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Monday, January 23, 2012

Radiation Oncologist

Exactly four months since my initial diagnosis, with my rescued and nicely manicured wig in place (thanks to Maria and her sleight of hand), Al and I drive through a rainy Brisbane afternoon to meet my 'radiation oncologist' for the first time.

I've rescheduled this appointment no less than three times so I'm glad to finally be meeting her.

The Radiation Oncology Mater Center (ROMC) is directly opposite the Mater Mothers, and I can't help observing the juxtaposition of birth against a process generally associated with dying.

Located in a fairly old red-brick building, I present myself at the front counter and afterwards, go to sit in a virtually empty waiting room. I don't know how long this is going to take so look around for some reading material.

I am quietly amused to note the stack of novels on offer. Just how long do people have to wait here? A cursory inspection reveals that, thankfully, it's more a 'Mills and Boon' rather than a 'War and Peace' kind of waiting period. The tea urn, microwave and television also do not augur well, suggesting one should get comfortable.

It isn't too long though before I'm called in by Dr Judith Cox. She's older than I had imagined, a lady with a trendy short cut who immediately strikes me as being open, kind and friendly.

In what passes for her office, there's a little bit of a kerfuffle as we realise that several pieces of information are missing from my file and she's not 100% on the details of my case.

She doesn't know I've had a mastectomy, and then, I can't remember if I had one or two lumpectomies.

As we wait for the missing paperwork to be recovered, I launch directly into my pressing concern: whether I can wheedle my way out of radiation.

I talk about all my other friends with radiation, Kim who hasn't had chemo and I don't think she's had radiation either, Chrissy who didn't have radiation, Cathy who didn't have chemo, Mary who didn't have a mastectomy. Why do I have to have all four, including the hormone treatment? I'm going to have the other breast off. I'm pitching as hard as I can with Al also offering up any arguments he can.

You see, if I'm to have radiation, that will add weeks to my treatment.

But most vexingly, it will mean that I will have to wait six months until I can have a reconstruction and then, my options will be severely limited because of the extent of damage radiotherapy can do to your breast tissue.

The business of getting on with my life will be severely retarded.

As it is, initially, Dr Cox thinks I've only had one lumpectomy and she leads me to believe that perhaps radiation is unnecessary.

I can't believe my luck!

But when Dr Cox says she needs to see the results of all my procedures before she can provide a definitive answer, my hopes are quickly dashed.

I am interested in what the pathologist had to say about the results of my mastectomy: "The sections show residual classical lobular carcinoma in situ... There are three foci of residual invasive lobular carcinoma in this area measuring up to 2mm. There is extensive lobular carcinoma in situ throughout all quadrants of the breast. Further 2mm focus of invasive ovular carcinoma is present in the lower inner quadrant. The invasive and in situ carcinoma appear well clear of margins of excision. There is no lymphovascular invasion. There is no invasive ductal carcinoma identified. No lymph nodes are identified..."

To a layman, it would appear that surely, all is good? The margins are clear. The lymph nodes are not involved.

But Dr Cox is concerned about the occurrence of carcinoma in the inner quadrant which is the area closest to the sternum.

She produces a pen and starts writing in my file. She adds up the findings in the pathology report for each procedure I've had so far and it's close to five centimetres when she's finished.

I've already been through this with Dr Lambley so I'm not surprised.

Dr Cox says that my breasts are not particularly big (really!) which means the occurrence of carcinoma closer to the chest wall is a concern.

The verdict, alas, is that she strongly recommends radiotherapy. In fact, the look in her eye suggests I'd be a fool not to go through with it.

At this stage, it looks like five weeks with around 25 shots to be given in that period although this is still to be confirmed.

I ask her about side effects and she mentions skin changes in the treated area.

I ask her about fatigue and, apparently, if you've had chemotherapy, you won't notice any difference. (The fatigue can be chronic if you only have the radiation).

Dr Cox says I'll need to present next month for a 'planning meeting' and then, I'll commence radiation three weeks after my last chemo.

Apparently there is presently a 6-week wait for access to this service but I'll be sweet as I've come in to see her early enough so I'll be in the queue.

I can't say I'm excited. In fact, I feel as flat as, well, half my chest. It sucks.

That's five more weeks of being treated like a 'patient'. Five more weeks of hospitals. Twenty five more days of sitting in waiting rooms. An extra 50 hours minimum of travelling.

I know I should be grateful. Yesterday I spoke to Eddie who is doing some landscaping for us. He wanted to know about my bald head so I explained my situation.

Eddie used to be a bodybuilder. But he was also a smoker and you can tell from the raspy voice and the cough. (It's funny imagining him pushing weights and stopping in between sets for a drag on a Winfield Blue). Eddie had radiation and chemotherapy for both thyroid and pancreatic cancer he tells me. He received his treatment at the Atomic Research Centre in London. As a result of his chemo for thyroid cancer, the poor bugger lost all of his teeth. They fell out one by one. He was in his early 50s at the time.

