Category Archives: treatment

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

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our medical choices aren’t always painless…

Can I have a bit of a whine?

This past week I had a revision surgery following my bilateral mastectomy and free TRAM reconstruction last September. This surgery involved reopening the incisions on both breasts and reducing the size of my reconstructed breasts and “lifting” them.

Surgery went well and the recovery is going well too. The big bandages all came off on Monday during a visit to the plastic surgeon’s office, and the stitches will be coming out on Thursday.

I am off work until at least Thursday after the stitches come out. Most likely I will go back next Monday because while I start my days feeling great things go downhill by late afternoon and I am reaching for the pain tablets. My job requires me to be “on the ball” and my brain is a bit scattered this week after the general anaesthetic. My fourth general in the 16 months since the whole breast cancer experience started!

Today Angelina Jolie made public her BRCA positive status and her decision to have a prophylactic bilateral mastectomy and reconstruction. Her piece in The New York Times is brilliant. See it here: http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html

Angelina’s choice in removing her breasts is a major step towards showing women that they have been blinded by the pink ribbons. Women on Twitter are already asking “why would she do this when breast cancer is so curable?”.

I have been answering any of these messages that I see tagged with #breastcancer. I have been telling women that they have been blinded to the truth about breast cancer. It is NOT really that curable. Early detection does not equal cure. Researchers have a long long way still to go until we can truly say that breast cancer at any stage is curable.

Got that message now everyone? I thank Angelina for her openness!

Now to get to the whinge…

Angelina Jolie, while helping publicise the reality of the decision, brushed over the reality of the process. She said “Two weeks later I had the major surgery, where the breast tissue is removed and temporary fillers are put in place. The operation can take eight hours. You wake up with drain tubes and expanders in your breasts. It does feel like a scene out of a science-fiction film. But days after surgery you can be back to a normal life.”

Days? How many days? She made it sound so easy!

Maybe it was easy for her. She’s fit and has the best help at hand. How many nannies have been reported? What does “getting back to work” really mean in her life?

Hmmm, I think I’m due for another pain tablet…

the never ending…

“active” treatment after my early stage breast cancer experience is over. I’m trying to get on with life. Back into my work (I’m a cancer clinical trial coordinator), my study (working my way slowly through a science degree) and the rest of my life.

THEORETICALLY all I am doing now is taking a Tamoxifen tablet everyday for the next 5 years, or 10 years if you follow the latest research.

But, throwing theory aside is what I want to do today…

The REALITY is that I am not only taking the Tamoxifen, with its accompanying side effects that I’ll tell you about another time, but I’m doing so much more. Today I…

1. Took a vitamin D tablet – may help strengthen bones and prevent metastatic disease.

2. Took a curcumin tablet – may help prevent metastatic disease.

3. Ate some walnuts because, you guessed it – may help prevent metastatic disease.

4. Included brocolli with our veges at dinner – may help prevent metastic disease.

5. Drank 2 cups of coffee – because recent research showed that women who drank 2 cups per day are less likely to develop metastatic breast cancer.

This is why todays post is called “never ending”. This experience is still dominating my life, and the choices I make everyday. This experience certainly appears never ending.

And, spare a thought for the women out there that already have metastatic breast cancer, or who go on to develop it. For them the experience is truly NEVER ENDING.

This past week, one of our Australian “sisters”, Angela, died of breast cancer.

I did not know her in person, and only knew her online (do visit the http://www.breastcancer.org community boards if you have breast cancer, or are supporting someone with breast cancer) very briefly. During that brief time she made an impact on many of us.

I hope that I do not join the number of women with metastatic, grade 4, breast cancer but the reality is that I can’t be anything but aware that it could easily be me, even with all this brocolli! After all, life itself is not never ending for any of us…

In the meantime, I will continue to throw brocolli in every meal, and eat walnuts everyday. And I will continue to admire those amazing women, like Angela, shining a light before many. Showing other women how to move through the experience of metastatic breast cancer with grace and bravery in the face of disaster.

❤ Jenn

with a little help from my friends…

I am back at work this week and missing the beach views we had from our holiday apartment. The current view from my desk is not quite so inspiring…

Anyway, I really wanted to broach the subject of support for those (me!) going through a cancer treatment experience. Over the past year and a bit I have discovered that if you visit any cancer support group, be it online or face-to-face, you will find that pretty much everyone has a story to tell of those that weren’t there for them during their cancer treatments. And, shockingly, the person that deserts the cancer patient is almost universally not just an acquaintance but someone VERY close to them.

I had wonderful support during my cancer treatment period (which, by the way, takes one step closer to being finished with my last Herceptin treatment being this coming Friday!) from many friends and family members. But, just like so many others I had some who just disappeared.

I’d like to be able to say that it was okay that this happened. But, you know, I just don’t think it is okay. The disappearance of people from my life (friends and family) who I had thought would stick by me in times of hardship hurt like hell. There’s no way I can stick a big pink ribbon bandaid over the emotional wounds and make it better.

