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Topic: My 4 Step Guide to Cancer Treatment

Forum: IDC (Invasive Ductal Carcinoma) — Just diagnosed, in treatment, or finished treatment for IDC.

Posted on: Jan 16, 2019 09:01AM - edited Jan 16, 2019 09:04AM by MZ1969

MZ1969 wrote:

In the midst of an exciting time of professional growth, I was diagnosed with stage 2 breast cancer following a routine mammogram. The journey has been quite the ride: terrifying, harrowing, at times beautiful, with breathtaking views of the peaks and valleys of what it means to be human.

A cancer diagnosis is challenging on every level of our experience: physically, emotionally, socially and spiritually. As I plowed through this onslaught, I've learned some important things.

Now that I've completed the acute part of cancer treatment, I can offer some thoughts that might make another woman's journey slightly more tolerable. I have been helped so much by this list-serve, I hope I can give back.

Self care is your utmost priority –

Rest, Rest and Rest. Let people take care of you. Accept the kindness of strangers, neighbors and friends. I was moved to tears many times by acts of generosity and understanding, small and large. These acts came in the form of prepared meals, a listening ear, warm hospitality and gifts. The shining halo of the vulnerability of disease is the love that comes your way. This love, often dormant and taken for granted, bursts through in this time of distress. The people in your life show their love, demonstrate it in myriad displays of kindness. Soak it in.

What you don't receive from others, get for yourself. If you have money, spend it. This is your rainy day. It is likely to be a finite period of time, and expecting (and hoping) for the transitory nature of it, helped me justify what felt like indulgence. My rainy day reserves went on subscribing to a family meal delivery plan as I went through chemo, on massages to relax before procedures, but mostly on complementary medicine, specifically a cancer nutritionist, acupuncturist and a consultation with an alternative cancer doctor. There is more on that below, it is money well spent. If money is short, there is ample, credible information online and in books; harness your BFF to organize a community meal plan for you; and many complementary medicine and psychotherapy training institutes offer low fee treatments.

I remember months of overwhelming work stress piled on top of the usual parenting and housekeeping. There were days when I realized: I didn't drink any water today (but I did have lots of coffee); I didn't have not one vegetable or piece of fruit (but I did have a chocolate croissant); and when was the last time I exercised (I did sprint up the subway stairs to catch the train)? After cancer, taking care of myself may be a matter of life and death.

Complementary medicine works -

I am profoundly grateful for my access to high quality, mainstream Western healthcare, and marveled at its gifts – the team of doctors hovering over me in the operating room, experts in their fields, all there to just to take care of me; the wonder of plastics in the administering of chemo, plastics that I've previously viewed as mostly evil. The overwhelming experience I had with my doctors, nurses, technicians and support staff is that they have been extremely kind and caring, and are truly coming to their work with a genuine desire to help. However, they only know what they know and there is a lot they don't know; and for whatever reason, they don't think some things are worth sharing. On the topic of complementary interventions for cancer care and prevention, the book Anti-Cancer by David Servan Schreiber is a must read.

It was important for me to trust my doctors, and I do in that I trust they mean well and want the best for me. But I wanted more than they had to offer. My supplement regimen, prescribed by my nutritionist (a nutritionist who specializes in cancer and understands the cancer treatment/supplement interactions www.nutritional-solutions.net), increased my white blood cell counts and prevented me from having to take yet another medication (Neulasta) that would cause even more discomfort, painful side effects and potential long term damage. My acupuncturist helped tremendously with my digestion, sleep, mood and ability to cope. The alternative cancer doctor revealed that a daily dose of baby aspirin may decrease my chance of recurrence by 30-50%. When I told an oncologist about the aspirin, she said: "You know, that research is very controversial." I'll take controversial if it might help get me past 55.

You must be informed and be your own advocate –

Attack the internet, library and bookstores with all you've got. Have coffee with women who have gone through breast cancer treatment, hear their stories, ask them what they've learned, for resources, information, how they are doing, and what they would do differently if anything. Don't be shy, we want to talk and share, we want to help you as you are initiated to this 'reluctant sisterhood' (my friend Victoria's term). This List serve is an incredible resource, but beware of getting sucked into negativity.

I tried to be as informed as possible every step of the way. In choosing reconstruction post lumpectomy, I opted for a bilateral breast reduction, a less popular option. The surgery was one of the silver linings of the ordeal - an insurance paid, sort of mandatory, boob job. I asked for the accelerated radiation regimen, which my radiation oncologist obliged. There were women in the waiting room who have never heard of it and didn't know to ask, and were therefore subjected to 6 or 10 weeks of radiation instead of 3-4 weeks.

Perhaps most dramatically, I cut my CMF chemo regimen in half, from 8 to 4 treatments, based on studies conducted in Europe. When I discussed this with my oncologist, and after pressing her for her opinion, she said: "I don't know how else to say this, except that the standard treatment in the US is 8 treatments; whatever you decide, you have my blessings and we will move forward together to the next step." In other words, she was not in a position to give me an opinion other than the standard treatment, but she also didn't oppose it or counter it. I am confident in the soundness of the science on which I based this decision. Here is the link to the study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2375405/

I am now facing the decision re hormonal therapy. I am researching it and my inclination is to say no. The risks outweigh the benefits. I am concerned for my brain and my joints. My PR- status puts me in a category in which I will benefit less from hormonal therapy. My approach is to be strict with lifestyle and supplements.

An opportunity for growth.

