In September of 2011 I had my third breast cancer removed. In November of 2014 I learned I have a fourth breast cancer. As with each of the others, this one is different in character from the previous breast cancers I’ve had. That means it’s another “primary” breast cancer and not a “recurrence” or a “metastasis”. For reasons I don’t understand, my body makes different kinds of breast cancers. Over the years, I’ve come to learn about each one … not as well as a medical student, but enough to be reasonably educated about my treatment options and decisions.
My initial response to this news (which I got late yesterday afternoon) could be characterized as “numb”, or maybe I’m just used to it by now. I’m not frightened by it. I’m not worried or concerned about it. Based on what my breast cancer surgeon (Rebecca) told me, the tumor size is less than 1 cm (Stage 1), and it’s not aggressive. As breast cancer tumors go, it’s not much to worry about.
But here’s the thing: this breast has now had three breast cancers and with the upcoming one, it will have had three surgeries (lumpectomies) to remove the tumors. It’s also been through radiation (first breast cancer). I’m living proof that radiation doesn’t prevent further breast cancer and skin that’s been irradiated doesn’t heal as well as normal (un-radiated) skin, so my post-surgical recovery is less than predictable. I’m hoping for the best, of course. I always do.
The above is so matter-of-fact I’d have skipped it. But in case you happen to be reading this at a time when you’re trying to decide whether to go through breast radiation, I decided to give it a mention. My best advice: learn all you can about it and (most importantly) listen to your body. My experience with radiation didn’t work out all that well for me but that doesn’t mean it won’t work for you. Do your own homework, then give a healthy dose of credence to your gut instinct.
My homework now is to try to figure out what to do about my body’s inclination to make breast cancers. Since my last “bout” in 2011 I’ve been on supplements designed to keep breast cancer away. So this news will be upsetting to my naturopathic doctor who has been my guide on supplements and inspiration for alternative treatments. I can’t say I’ve been the idyllic patient (I drink too much wine) but I haven’t been entirely irresponsible either. In truth, it doesn’t matter: the approach didn’t work. So now what? I’m sure my Naturopathic Doctor will be wondering the same thing. It’s a set-back, but I already know there’s no sure cure. How can I blame anyone for doing their best to help and it didn’t work? I can’t.
Other than the decision to go through radiation in 2001 (a decision I regret) I’ve refused all other “standard care” other than lumpectomies. That means I’ve turned down chemotherapy, Tamoxifen, Arimidex, and the like. Why? The side-effects can seriously impact quality of life even after you stop taking the drugs. I know this because I’ve searched the web and found too many women posting their stories about the experiences they’ve had with these drugs, including lingering and painful side effects for years after they’ve stopped taking them. Without consulting their doctor, many have taken themselves off the drugs. All too often I’ve read: “A life like this isn’t worth living”.
A rational reader would understandably wonder why I’d assume I’d have these negative side-effects since not all patients do. I have only one answer for that: when it comes to my health, if something rare can happen it’s going to happen to me. If you were to put me on a bell curve with other breast cancer patients, I am at the far edges of the curve: no where near the middle. Thus, even a small chance of life-long joint pain, or debilitating fatigue, isn’t worth the risk to me.
So here I go again. I’ll research what I can and listen to my body. One problem right off the bat: the medical community doesn’t follow women who refuse post-surgical care. Standard western medicine doesn’t know how many breast cancer patients have survived or died as a result of refusing chemotherapy, radiation, drugs, and/or surgery. They have little information about, or interest in, what patients are doing for themselves. That means they don’t have all the relevant information when they present findings of their clinical trials. Since they don’t track, or include, information about those of us who don’t buy their wares, their information is incomplete. More accurately: their science is incomplete.
I’m left with doing Google searches on terms for patients like me which go something like this: “65 year old with a history of four primary breast cancers”. There are many variations for this kind of search (I tried all I could think of when I was at three; researching for four won’t be easier). With luck, I might find a chat room where there’ll be a woman or two with a history similar to mine. For the most part though, this is a road I’ll need to pave for myself. So far, I’m okay with that.
Breast Cancer Redux 
Hi Robin… I’m sorry you’ve had to go through this again for the 4th time, when you wrote this in Nov 2014 I was having my second surgery to remove the margins. 22mm Triple Negative Breast cancer left undiagnosed for 4 months (no lymph node involved), operated on first time 6 months after finding the lump. Like yourself, I want to know what causes breast cancer and how to stop a reoccurrence. Mainstream medicine want to find a cure? sure they do, think of all the oncologists, pharmaceutical companies, doctors, nurses who would be out of a job. I was angry that I listened to my body and begged to be seen by a specialist here in the UK, (you have to go through your GP’s referral to a hospital, then the breast surgeon determines how quickly you are seen). Because mine started as a pain and then a swelling, then a lump, both GP and Surgeon assumed it couldn’t possibly be cancer and I waited 13 weeks to be seen in hospital, where I was told there and then ‘you’ve got cancer’. ‘You’ll need to have chemotherapy and radiation. I had already decided before diagnosis that I would not be undertaking chemo, as the side effects, chance of a spread and the fact that everyone I spoke to said they wouldn’t go through it again or their loved one died whilst undertaking chemo. I listened to my body from the start and will continue to do so. Started Radiotherapy and got a sore throat, told the radiologist, its nothing to do with Radiotherapy… googled it and many women have sore throats because of radiotherapy. Then got an infection in my breast half way through treatment… again was passed off my specialist, I wanted to stop the treatment there and then but was persuaded to finish the 23 sessions, which I now regret as I had since I finished 6th March terrible fatigue, body aches and pains and was told this had nothing to do with the radiotherapy. I just don’t trust Doctors anymore, when they say this and many women have the same symptoms as I have had. If I too had a reoccurrence I would not go through any “treatment” given by the “experts”. Facing your own mortality at 41 (when diagnosed) has changed my life completely and I am still sat in the rubble of my lightening struck tower nearly a year after diagnosis wondering if I have a future due to the grim prognosis of TNBC.