Leaving someone to cope without your support during cancer treatment is not a way of “not bothering” them. It is a way to show them how little you actually care…

While I am deeply saddened by the desertions and the loss of friendships, I can say that for everyone one person that disappeared there were many who stepped forward and to those people I say THANK YOU. Every email, phone-call, comment on Facebook, Twitter or breastcancer.org was hugely appreciated. Every meal delivered, bunch of flowers, card, vacuuming of the house, cleaning of the bathrooms was a blessing.

The only way I got through this past year was with a little help from my friends…

Cancer takes away much from the person living with it. It forces our patients to change, to accommodate it and its therapies. Because of this, I have a deep respect for maintaining the ability of our patients to choose. In our mission to provide comfort and hope, we must accept the autonomy of patients and the informed choices our patients make, without judgment.

Dr Don Dixon:  http://www.kevinmd.com/blog/2012/09/evidence-oncologists-dictate-treatment.html

During the past year since my breast cancer diagnosis I have read a lot of articles about cancer and treatments. As a clinical trial coordinator I used to do that anyway, it’s just that this past year has made it more personal.

One on-line article, written by Dr Don Dizon and quoted above, really struck me and I shared it with my Facebook friends back in mid-2012. I’d like to share my thoughts on this with you.

Dr Dizon related the story of one of his patients who refused a recommended treatment because she was not willing to suffer the expected side effects that would mean giving up her beloved stiletto heeled shoes. At first he is shocked by her decision and then he accepted it and went on to offer her alternative treatments.

This message means a lot to me. Just because a treatment is available does not mean that you have to choose it. In fact, I did exactly this with one of my recommended treatments for my cancer. I was not comfortable with the potential long-term side effects of the recommended radiotherapy. Despite the assurances of the radiation oncologist that in her opinion the benefits outweighed the risks, that was not how I saw it. In fact, I “quit” radiotherapy (should never have started it…) and moved ahead with a bilateral mastectomy and reconstruction as an alternative.

Both radiotherapy and the mastectomy option gave me the same outcome – lowered likelihood of breast cancer recurring in my breasts. It’s just that one of the options was much more acceptable to ME. I have no regrets!

On my on-line cancer support forums I sometimes see women popping in after a visit to their oncologist and asking for input from other forum members on whether they should follow their oncologist’s advice or not. More frequently though, what I see are messages from women who are following the recommendations and are really unhappy. They seem to have no concept that they could just say “NO”. They could just ask “What else have you got?”.

Our modern westernised medical system channels us into treatment for conditions and illnesses just as if we were chugging through a factory assembly line. We have become un-attached to the raw realities of life from birth to death. We have become accepting of this regimented approach to our own life.

Next time you go to a doctor and they offer you a treatment try asking “What else could I do?” or “What could I do instead?” or “Are there any alternatives?”.

So back in December 2011 I had to figure out how to break the cancer news to my “world”. What better place than Facebook hey?

Reading back over these statuses just makes me amazed at how cheerful and upbeat I seemed to be. No outward sign to the world of the devastation this was wreaking. Nothing to indicate that I came home from that first surgery and sobbed on our wardrobe floor for an hour…

And see! I thought it would all be OVER by February. Hah! Visiting the chemo suite won’t be over until February this year. I will be taking Tamoxifen until 2017, and I still need more surgery to finish off my new breasts. I was so naive.

THE FIRST NEWS

THE FIRST NEWS

DECEMBER 7 2011

“Dear all,

Sitting down? Comfortable?

GOOD NEWS: my surgeon is lovely and I like her. She was receptive to my “clinical researcher” questions and there was some intelligent discussion about hazard ratios and outcome statistics. Tumour is small and because of where it is she felt strongly that a wide excision (lumpectomy) was my best option. This means that surgery on Friday should be relatively simple and I probably won’t even stay overnight in tne hospital. I’m on track to be back at work on schedule and may even go back a week earlier (I LOVE MY JOB!)

THE BAD NEWS: My tumour receptor status came back this morning and the news on this is not so good. I am ER+ PR+ and Her2+(3+). The first two are good. The last one makes it BAD. This takes my 5yr survival down from 93% to 77% immediately and the news could be worse if this thing has made it through my lymph nodes to other parts of my body, which we don’t know yet.

WHAT’S NEXT?
Surgery Friday. Follow-up clinic next Thursday when I will find out if this has made it to my lymph nodes. After that I will have appts in the next few weeks with a rad onc and the chemo onc, because I will need both. They will find out if I have cancer spread to anywhere else…

WHAT DOES THIS MEAN IN THE NEXT FEW MONTHS?
I will be back at work in the new year 🙂 I will start chemo and have been assured by the wonderful breast specialist nurse today that MANY MANY women undergoing chemo continue to work successfully. I may need to work some days at home though and I may need a few days off. I was very concerned about this because in my job I see the instances of problems, not the many many people with no problems or side-effects.

I will lose my hair. Tony just gave me my Christmas present early because of this. He bought me a GHD hair straightener :-). I’ll use it a lot in the next few weeks 🙂 Then I will worship it from afar for 6 months.

Jenn

PS (if you are still with me) I’m tired. Please do plan on coming and giving me a hug next week, but please don’t everyone phone this week as I am out having prep stuff done. And, DON’T use the word sad around me. Sad is for funerals and I’m a fair way off one of those right now :-)”