4 February 2013

Bucking the trend

Occasionally I come across a woman who goes "whoa, let me off this crazy roller coaster, I ain't doing it no more!".  The "it" I'm referring to is the conventional treatment for breast cancer - it goes something like this ... diagnosis - shock - horror - tears - fear - anger - why me - surgery - chemo - radio - hormones for five years - sometimes followed by ... what now - am I ok - fear - regular screening and hopefully eventually, the new normal.  Every diagnosis, every treatment and every recovery is different, it's all so individual and the timeline for all this varies widely for every woman.  For some the chemo comes first, then surgery, then radiation, then hormones (but I suspect all the emotional aspects are there whatever treatment path is followed).  Then there's the amount of surgery ... lumpectomy, mastectomy, double mastectomy, reconstruction, no reconstruction, type of reconstruction.  Then of course there's the lymph node removal.  All of this is exhausting both physically and mentally.  And it can be a time of finding out who your real friends are (sometimes that can be really surprising, people you don't expect step up for you and some fall away).  This is the type of journey I see most in my clinic.

But there are a minority of others who either decide part way through or right from the start that the route of conventional treatment is not for them.  What they find themselves doing is fighting one battle with cancer and fighting another battle with the medicos.

I have two ladies walking this path at the moment, one who went the chemo path against her better judgement and decided to stop treatment and the other who chose from the start to do things more naturally.  Let me point out here that both of these ladies have seen the oncologists and surgeons and various other health providers, they are not doing it on their own and it is vital that if you make this decision that you continue to be medically supervised.

J had a lumpectomy followed by lymph node dissection, so all her nodes were taken from her armpit. No cancer was found in any of the nodes which was a blessing.  Since the surgery she has had fluid collecting in the breast tissue and arm and she wears a compression sleeve and has regular lymphatic drainage with me.  Right from the start she didn't want the chemo/radiation/hormone therapy that was being suggested for her.  But she decided to start with the chemo and see how she went, setting the intention that it would feel like a hangover.  And it did, most of the time.  She started meditating, setting goals, eating better and surrounding herself with a support team to get her through the ordeal of chemo.  But she found herself getting more and more upset and feeling powerless.  After consulting with two holistic doctors and undergoing tests she decided to stop the chemo and focus on getting herself stronger.  She has also decided not to have the radio or hormones.  Her attitude is that "she had cancer, she is now cancer free".  All cancerous tissue was removed from her body, she had a clear margin and her nodes were clear.  She continues to see her oncologist and has regular follow up tests, but is feeling much more in control of her wellness.

H was a different story.  When I first met her she had a lump in one breast but had declined to have it biopsied, choosing to modify her diet and lifestyle.  I saw her only once and was concerned because while I understand not wanting to jump on the roller coaster of conventional cancer treatment, I felt it was vital for her to have a biopsy. I didn't hear from her for three and a half months.  I was a little nervous when she came in to see me again and asked cautiously what was going on in her body and to my relief she replied that she had had the lump biopsied.  Unfortunately it was cancer.  They suggested a lumpectomy but she chose to have a mastectomy so as to get a very clear margin, thus reducing the need for further treatment.  She underwent a reconstruction at the time of surgery.

ImageBreast reconstruction. Photo courtesy of Perfect Scars. http://perfectscars.com

She also had an axillary clearance and one node was found to be cancerous.  Her recovery from surgery has been free from complications, no swelling, great movement.  She is sticking to her guns and not having chemo/radio/hormones.  But again, she's doing it under the supervision of a medical team and complementary therapists.  She will continue to have regular tests and follow up appointments.  She also takes the approach that she "had cancer and is now cancer free".

For both women one of the most important things was getting their support team together - people who would monitor them, advise and treat them as they need.  But ALWAYS under medical supervision.

The main point of this post is that you have choices in your journey through cancer.  For most it is comforting to know there is a system in place to manage treatment medically, it's a positive thing to know first I'll do this, then this, then this. It's ok to go with the flow and to be managed.  Some women feel they are not doing 'as well' as they cannot find it in themselves to make the choices, do the investigating. They want to be told what to do.  This has been proven to work.  For a few, it is important to realise that you can make the choice to do it differently, but it must be done in consultation with your medical team.

I'd like to thank Elizabeth, who gave of her time to  help me edit this entry today, without her, it wouldn't have been as insightful.  She also sent me this quote -"The important thing is that people understand that it's a process that has to be gone through, not a ghastly battle that you win or lose.' (Joanna Lumley)

0 comments on “Bucking the trend”

  1. Great post Lisa. I hope I never need to use this information for myself, but it is so good to be aware ... just in case. I will pass on to my friends also.

  2. This is a very insightful article, one of the most important thing in fighting cancer is making the right choices. Making the right choice entails you to consult your support group may it be the medical team or your family. I like what you are posting on your blog from now on I will be one of your avid followers.

  3. Informed choices are SO important. As a 6yr BC survivor myself,I have met so many women that due to the shock- horror- stress of the diagnosis that they only hear what they want to hear & often can make choices without all the facts.thats why having family or friends with you at appointments is so important.Even after surgery to remove all cancer. Adjuvunct treatment 'mops up ' any left cancer cells. It only takes one to regrow.The statistics that each medical professional gives is so important to evaluate & weigh up the risk & side effects vs reoccurance or life expectancy.Often hard decisions & ones you don't want to regret.Hair does grow back.I did the full works masectomy.chemo,baldness,radiation which gave me the best statistical chance of it not coming back.But it still a whole lot of luck & every body's body& diagnosis is different which we have to respect.My heart aches when someone comes to suppport group with secondaries after rejecting treatment the first time around.It could have happened anyway & you do hear some incredibly amazing stories of natural therapies also. No regrets. I ♥ remedial & lymphatic massage. Makes my puffy arm feel so much better.Don't forget to do monthly self breast exams & don't be scared to tell your doctor if anything changes.Be scared not to check.90% survival rate if find BC early.

    1. Thanks so much for commenting. Choice is the thing. Glad you have remedial massage and lymphatic drainage in your life - makes all the difference. I'm sure you do a great job helping others who are just starting out on their journey through BC at the support group, always good to have someone to talk to who's been through it.

  4. the hormone thing you are referring to is only offered to women who have ER+ breast cancer & is actually the withdrawal or blocking of estrogen, by either radiation to or removal of ovaries for premenopausal women, Selective Estrogen Receptor Modulators Tamoxifen - which blocks any estrogen from getting to receptors on cancer cells, or Aromatase Inhibitors, Arimidex, Aromason, Femara which stop women passed menopause from producing any estrogen from other places in their bodies.
    It is not at all pleasant living on these treatments, as estrogen plays a huge part in much of the body functions, especially bone density, brain and heart health.

    1. Hi Marian, thank you for such a thorough response - yes, she is ER+. I can't imagine how hard it is to be on hormone therapy, I do see quite a few ladies in my clinic who are struggling with the effects. Hopefully research will provide us with an easier way to deal with hormone positive cancers in the very near future. Good luck.

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