October is Breast Cancer Awareness month, and it’s something I’m always very keenly aware of. On 26 September 2001, at the age of 39, I had a full mastectomy with axilla (lymph node) removal as well.

In America alone, two million women – 1 in 8 – develop breast cancer and survive. Sadly, 40,000 women in America also die from the disease each year, this is about a few thousand short of the number of people who worked at the World Trade Center in New York. Think about those huge buildings and the number of people that occupied them. It’s a very sobering thought. The statistics for Australian women are similar, with over 30 women diagnosed each day. But we’re so much more than statistics. We are women in all walks of life.

I had never had a mammogram before because it’s not something offered to women my age. On the 1st of August, I noticed a change in the appearance of my breast, but didn’t have a lump so I didn’t worry about it too much. I should have! Even this was a sign that I should have paid attention to and went to the doctor for. A few weeks later when I could feel a lump, needless to say it scared me pretty good, and I did go have it checked. It was tested and found to be malignant, and then in further tests it turned out there were other lumps as well, all also malignant and increasing in size. Surgery was scheduled for the 26th of September. The pathology report informed us that the sentinel lymph node was involved (ie, had cancer in it). Luckily though, none of the other 14 nodes showed any such signs.

I started chemo (A/C) on the 1st of November – and put a comment on my webcam page about being bald, and that I’m NOT the one with the beard. 🙂     When my hair fell out, I experimented with my wig, some hats and turbans/scarves. I figured I may as well have fun with this since it’s not like I had much choice about it anyway.

I had about 6 months of chemotherapy (two different types). The first type of chemo I had was adriamycin and cytoxan (or A/C for short). It’s pretty heavy duty. The next type I had was cytoxan, methotrexate, and 5-Florouracil (5-FU) – the whole works is shortened to CMF for short. This site gives a pretty good idea of what CMF is like.

I have photos in my gallery sharing what chemo day was like, and of the day I started losing my hair.

From 8 April to 13 May 2002, I had radiation therapy, Monday through Friday, for a total of 5 weeks. They used electrons instead of photons mainly because they don’t penetrate as far and that way it should reduce the chance of damage to my lungs from the radiation. Being fair skinned and the type that sunburns easily, I had a nasty radiation burn, but it didn’t last too long (a couple weeks) and has healed fine.

Photos from the Radiotherapy Planning Session are also in my gallery.

As of Oct 2002, I’ve pretty much recovered from the effects of both chemo and radiation. My hair isn’t quite as filled in as I’d like, but it’s coming in. Although I’ve heard some people have problems with fatigue that lasts a long time after chemo and rads, I seem to be gaining more energy every day and have been feeling really good – I have a few aches in my ribs leftover from last years surgery, but other than that, I’m certainly feeling more myself these days.

Update – in Aug 2003, I came down with the flu, and ended up breaking some of my radiated ribs from coughing. On and off I’ve been breaking and rebreaking ribs ever since. At the moment, (4 May 2004), I seem to have recovered from the last breakage but I’m being very careful. All up it’s between 4 and 6 ribs mending and I don’t care to make it any more! I also got a flu shot this year as it’s definitely something I regret not doing last year.

14 July 2005

Last week I received the phone call I’ve been waiting for since last November. It was the hospital admissions office – my time on the waiting list for reconstruction is nearly over. The big day is 10 August, and I’m really looking forward to it (kind of!).

I’m having a “Latissimus Dorsi flap” for my reconstruction. It’s where skin and muscles from my back are used to recreate my breast. The other side will have a lift and reduction so that it matches. I’m not absolutely certain that both will be done at the same time. This web page has details about the flap and it’s pros and cons. I won’t be needing any implants though.

The reason I wrote ‘kind of!’ above is because the surgery is quite major and I’ll be in hospital for about a week, with a 6 week recovery time. Someone told me to be sure to stay on top of the pain pills which took me by surprise, and another woman who had the same surgery told me it’s not too late to change my mind and that I could take more time to consider if I needed to. Hmm! She seems happy with her reconstruction, but that does make me wonder. I shall have to ask her about it.

Emotionally, I’m looking forward to at least looking ‘whole’ again… seeing cleavage when I look down would be a nice thing. I had a friend who had this surgery and for her this was the best part of the experience. She was quite pleased with her results and would show them to us BC sisters that were still considering reconstruction as an idea of what to expect. Hers were great! I haven’t really given the ‘pain’ aspect much thought. In fact I’ve really not given it much thought at all. I should probably ask in the BC list to get an idea of what’s ahead.