On some websites you will read "cancer is a gift." Tell that to the stage IV cancer patient, or to the parent who lost a child to cancer. While that language can be off-putting, I think the message is: How did I get here? Why is this happening to me? What can I learn from this?

There is no easy answer for the why. Why do we die? Why do we get sick? We are all dying of course. It's more about: what can I do differently that could make my life better?

There is profound grief that comes with any cancer diagnosis. It is a terrible blow to our narcissism, to the suppression of our vulnerability and mortality that is necessary for day to day functioning. At times, I plunged to the depth of despair. With the pain of surgery and the sickness of chemo, there was the loss of the life I have known. On those days of despair I fell into self pity, into feeling victimized by my fate.

I crawled out of that hole each time as I counted my blessings. My sons, my husband, my home, my family, my friends, my work. I listed them in my mind and these lifted me.

And there is the deeper level of these questions: What is death? What is the point of all this suffering? These questions are spiritual, existential. It is an opportunity to connect to the deeper meaning of things. To make sense of this life that is suddenly, blatantly, so precious and fragile.

Dx 5/18/2018, IDC, Right, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR-, HER2- (FISH) Surgery 6/21/2018 Lumpectomy: Right Radiation Therapy 8/22/2018 Whole-breast: Breast
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Mar 1, 2019 11:59AM UpstateNYer wrote:

Hello MZ 1969, what a beautiful and well written post. God bless you. Your experience and words of encouragement really helped to brighten my day. I will surely take into consideration your helpful tips and advice. I am recently diagnosed with IDC and so thankful it was caught "early". I am facing lumpectomy with IORT radiation to be done at the same time. I won't have to go through weeks of radiation this way. I am grateful for words of encouragement from others, but not afraid to say that I am really afraid. I never felt a lump and was overdue to a mammogram because of a prior bad experience. Oh well, live and learn. I will get through, as you are doing so beautifully.

Into every life a little rain must fall Dx 2/6/2019, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2- (FISH) Dx 2/8/2019, IDC, Right, <1cm, Stage IA, Grade 3, ER+/PR-, HER2- (FISH) Surgery 3/20/2019 Lumpectomy: Right Surgery 4/2/2019 Lumpectomy: Right Chemotherapy 5/7/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 8/6/2019 Lumpectomy Hormonal Therapy 9/5/2019 Arimidex (anastrozole) Radiation Therapy 9/10/2019
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Mar 10, 2019 07:00PM Luckybambinas wrote:

hello MZ1969...

I am from the UK and has been trying to get as much information, inspiration, and support from different sites and forums until I found your post. Being diagnosed with TNBC in Oct last year has had a profound effect not only to myself but those people around me. It is an eye opener and you are right in that it opens a lot of doors to those kindness and generosity that you may not have thought possible!

I have worked all of my young adult life, got married early, have kids, juggling motherhood and a stresssful career. Since my diagnosis at 40 years of age I knew in my heart of hearts that I am likely to get this breast ca as now 4th woman on the maternal side diagnosed! I do feel a bit letdown by the NHS because I requested for a genetic testing 5 years ago following a right breast lumpectomy for a fibroadenoma however, I was deemed low risk at that time! I was vigilant with breast self exam and it was only september last year that my worse nightmare came back with a vengeance!

I have been lucky so far that having completed my 6 cycles of chemotherapy this month apart from being admitted in hospital a week after my first cycle due to neutropenic sepsis, I have been at home since offwork of course and just trying to keep my self as healthy (mentally and physically) as I can. Having said that tho, i continue to have bouts of anxiety, panic attacks, frustrations, and self pity.

I'm due for a lumpectomy in April with lymph node removal and will have a 4 week rest before starting with radiotherapy. Rx may be put on hold tho should my post lumpectomy biopsy still shows trace of cancer cells which to me is going to be a big blow as I'm really just looking forward to getting on with my life and not to have to go through another chemo treatment. To me, I have done what I can to give myself a fighting chance of survival yet it just feels like a long slog! Anyways, I am really hoping that I will get a PCR and it is just going to be a waiting game for mastectomy and breast reconstruction within the year.

I hope that we will all get through this and will keep u posted in my journey. God bless!

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Mar 10, 2019 11:32PM Moderators wrote:

Welcome, luckybambinas! Thank you so much for sharing your story and perspective. So many can relate to everything you've described, and it's so helpful to know you're not alone. Best of luck with the rest of your treatment and with your upcoming surgery, we look forward to seeing you on the boards!

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Apr 4, 2019 11:38PM Margot62 wrote:

I can’t tell you how much this post means to me. Beautifully written, honest, full of wisdom.

I so very much needed this today.

Thank you

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May 9, 2019 11:17PM Palesa2018 wrote:

Beautiful post indeed. Thank you MZ1969. Just a reminder that self comes first. Since completing my treatment I feel like I'm back to the normal routine a bit too much, work and all.

Dx 6/7/2018, DCIS/IDC, Right, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 6/11/2018 Lymph node removal: Sentinel Surgery 7/8/2018 Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 8/8/2018 Hormonal Therapy 9/11/2018 Zoladex (goserelin) Radiation Therapy 9/15/2018 Whole-breast: Breast, Chest wall Hormonal Therapy 11/3/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 11, 2019 06:08PM Amyadipose wrote:

this helps more than you know, but likely you DO know!

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Dec 2, 2019 05:27PM Lvp84 wrote:

This lifted me big time, thank you

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