Beyond Breast Cancer - new Mayo Clinic book

I would love to know what they say about monitoring for recurrence. I am not sure of any ways to monitor, to tell the truth. Everyone I know with metastasis seemed to find out about it from a CT scan for something else! I am 9 years out and starting to feel that my risk is higher, not lower- which it is.

windyshores | @windyshores
I understand your anxiety about reoccurrence. I have 5 year recheck next week, and I always get nervous when having a recheck.

If worried about distance reoccurrence (cancer travel to different part body) , they suggest watching for changes in health. Especially problems related to bones, liver, lungs or brain.
- Persistent and worsening pain in joint / back
- Persistent cough / difficulty breathing
- Loss of appetite / weight loss without trying
- Severe headaches
- Seizures

When I look at list, those are all things that I would see a provider for, even if I had not had cancer.

Laurie

Thank you so much for sharing this new "survivorship" resource. I had a double mastectomy in December 2022, multi-focal DCIS in my left breast and small DCIS in my right, and am currently in year long chemo/targeted therapy treatment receiving Kadcyla, aka, TDM1, for an early stage 1A, HER2+, hormone negative tumor found in post surgical pathology since January of this year. I have less than 3 months to go until treatment end, having completed 13 of 17 rounds, and since there are no more mammograms for me, and HER2+, a marker for greater chance of recurrence and aggression, I imagine I will be managing anxiety of cancer's return against living presently and fully for some time. Dr Kathryn Ruddy, the co-author of this new book, is also my oncologist! I'm purchasing the Kindle version today. I'll need to thank her as well when I see her next.

Melanie

I received mine as well, and had to read it cover to cover immediately. Lol
What a nice resource, this can be one of those books that you go back to over and over again for information. No matter how you use it, it is a wonderful tool for all breast cancer survivors.

It's in my mail box!

@roch I am 9 years out and had double mastectomy. I am not really anxious so to speak, but it does sit on the back burner and affects how I think about the rest of my life to some degree (I am72).

My oncologist discharged me at 5 years. But risk with hormonal cancers goes up! No scans, no blood tests- that is the usual practice.

I have arthritis, several spinal fractures, kidney issues, neurological issues. migraines, and COPD. So how the heck am I supposed to be alerted to possible cancer? Pain is an everyday thing for many of us. I guess if there is a big change....

@windyshores
I was diagnosed 31 years ago, mastectomy and chemo. My oncologist always did cancer markers test once a year. I moved after 13 years but continued to get test another couple of years I think. I don’t know if that’s done nowadays.

And many thanks to the members of the Breast Cancer support group here on Mayo Clinic Connect who were interviewed for the publication of this book. Thank you for sharing your insights and experiences!

Which cancer marker tests did you use to monitor your ILC? Thank you!!

I hope they've included up to date diet advice. There's strong, growing literature (animal studies, case studies, and inference) from very respected researchers/clinicians in support of carefully managed intermittent fasting and keto diet to starve cancer of glucose/fructose. But it's important to do the keto carefully so as not to feed cancer w/ too much protein either. Unfortunately, a lot of oncologists (and even nutritionists in cancer centers, as I've found out) aren't familiar w/ literature.

I strongly believe every patient shoulddecide for herself (and himself) w/ their drs' input as to their treatment w/o absolutes pushed by docs or online, but it disappoints me to keep seeing certain diets pushed (mediterranean--lots of high glycemic pasta--or low fat) as if there's clear science behind them w/r/t cancer. Seyfried's paradigm-changing work on metabolism as the central common pathway for cancer (much more than genetics) shows great promise, particularly in combination w/ standard of care. The case studies they've demonstrated w/ glioblastoma in particular are astonishing. There's all this focus in the mainstream these days on how cancer feeds off of estrogen to the point wherein some women endure terrible, disabling side effects, but none on how cancer feeds off of glucose/fructose (and glutamine, though that's more difficult to get at).

I mean, who knew until recently that we evolved to process fructose as part of an upcoming winter hibernation strategy, such that it spikes insulin when in high concentrations, appetite, and fat storage. Makes sense, really, and the researchers working on this make the point that whole fruits have great nutritional and fiber value, but that we weren't meant to drink the juice of 20 apples or more at one sitting, however organic. We all know to avoid high fructose corn syrup, but glasses of OJ? I feel awful for giving juice to my kids, thinking it completely safe--it'll be seen in the future like I gave them cigarettes or something. 🙂

Something as simple as continuing on the same diet but keeping it to 6-10 hrs a day to give the liver a break was shown in a 2016 study w/ breast cancer to reduce recurrence in a dose-dependent matter. That's an adjuvant therapy that's free and has health benefits apart from cancer.