28 September 2005

Wow, have I ever been through the works with reconstruction. The surgery was on 10 August and they had me in an over-heated room – on purpose to help with the blood flow in the new breast. That was tough. I had the reduction done on the left side and the new breast on the right. Each had different bandaging. The reduction side had soft microfoam bandaging and the new breast had hyperfix tape and gauze type padding. I was quite pleased with the appearance of both. The reduction side was/is amazing. I wasn’t expecting anything that looked as nice as it does. And it was a marvel to see the mound on my right side there. Surgery was on a wednesday and on Sunday I had a large area above the stitches on the new breast that was red, swollen and tender. The attending doctor really checked it throughly. It wasn’t a build up of fluid and they did an ultrasound on it that came back with nothing serious, again no build up of fluids. The next morning the main surgeon came in, saw the area and said it was just edema that will go away and then said I could go home. This was only 5 days in hospital so that was a bit of a surprise, but you just don’t argue and try to stay in longer!

A week later, I had my dressings checked in the clinic and the doctor admitted me for an infection (the stitches on the right breast had become infected and it had pulled apart near the side where my arm is. As I type, this area is STILL healing. I was admitted on a Thursday and came home on Saturday after a series of IV type antibiotics.

Meanwhile, I’d developed blisters where I’d had the microfibre tape. I still have two areas that are healing from this. We’ve also discovered I can’t use a number of tapes and even specific padded type bandages such as mellolite.

A week after the 2nd hospital visit, the next doctor to view me decided I needed a skin graft and scheduled that for a Monday. They used skin from my thigh and wow, that hurt like hell. It’s mostly all healed up now though, but the skin graft didn’t actually take. A few strands did, but that was about it.

We were having nurses in to change my dressings but now we are in charge of this and even better I graduated to only having to go to the clinic every two weeks instead of once a week. I currently have bandaging on my reconstructed breast, on the middle of my chest (where a huge nasty blister had developed) and under my right breast where one of the areas of stitching became infected (and I think this was originally a blister too). And another bandage on my back. I had about 17 inches of stitches on my back but fortunately that hasn’t been too bad.

I’ve needed the wound area in my back to be drained a few times too. This isn’t much fun, but being filled with fluid is much worse. It gets to hurting after awhile. Twice, they got about half a litre of fluid from me. That’s just an amazing lot to have sloshing around in your back.

As if I didn’t have enough pain and agony from this, I also developed a nasty tooth ache and had a tooth out last week. They either got the wrong one or the socket has become infected as I’m still in heaps of agony from it. Oh, and we’re moving. And we have to deal with some work related stuff that’s the last thing you want when you’re about to move. Stressed? Me? You bet.

I still have a red and hard area above the scar line on the right side and it really detracts from the view but I do like how things look when I’m wearing clothes, and it feels so much better to feel some padding on my chest. It really didn’t feel right with no padding. So yes, the results are pretty good, but the scar is going to take a while to heal and it’s not a nice little scar, but a big angry one. I wasn’t expecting that, but that’s not how it looked right after the surgery, it became this way from the infection.

Would I do it again? At this stage I don’t know if I would. I think I’d wait until my blood counts were better as it still shows that I’m down quite a bit even with taking iron tablets. It’s just really been a hard time and I hope in the end I’ll decide it was worth it. I’m sure once I forget about all the hassles and aches and pains I might have a different opinion.

A New Twist 25 April 2007

For the last two weeks of February 2007, I felt quite ill and was running a fever. A red mark appeared on my back and in the course of a week it went from just a line to a very large, angry, red and hot patch that seemed to follow the surgical scar from my reconstruction. I was on antibiotics for something else, and over the phone (as he was fully booked) my doctor said the antibiotics should take care of the infection. It didn’t. It turned into a very large abscess and by 6 March, I had to be admitted to hospital for emergency surgery to drain it. As of today, I’m still in the process of healing. The surgical wound is on my side, and they are healing it from the inside out, so I have a about a 4cm hole in my side to access the pocket inside my back that is healing. The pocket extends 10cm – from my side across my back almost to my spine. It’s smallish on the outside, but very large inside. I’m told it will take about 3 months for it to heal. This, two years after my reconstruction certainly wasn’t anything anyone could have ‘expected’. I was also told the abscess had to have been developing for a long time. The only thing I can think of that may have started it was a nasty fall I had a year ago last May. I fell backwards out of the bathtub onto a tiled floor and landed squarely on my back. I sure was sore from that for a long time, and had xrays the next day that didn’t show anything broken, but my doctor did say I could have deep tissue damage, and well, I probably did. So meanwhile, I’m just concentrating on healing and taking it easy. It sure can be frustrating at times, but I’m grateful it was just this and not anything much worse.

