before I was not as worried about myself, as I was still in shock over his death and I am dealing with that a lot still.

March 11/02 I had a mastectomy. I was only 12 hrs post op when I had numerous body scan to see if the cancer had spread to a vital organ or bone. Although the MRI and CT scans do not see small tumors and may miss something, it seemed to be clear. I had all along and even still the support of my husband, my son, my sisters and a special close friend as well as others. I was in the hospital for a few days and then sent home. My roommate is someone I will never forget as she was a city councilor and she was always doing business on the phone or watching t-v. She left the drape pulled blocking the sun for me and I found that very depressing. I was going thru cancer she had had a minor bladder repair. Before I was discharged my doctor gave me a book, All You Need to Know About Cancer which I thought was very kind of him.

I was told I had Infiltrating (or Invasive) Lobular Carcinoma (ILC) that is not seen on a mammo as well as it should be and it has a greater risk to go into other parts of the body than the other breast. My surgeon was always positive. He never told me more than I wanted to know, although he did tell me that he was not able to remove all the cancer as it had spread to the surrounding tissue and that the lymph nodes were hard and matted. He never removed any lymph nodes as the cancer was spread right through and it would be impossible to do so. Apparently my cancer had some rare components I cannot remember now, but it was classed as infiltrating ductal carcinoma.

The following month, I started chemo. Since it was a big drive, we stayed in a hotel and made it into a kind of a holiday since the doctor visit started early in the day, followed by the lab and then the chemo. I was put on the strongest chemo as my oncologist said that it was necessary and that we could not waste much time. Chemo was started following numerous heart scans (muga heart etc) to insure that my heart was going to be able to handle the treatment. It was called cef (which is cefuroxime, epirubicin, and cyclophosphomide). It is used only in a couple of Canadian provinces as it is very expensive. At that time my province was considering charging patients for breast cancer treatment as it was getting too costly (due to high numbers with breast cancer) rather than billing the medical services plan. My chemo was 2 weeks on and 2 off for a series of 6 months. I always had a rough time with the chemo, as I would have nausea and vomiting or just plainly feel ill! with or without the numerous anti-nausea meds I was on. Some were very expensive. The cyclophosphomide would give me diarrhea followed in a couple of days by fatigue that would cause me to sleep for the next 3 days. This treatment would coincide with the beginning of my period, so I would end up very diaphoretic or sweaty. I would literally be soaking so I would wake my hubby and he would help me change the bed several times in a night as well as my nightie. Eventually I got so tired of this that I would wrap a sheet around me and change it plus my nightie and it made it less work and then did not have to wake my husband. 

Towards the end of the treatment I was getting to the point where I would rather have stayed home as I was so extremely fatigued and it was not lifting. I would look for the number to call to cancel my treatment for the next day, however my kind husband would start packing the car and help me shower and get my suitcase packed and we would be off. Some days I slept all the way there but at least I made it.

When we got there we would do something to distract us like meet an e-mail buddy for coffee or maybe go to the casino or shop a bit and then have supper out. On the chemo free weeks we did some camping with our grandkids as available and kept busy doing other things, so we could forget for a little while that I was dealing with cancer. During all this time we were grieving for our son who had been killed.

I seemed to do well on the chemo free weeks and my doctor always put me on antibiotics on the 10th day in my cycle, as I seemed to be run down by then. I actually delayed my chemo by a week in the middle of the treatment due to the first anniversary of my sonís death. This delay gave me just enough of a breather that I felt I could carry on with my treatments. I finished chemo at the end of September.

I was to start my radiation in October. I had gone and had my tattoos done, and I had a lot of trouble doing so due to my arthritic problems. We got it done, however, and I would be called to start my treatments somewhere in the next period. In the meantime I woke up one night and was having extreme problems breathing. Finally after struggling awhile I woke my husband to take me to the hospital. I had x-rays and a ventalin treatment and was put on antibiotics. The doctor was concerned about my x-rays and suggested that I come every 4 hrs for a ventalin treatment, and to return the next morning so that he could reassess me. It was a struggle to come for the frequent treatments and I just kept getting sicker. The following morning I was admitted to hospital. 