Hi Kerry,
Thanks so much for sharing your experience, which is heart-breaking, but (silver lining) despite it, you’ve come through it with a strong sense of what your body needs and that’s a powerful thing to know as you move forward.
From what you’ve written, you were knocked over in a spiritual sense (or psychological, or however you perceive your sense of self), and it’s important for you to handle those negatives because your body picks up on them (thoughts affect cellular behavior so the happier/healthier your thoughts, the better).
Changes in lifestyle and diet are the two most frequent approaches I’ve seen for breast cancer survivors who’ve “gone rogue”. But to get you started, you might want to “reset” the bacteria in your body (your gut) to help handle the effects of radiation and the anaesthesia / pain killer and/or antibiotics you may have been given before and after surgery. There are other steps you can take to help with radiation exposure as well: http://www.globalhealingcenter.com/natural-health/natural-remedies-for-radiation-exposure.
The above link mentions iodine supplementation, which is something many women have turned to (see http://www.breastcancerchoices.org). For diet, the Mediterranean diet is strongly recommended, and a good book on that is “The Gut Balance Revolution” by Gerard Mullin, MD. If that’s not available yet in the UK, let me know.
You have an excellent chance of living to a ripe old age, and having had breast cancer can serve as a silver lining to tending to the priorities that really matter to you, as well as your physical well-being. Do your best to overcome the dis-ease you’ve had to experience. And feel free to contact me anytime, either through this blog or at my email address: robinstamm.nh@gmail.com. My very best to you.
Thank you for your story! A complete tonic!
Finding a post about getting breast cancer multiple times, 2 or 3 or 4 times is near impossible.
In 2022, I had my third local breast cancer lumpectomy. 2.2 cm solid papillary carcinoma ( SPC) with a 5 mm invasive ductal carcinoma component. SPC occurs in < 1% of Breast cancer diagnosis.
This right breast has had a total of 2 biopsies, 2 lumpectomies, whole breast radiation.
I am slowly healing but a seroma occurred to delay my healing. Still hoping it absorbs – it has been 2 months already.
History:
In 2009, at 51 yrs,I had bilateral breast cancer ( count as 2 breast cancers at the same time). Had 2 lumpectomies, bilateral whole breast radiation, 2 right sentinel node biopsy, neg lymph node involved, then 5 years on Tamoxifen.
Back to the present:
In 2022, 13 years later, I am 64 yrs, a third breast cancer appeared on a mammogram. Another primary, completely different than the other 2.
They did an ultrasound biopsy, Bone scan w nuclear marker, CT, ( cancer anywhere, Inc lymph node) genetic testing ( neg for breast cancer or any other cancer gene )
I have had another lumpectomy, no lymph’s- all local removed w 3 mm clear margins.
Now I am struggling with proposed adjuvant therapy. I am a candidate for re- irradiation. My skin has little to no fibrosis from first radiation in 2009.
History of adjuvant side effects: radiation & Tamoxiifen
I had a terrible time recovering from radiation- 7 weeks, 50 gys with 10 gy boost to each side, 60 gy total- I put cream on every hour to wash cream off before treatment, cooking pillows I made myself, needed pain killers by day 3 – doc did not believe I had pain- it was a nightmare. Then Tam was chemical induced menopause in one week. Hot flashes, 30 lb weight gain, mood swings – ugh- so now I learn that lowering Estrogen cause insulin resistance- and a high probability of Type 2 diabetes. I tried an aromatase inhibitor for 3 mos Letrosole ( Femara
Then went back to Tam and stopped at 5 years due to higher incidence toxicités like uterine cancer.
My dilemma:
My docs want me to do both again- but an AI this time!
I struggle with all these assaults on my healthy body. My bone density scan is normal and good. Who wants to take a drug that cause 20% bone loss & daily joint pain! I am active, tennis player, big time gardener,
In my heart of hearts I want to say no more!!
In a quandary. Thanks to my seroma I can wait and decide.
Thank you!!!! For your story!! If you got this far on this long long post- bless you for listening. I will reply if you need support too. Christmas is coming. I will try to enjoy my life which is a blessing with 6 grandchildren!!! Thank the stars for my loving family.
