Category Archives: cancer check-ups

jennt28

December 7, 2014

Such a gap… 3 years…

There’s been changes of course. Change of job. Moved house.

Both directly a result of the whole breast cancer experience.

The job change was needed – to move away from living and working with cancer. And now I sit in a children’s hospital research centre. Managing paediatric studies is pretty far from cancer. Particularly since this hospital has a separate oncology group and my centre oversees everything else. And yes. At this point it is “my” centre as I manage the centre and the staff and projects.

The house move? Well we moved from our big house to… A big apartment. And the kids all came too – which is why it had to be a big apartment!

Our lives have become simpler. Less tied to maintenance and upkeep. And for the first time ever I have a garden. Actually, three gardens on three balconies. Strawberries. Tomatoes. Hedges. Grapes. Lettuce. Herbs. Geraniums. Lots of geraniums. All red to remind us of our time in France earlier this year. The image here is of the balcony off our bedroom. Watching a summer storm rolling in.

And yes. Just a few days ago the third year anniversary of my breast cancer diagnosis past. No sign so far of it coming back – but my annual scans are due in January so an element of anxiety is setting in. Particularly in the early am when I’m lying awake (insomnia is a side effect of the drug I take daily to try and keep cancer from coming back).

Breast cancer does not dominate my life anymore and I rarely visit the support sites I used to. This is good – I think…

Whoever you are – I wish you a blessed Christmas and New Year this year.

Link

Dear blog,

I feel that I’ve neglected you over the past weeks, and I apologise.

There’s been a few reasons. Probably the same ones you hear from almost everyone. You know? Busy at work. Busy at home. Busy studying.

But, there were a few other reasons too. Busy going to the movies. Busy going to dinners. Busy going to lunches. Busy entertaining at our home. Busy getting out for looong walks and enjoying nature. Busy trying to find happiness!

What I haven’t been busy with is very telling about where I am in this breast cancer survivorship path. I haven’t been busy going to doctor appointments. I haven’t had to visit any pathology collection centres or radiology centres. I haven’t had to fill a prescription (well, maybe just once recently).

I did manage to go and sit in on a survivors support group talk at my new cancer centre. It was on lymphodema and it just made me realise that my previous centre definitely didn’t address survivorship issues very well.

I do have a 3 monthly check-up coming up next week with my new oncologist. I’m not overly worried there’ll be anything to find. I have a couple of niggling pains that I am naturally paranoid about, so I guess we’ll need to get those checked. Statistics assure me they are likely nothing – but there’s always that niggling anxiety at the back of my brain…

Speaking of anxiety. I found an interesting article the other day in the New York Times, “Anxiety Lingers Long After Cancer”. It made me realise I am not alone. You may be interested in seeing it?

http://well.blogs.nytimes.com/2013/07/12/anxiety-lingers-long-after-cancer/?smid=tw-share

Anyway, must run. I’ve got some more living to do. The dog needs a walk I think!

❤ Jenn

caring for the survivors…

I’m a “survivor”. A cancer survivor. And my question is…

How well does your medical system look after survivors. The people, like you and I, who have actually been saved by the drugs, interventions and modern medicine?

As a breast cancer survivor I feel abandoned by my medical system. My ongoing health and the quality of life I have during my survival feels of no interest to my doctors and health system.

Take them in. Treat them. Then send ’em on their way. This is what our health sytem appears to be set up for.

But what about the residual effects from the cancer or the treatments? We have chemo plans and treatment plans. Where is the survival plan?

ASCO (the American Society of Clinical Oncologists) has a statement. They have recognised the need for ongoing support for those the medical system has fought so hard to save. Their statement can be found here: http://connection.asco.org/Magazine/Article/ID/3440/ASCO-Issues-Recommendations-for-Improving-Cancer-Survivor-Care.aspx

“Most patients still want to see their oncologists even after they have finished active treatment. Oncologists are well positioned to lead and develop a strategy for coordinating follow-up care with primary care providers,” said 2012-2013 ASCO President Sandra M. Swain, MD, FACP. “We can’t let these patients, who are living examples of the progress we have achieved in cancer, fall through the cracks. ASCO’s statement provides a roadmap for closing the gap in survivor care.”

Their recommendations are:

Promote patient-centered coordinated care through the use of shared-care models.

Increase adoption of quality improvement programs, such as QOPI®, which help physicians monitor and improve care for all survivors.

Expand research on long-term and late effects to develop the evidence base.

Strengthen the education of health care providers on survivorship care.

Educate and empower cancer survivors and their families to advocate for their unique needs.

As a recent breast cancer survivor in Australia I have seen none of this. I have not, so far, had a medical professional ask me “How are you?” or “How are you coping?”. And, I am desperate for someone to ask, since I feel so lost in my survivorship.

I have recently changed to a new doctor. At my next appointment I will be asking for a plan. For some help with working this all out. For help with trying to address and resolve the residual effects of the drugs and treatments.

If you are a survivor, how have you found the follow-up from your medical professionals, team and system?