He showed me his teeth and tapped them with a finger. "All false," he announced.

"Well, here you are live and kicking so I guess it's all worth it," I said.

"Yup," said Eddie. "I've got nothing to complain about."

"Yeah, we're really lucky, Eddie," I replied.

I'm lucky I have such great support - from medical staff, from family, from friends.

I'm lucky in so many ways.

Today my race simply got a little longer.

I'm just going to have to dig deeper for that second wind and hope like hell that when I cross the finishing line I won't be completely cactus.

What is there to do but buckle down.

2 comments:

  1. Hi Brownyn

    Sometimes it is hard to feel lucky, even though we are.

    I am eight years out from my Breast cancer diagnosis now. I had High Grade, HER2+++ non hormone sensitive Invasive Ductual Carcinoma, that spread to the lymph nodes (one lymph node was a 5cm x 5cm x 3.5cm tumour). I had a lumpectomy, axillary clearance, Chemo, Radiation, and more Chemo.

    Its funny, for me the most devasting part about the cancer process was the threat of early menopause and sterility. I was 37 at the time of diagnosis had not had children. Hubbie and I had started undergoing fertility investigations a few months before. In my mind children had always been, the reason we are here on earth. Chemo put me into menopause. I am nearly 46, and only really just starting to accept I will never have children.

    My cancer treatment went on for about 14 months, and about half that time was spent as an in-patient. I had so many complications during treatment, lots of infections. The fevers and general malaise from the chemo sent my epilepsy out of control. I lost my business, couldn't drive for over two years. I had so many obsure health issues for months after the treatment finished, it really knocked my body and my head and my confidence around.

    With the Radiation, tiredness doesn't get you until you are about three weeks in (so only when you are just about finished), and I didn't find it anywhere near as bad as the chemo tiredness. The blisters, burns and skin peeling can be difficult, but calenda cream and gentle massage helps reduce effects of burning and hardening of the skin and tissues a bit). In my case the radiation triggered the development of lymphoedema in my arm, and because I had to get into some funny positions to avoid irradiating my heart (my tumour was in the breast area over my heart), my shoulder was injured too. I ended up with a large DVT in my arm shoulder and neck. This meant I was on warfarin for over a year), and spent weeks in hospital on heparin pumps getting what seemed like hourly blood samples drawn (in the end they had to use pediatric tubes and draw blood from my feet because my veins were refusing to co-operate!).

    I didn't feel very lucky while I was going through everything. I felt like my body was failing me, my mind was going, and at times I did not want to go on.

    But I was lucky... the lymphoedema went down to a level were I no longer need to strap it or wear a compression garment (though I still do occasionally when it aches). The other plus is the swelling from the lymphoedema in the breast that had the lumpectomy helps even up the size a bit (Though I am still quite lop-sided LOL!!!).

    I was lucky, I got into a Trial for Herceptin for Metastatic Breast Cancer (a drug that would have otherwise cost over $40000 for a year). I think this drug saved my life.

    I was lucky, I went into hospital to get investigated for fevers that had been plaguing me for over six months, because that is when I found the first lump.

    And yes - I am lucky I am here now, and have had seven years in remission so far.

    Cancer changed me, it has made me reconsider priorities in life, and realise you have to live and enjoy live now. None of us really know how long we've got (there could be a bus with my name on it tomorrow).

    Despite all this talk about good luck, right now I do not feel very lucky. Today I found another lump in my other breast... It wasn't there when I had my last mammogram in August.

    The earliest appointment I could get is for ultrasound and mammogram is just over a week away. Hopefully this is just another scare (I have had two since I finished treatment). It is hard to wait and push it to the back of the mind...

    Sometimes you have to really work at remembering just how lucky you are.

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  2. Anne, thank you so much for sharing your story with me. I cried after reading your post. I feel so sad about what you have been through and your ongoing concern. I know this is something that dogs all my breast cancer friends... how long you have, if it'll come back, what's ahead. I know that many, many women, including my friends, have had a much tougher struggle than I.

    Like anything, it is a matter of degree and I suppose, in the case of breast cancer, the ultimate degree is when someone plants one of those pink ladies in a garden, in remembrance of you. Anything that averts that in my view is luck :))

    Today I heard about the lady who won 50M pounds on the lottery. Somewhere on this planet right now, someone is celebrating - a win? a birth? a new job? some fabulous accolade?

    What can we do other than celebrate in our own way - a good blood test. no infection, successful treatment, the friendships we solidify, the love we discover, and, in the end, making it to our dotage with a good story to tell about how we beat cancer.

    I will pray for you Anne. I hope that your latest lump is just a scare.

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