Dear Kaye,
We all need to feel (really feel) that the decisions we make about breast cancer treatments are the best ones for our body and soul. My mantra has fully become “listen to your gut”. I’m 73 now and had another breast cancer after the last one posted on my blog. I’ll add that experience, as it left me in chronic pain across the chest wall because I had a double modified mastectomy and the surgeon pulled the cartilage too tight. That was in 2016. I’m honestly surprised I haven’t gotten another, but if I do I’m done with ANY treatment, including surgery. That’s the emotional/spiritual side of breast cancer for me: I had to come to terms with doing nothing more. I’m not suggesting you do what I do: I’m only urging you to listen to your gut (that little voice in your head). I honestly believe it’s your best guide. I hope you’re able to enjoy the holidays despite your current quandary. You’ll get to where you need to be when it’s time … I’m pretty sure of that. All my best — Robin
Dear Robin,
Thank you for your reply to my post.
So rough that you had another round. I am so sorry for your chronic pain. Especially being aware of the doctor involvement. Tough on the mind and spirit and body:(
I hope you can find ways for relief and peace.
So so true! We must be our own advocates- sometimes it feels like we get ‘boiler plate’ replies from our docs.
Us multiple bc gals are in mostly un-chartered territory. We must rely on our ‘gut instincts’ after all the data ( not much to find) and recs are reviewed.
Thanks for your encouragement in your post. I got through the holidays well.
Recommended by the ‘ tumor board’ at my hospital to do at least one treatment radiation or endocrine.
My month delay to start the Rads because the seroma cavity was too big ( presenting too much good tissue in the Rad field and unsafe for Re- irradiation) became a blessing ‘to pause’ in disguise.
I have been getting stronger with a physical therapist who is doing some pretty cool “ cording massage” – magically relieves me of pain from current surgery & from 13 years ago on the left too.
I chose endocrine, and so far so good. During this past month plus, I started it to see if I could tolerate it. Luckily I did not have the same response as I did to Letrozole. I am trying another AI. All okay.
Officially yesterday my radiologist and I cancelled Re-irradiation. Even she was relieved! It was great to get her honest response after “ I am on the fence” reply in Nov.
Such a relief. My whole body is happy. Listening to my cells 🙂
So the journey continues.
I will meet with a counselor specializing in oncology to help process the trauma of these past 6 months.
I met with one 13 years ago a few times a year to help me get past the mammogram visits.
It will help again to talk it out.
Warmest regards and less pain, Kaye
Dear Kaye,
Thank you for reading what is, in many ways, my “breast cancer journal”. I’m relieved you chose to cancel the re-irradiation … simply because radiation can create a mecca for new cancer cells. But mainly, I know you’re listening to your body and letting it be your guide. We’re agreed: we have little choice when we walk away from the full “standard-of-care”.
I am physically in some pain, but it’s not debilitating and, after awhile, I’ve gotten used to it. I do take a pain medication (Gabapentin) which I’m trying to keep to a minimum as I don’t feel it has a good long-term outcome (memory issues in particular).
You know where I am if you ever need to talk about a decision you’re facing. I wish you all the best.
Much peace to you,
Robin
Hi Robin,
I was on Gabapentin for a good long while after my first BC round 13 years ago,in 2010. I took it for nerve pain. My doc said it was the only medical nerve pain and I wouldn’t like it much.
And I did not like the side effects. It helped a bit to get me through the early stages of nerve damage and radiation healing. Another pain reliever, Tramadol really helped for awhile ( 3 mos). I really pushed to find a nerve pain alternative-It made me pretty dizzy and unable to drive, so it grounded me and my emotions seem to become mercurial. Ugh
Back in 2010 a year after 3 surgeries/ Sentinal Node biopsy/radiation/ taking tamoxifen – My big discovery was heated therapy pool and aqua exercises. It really began to alleviate my nerve pain and help me gain some muscle strength. I got off the GABA.
I got major nerve zings after this new ( & 3rd) lumpectomy surgery Sep 2022. I took GABA again this time for the first 3 mos after surgery. Worried to have the same experience, but it really got me over the tough nerve zings as my nerves began to wake up.
Another big discovery was physical therapy to my tight under arm lymphatic cords and getting cording massage. I am still 4 mos out, getting this cording massage to help regain range of motion. Look into it- she has said, PT’s don’t seem to spend much time massaging these cords from the breast, arm pit and down both arms. My need for nerve pain began to subside within weeks. I even stopped NSAIDs too.
Thank you for your offer to reach out.
Peace to you too, kindest wishes for well being. Kaye
Hi Kaye,
The Chiropractor I now see (who also offers PT) uses “Active Release Technique”, which resolved the pain of tendonitis within one session, so to me it’s a miracle. He also resolved a spasm in my hip flexor within about 1 month, after I’d spent 3 months with a different Chiropractor. This to say I’m very glad you’ve found someone who helps you. I do know a practitioner in Sarasota, FL who can break up scar tissue should you be in that area.
Seems you’re doing well. Nicely done!
All my best,
Robin