❤ Jenn

breaking up with my oncologist…

One thing that has been obvious for quite a while now is that my oncologist and I do not have a great rapport. Our personalities just don’t really “gel” which was never more obvious than the appointment a few months ago where she actually told me I was “rocking the lesbian look” with my short hair. If I was a lesbian it would be no problem, but I’m not, and the comment seemed insensitive and still brings me to tears remembering it.

The main problem though, has been that I am very much into research (funnily enough, since I work in cancer clinical research…) and throughout my experience with breast cancer I have spent considerable time educating myself on breast cancer and keeping up with the latest news and research.

My oncologist didn’t seem that interested in recent research findings and dismissed quite a number of my questions without adequate explanation and I felt that my treatment and particularly my ongoing follow-up was just based on “what we do and have always done” not on what information is actually out there NOW in the medical world of breast cancer. I get the feeling I was supposed to make myself into “a round peg to fit in the round hole”. Really…

So, since I still need to see an oncologist every 3 months for the next 5 years (I’m on a clinical trial for women with early stage breast cancer) this relationship is really important and I need to be seeing someone who builds me up and sends me away from appointments feeling informed, listened to and looked after.

Today I had a first appointment with a new oncologist at a different hospital. One that is much closer to where we live instead of where I work. This is good because if this breast cancer comes back at some point I will probably give up work to deal with it rather than trying to struggle through as I did this past year.

The new oncologist was everything I wanted and need. I came away from my appointment feeling like I had just had a great “first date” or won the lottery.

He asked me questions and seemed determined to shape my follow-up strategy based on ME (well, he at least made me think that). He sent me away feeling more informed after getting answers to questions that I had not had adequately answered previously. And, he has proactively asked me to have a couple of follow-up tests in a few months that will give us a clearer picture of where I stand in regards the ongoing hormonal tablets I need to take for at least the next 5 years.

If, by some horrible chance, this breast cancer comes back one day this guy is definitely the person that I want guiding me through my options, so why did I not make this change sooner?

The answer to that question is quite frightening to me in hindsight.

I have realised that despite my experience in the cancer “industry”, even I was caught up in some old fashioned attitude that “doctor always knows best” and also caught up in the fear that if I pointed out my dissatisfaction I would not be treated the right way. In other words, I spent quite some considerable number of months ACTUALLY TRYING TO BECOME that round peg to fit in the round hole even though I felt more like a complicated trapezium shaped peg. What I should have done, and what I hope I have now done, is find a complicated trapezium hole that is just perfect for me!

Are you caught up in a medical relationship that is not working for you? Were you brave enough to move on and find someone more suited to your “shape”?

I am so happy that I have now done this…

french toast and and a glass half full…


Of french toast and a glass half full…

Ahhh. Saturday morning french toast. The best of breakfasts – especially if made with Il Pandoro cake and drizzled with organic maple syrup.

Makes me wonder how pure maple syrup could possibly NOT be organic though? Does anyone know the answer to this? I suppose I could look it up but I’m tucked snuggly back in bed and can’t be bothered taxing my brain by using a search engine…

Anyway! Enough of sharing our food and on to more “serious” matters…

This week I had scans. A CT scan and a whole body bone scan. These will be annual tests for me. Always at the beginning of January, which I have come to realise means that my New Year will, for the next five years, be sprinkled not so much with confetti or ticker tape (does that still exist?) but with anxiety and apprehension.

It may surprise you that most women/men who have been through early stage breast cancer treatment don’t get scans regularly as part of follow up? Our first world medical system decrees that people who’ve had cancer don’t need the regular nuclear bombardment from scans and should only be scanned if or when they go to a doctor with suspicious pain (liver, bones, brain, lungs) or swelling (local recurrance, bones, liver) or fainting (brain) or… Well, you get the idea…

I do get scanned annually for the next 5 years because I signed up to a research study where they want to find out if/when the cancer comes back.

With my research directed mind this seemed like a good idea. Which brings me to my “glass half full”. You all know the saying “glass half full”? The theory that people have personalities where they either see the positives in a situation or they see the negatives.

I used to be a positive person. You tell me the petrol tank is half empty and I tell you it’s half full. You tell me we are low on cash this month and I say “but we still have enough for a cup of coffee”.

Breast cancer has cost me that positivity. It has changed me. The person I used to be. The bubbly, glass half full, woman seems to have disappeared and in her/my place is a woman whose personality I barely recognise as my own. A woman who, when told that my scans were all CLEAR (unremarkable, no indications of metastatic disease) had the first thought…

But, what about next year…

What is metastatic breast cancer…

Tomorrow I have a bone scan and a CT scan scheduled which means a whole day off work. These scans will be an annual event for at least the next 5 years and they are weighing heavily on my psyche…

Why? Because these are to check if any breast cancer has turned up somewhere in my body which would mean I had metastatic breast cancer. If that happens I would have to consider facing chemotherapy and drugs for the rest of my life.

Don’t know what metastatic cancer is? Here’s a great article explaining it:

http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/2009