I continued to have extreme problems breathing and was starting to fill with fluid as well, first one leg, the other, then the whole body. I had been losing mobility from arthritis and now was going down faster. I had difficulty dressing myself, etc anyway but now this severe breathing problem made it even more difficult to dress independently or bath. I was very weak without oxygen, as my oxygen was dropping so abnormally low with any amount of exertion. I remained in hospital as I was waiting to see a respirologist from out of town, and I needed numerous tests like CT scans. The respirologist wanted to do an open lung biopsy to see what was going on. 

I finally got to see the respirologist, but all the tests were taking a lot of travel time and I was having trouble breathing and needed to port a huge tank. I needed to be set up with home oxygen. Since my hubby worked weekends he was concerned about leaving me as I was not breathing well. Our son was working out of town, so it was quite a struggle for me. Finally, I got called for radiation but the technicians were not happy as my tattoos were off and so everything was cancelled until I could be rescheduled. 

This was a difficult time for me as I could not dress myself well and I was so full of fluid I felt like I would crack with every movement, plus I was on oxygen 24/7. Finally I was called and tattooed but then had to wait again. In the meantime I was started on tomoxophen I was surprised about it and questioned the radiation oncologist as I was initially told it would not work in my case. He said since I had a tumor that had a minimal receptor to estrogen/progesterone he thought it was best. I finally finished my radiation just before Christmas. We stayed in a hotel to avoid winter travel since it is 75 miles away and I required daily treatment. I was lucky that a friend would take me Monday as my husband worked that day and then was off from Tuesday to Friday. After the Friday treatment we would head home.

I continued to have severe problems breathing until I was started on another diuretic in late February. When I saw the respirologist in March he was able to set me up for the open lung surgery to rule out metastases to the lung. Although he did not find mets, he says I have everything else going on in my lung. I did not seem to require my oxygen as continuously as in the beginning, which was a real blessing. He says I will need a 6 month CT scan to watch my lungs as the chemo had caused problems and that I have a heart problem, a cardiomyopathy (enlarged heart and so it does not pump well) from the chemo as well.

In April I saw my oncologist. She tells me that they never thought I would have made it this far, let alone finish the chemo since my cancer was so widespread and the lymph nodes were hard and matted. They had felt the cancer would move through quickly. She told me to go on a trip and do what I would like to do while I am able, as I have little time left as there is no way of knowing . She also said they do not know for sure if the cancer was killed or slowed as there is no way of knowing and that my risk remains high.

As of today I remain on oxygen as needed which is usually at night or if I am having difficulty during the day. I am not able to walk too far, so when shopping I have used a scooter but I keep busy with my husband. We go out of town a lot and visit out 2 grandchildren from our son who passed away. We make plans for the future. 

So far I am improving and keeping active, and have been going to the pool to do exercise. I look forward to a long and positive future. If, however, I am to face cancer again I will be ready for the fight as I will face it head on.

I will update my story some time in the future.

Update: 4 September 2006

Next year will be 5 yrs for me ... so far so good.

My doctor took me off the tomoxophen and I am now on auromacin.

I recently took a trip with hubby the 2 grandkids from where we live in BC Canada in a truck with a fifth wheel to a wedding in Winnipeg and stayed there a week. We returned home by going to Dauphin MB to see an uncle who is only remaining sibling of my father and is over 90, you never know how long he will survive.

Then we were off to Yorkton to see more relatives and home via the Yellowhead road system Hwy #16. Once I reached the mountains I was struggling to breathe and my respirations had more than doubled when moving but would be over 30 when resting so I needed to use my oxgen as I got closer to home. I was able to see a doctor here in ER and I guess he thought I had a bug on board and gave me anti-biotics and a ventolin treatment and I went home and have been improving so do not know whether was the anti-biotics I needed, was tried and exhausted or it was the altitude that did this.

It was definitely scary anyways and I am getting better as so it goes ...


Sylvia's e-mail:

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