Still Healing 3 August 2008

It’s been nearly 17 months since I had surgery for the abscess, and I STILL have a hole in my side and need to see RDNS (Royal District Nursing Service) nurses twice a week to have the dressings for it changed. Meanwhile the scars on my reconstructed breast have faded somewhat, and my new GP didn’t realise it was a reconstructed breast at first when she saw it, so the breast reconstruction is a success, I think. I certainly prefer what I have over having to wear a prosthesis. The long time healing and abscess was not something anyone could have expected. It is a lot smaller than it was, but doesn’t seem to be making much progress towards filling in. Fortunately it is no longer painful, and the dressing and amount of tape needed has decreased steadily over time which is a big help. I have allergies to many different adhesive tapes and even the one I can use (op-site) can cause irritation after a day or too. Someday it will all be a distant memory.

Healed and Moving on 25 September 2010

I had that hole in my side for over two years , but it did finally heal. The plastic surgeon saw me for a follow up on the reconstruction and suggested that the side be closed surgically (it had finally reached the stage where it could be closed surgically), and at the same time he’d do the nipple for my reconstruction. I wasn’t too keen on having more surgery, but I went ahead.  About six months after that, they added some colouring of the nipple reconstruction by way of tattooing. I’m still not all that happy with the finished tattoo job, but. Who cares. I have an OK reconstruction, I don’t have to think of breast cancer every time I change my clothes, and it looks good enough that it can almost pass for the real deal from a distance.

Although I’ve had other health issues (Diabetes, Sjogren’s Syndrome, Osteoporosis, Osteo-Arthritis, Ugh, that’s enough don’t you think??), I’m otherwise ‘ok’ and really really glad to be alive and as well as I am, given all the stuff I have.  My time with breast cancer has completely changed my view of the world and life itself.

One of the cruelest things about breast cancer is that even though you get a lumpectomy or mastectomy, have various treatments to remove or prevent future cancer cells, many times within years or months it turns up again in other places, sometimes (not always, fortunately) with devastating consequences. This part of the whole thing really ticks me off…. I’m not alone in this though, as a friend from the BC Mailing List recently commented:

I know that most people don’t want to hear this, but this is what I feel should be put out there in the public eye, not the perky and chipper news of 90-95% surviving, unless there’s an asterisk after it (and it better be a walloping, humongous asterisk too!) that says:

“This statistic is based on 5-year survival only. It doesn’t imply that all these people are well. It doesn’t imply that they will still be alive at 5 years and 5 months. It doesn’t mean they’re cured. These are merely the people who are still here at this point. Unless you would personally be happy to survive 5 years and then die the next day, please do NOT under any circumstances tell a breast cancer patient that he/she is cured, UNLESS you have head-to-toe protection in the form of full-body armour and UNLESS your own life insurance is paid up. NOTE: BC patients are not a violent bunch, but they do not enjoy being told they’re cured when that’s not the reality, and they want you to realize that bc is more serious than the common cold and a hangnail. Thank you very much! Signed, The Management”

Sadly, during the last year the BC List suffered the loss of our friends and sisters with about one death of a list member each month. Many of these women lived with mets for many years with a good quality of life, but it’s still about a dozen lives ended way too soon.

Breast Cancer Network Australia has produced a comprehensive Kit for women diagnosed with breast cancer within the last 12 months. The My Journey Kit is a fabulous resource developed by women who have had breast cancer. It is available free of charge by calling 1300 785 562.

The My Journey Kit includes information about breast cancer and its treatment, useful contacts and resources and practical advice from other women who have had breast cancer. It includes the My Journey Personal Record, where women can record details of their appointments, treatments, costs and questions.

Copyright 2001-2010 Gaelyne R. Gasson

All rights reserved
Created 05 October 2001

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