Canadians in British Columbia

just a quick PSA from your vegan boardie

any people going plant based, make sure you're taking your B12. It's the one supplement that you must do as a vegan.

For that matter, did you know that the recommendations are that ALL people over 50, regardless of dietary pattern supplement with B12?

NIH "As a result, the IOM recommends that adults older than 50 years obtain most of their vitamin B12 from vitamin supplements or fortified foods [5]." https://ods.od.nih.gov/factsheets/VitaminB12-Healt...

Healthlink BC "Adults older than 50 years: Older adults do not absorb naturally occurring vitamin B12 very well. Anyone over 50 years should get the recommended amount of vitamin B12 from fortified foods or a supplement that contains vitamin B12 (such as a multivitamin). "
https://www.healthlinkbc.ca/hlbc/files/healthyeati...

I don't have health or nutrition books to recommend but I check out the food lists on this website: https://foodforbreastcancer.com/

The book I'm reading now is Pema Chodron's When Things Fall Apart - Heart Advice for Difficult Times https://www.amazon.ca/When-Things-Fall-Apart-Anniv...=sr_1_1?ie=UTF8&qid=1522441542&sr=8-1&keywords=pema+chodron+when+things+fall+apart

cheers

So I went to the link healthlinkbc.ca... and it seems like I eat enough of their recommended foods, or drink milk, daily to cover my b12 needs. I am 64 - should I be checking the levels as perhaps, being older, I am not retaining b12? Easter blessings and good health everyone!

After diagnosis I was on a 100 percent organic plant base diet with a little bit of chicken and some fish. No meat.dairy free. I did this for two years. Initially from chemo and rads I was wiped out but after that I never looked or felt better. My naturopath had me taking a fish oil (krill) with Vit D to absorb better.and other supplements. Some docs recommends to preload with more D then back off. Can't remember what strength I started with. I do believe valter longo is onto something good.

Hi All,

Interesting discussion. I know I really struggled with the “Now what” feeling after completing treatment. You put so much energy into fighting the disease and then, when all the chemo and radiation are finished, you go home with pills (in my case Tamoxifen). I was fortunate in that I was part of a clinical trial so was monitored annually by my RO (and others as he moved to Calgary a few years ago). Ironically, the trial ended and they were going to cut me loose the year that I was diagnosed stage IV.

Wrenn, I agree that BC for younger women is a different disease. I was diagnosed at 38 and to be honest, I always felt that it would come back to bite me in the butt. Made it to 55 before I was back in the circus again. But I’m doing well and it’s already been over a year. Here’s hoping I’ll see my 60’s! Eat well and get lots of exercise so why not?

Hugs to all.

WOW, so much good information and lively discussion. :-)

I take Vitamin B complex. After finding my V-d at 22, GP asked me to take 3000 for 2 weeks, 2000 for a month then down to 1000. I have decided to stay at 2000.

Also read Colin Campbell and Miachel Greg, John A. McDougahall ( a tad extreme?).

Also bought book written by an Candian ND. It’s a bit old but liked the convenience of info on food nutrition data

“The Complete Natural Medicine Guide to Breast Cancer: A Practical Manual for Understanding, Prevention and Care“

Trust your treatment and stay informed to make your own decision are interesting dynamic to navigate, but have circle of sister here definitely help us stay informed.

My friend has to repeatedly ask for additional 5 Yr hormone therapy before her MO agreed. Same when she asked for Prolia as her hormone therapy option to reduce risks of osteoporosis. If BC cancer currently doesn’t have any systematic approach to monitor distance recurrence, it is up to us kind of to research what’s out there to help us stay ahead. Vs. waiting for symptoms to appear then MO orders diagnostic.

It does boggles my mind that no systematic monitoring process in place still today given 20+% risk for distance recurrence even on early stage BC.

More studies are suppprting 10 yr hormone therapy and even 20 yr. but without being part of standard care, it will be a uphill battle for us to request and weighting the SE vs recurrence, instead of sole opinion the MO.

The biggest and most difficult to tackle is stress. Yet maybe the most important factor in our healing process.

Okinawa people lives to 100’s maybe because their genes, maybe because they don’t live the rat race life style we do. Retiring early is tempting.

I wonder whether the worrying about recurrence or checking for it is not that common? Most of the people I know with cancer have no idea what they took for treatment and blindly trust that it won't come back. Maybe those of us visiting forums are in the minority and the oncs are used to patients who don't ask questions?

I know of 3 people in my building (there were 5) and not only did they have no interest in the centre right across the street where support and meditation etc are available for cancer patients but they don't want to talk about cancer. I avoid mentioning mine because I feel like I am "dwelling on it".

I am always surprised when I ask someone what medication they take and they say "it's blue". :-)

Hoping everyone gets access to drugs like Ibrance. Awful to dangle a carrot in front ofa horse. Not fair.

Wrenn. I want to know what's down the pipeline and prefer not to stick my head in the sand. if I did that, I wouldn't have known to exercisie my brains out to fight a recurrence as study's show it is so good.

I also want to know about my meds and if I will grow a third eyeball from SE. No pretty blue pill for me, I want the name of it and exactly what it does or doesn't do. Docs usually don’t like my endless questions and research presentations.

I don't want to immerse my self in cancer for daily living but I do need to know what's going on in the field. A happy balance is good.

I don't understand how some people get treatment without knowing boo about it. It flabbergasses me. That's when mistakes happen as really we are our own advocates and need to be aware.

Ok off to bed. I understand sleep is a good thing accordingly to research. Now if I can discipline myself to tuck in. Easier said than done!

marianelizabeth - this morning the actual protocols are on the website & they have clearer eligibility guidelines than in that summary.

Palbociclib/Ibrance protocol

http://www.bccancer.bc.ca/chemotherapy-protocols-s...

It seems that patients need to have been off an AI for 12 months but in some cases 6 months is ok....? I don't quite understand it.

& they can't sequentially go to or from the Everolimus and Exemestane protocol

http://www.bccancer.bc.ca/chemotherapy-protocols-s...

It would seem people have to choose one or the other & if doesn't work or stops working then what... nothing?

I wish they had a better explanation of the reasoning behind these protocols & funding...

Moth: Thank you for the link from Mar 29th. It's a dense read but I've read it twice and feel much more prepared for my appt w surgeon on Tues.

Thank you!!

Day 4 on chemo round 2. not as sharp as yesterday but all right, I am stubborn and determined to get 5k walk in and feel better now.

mariane. my friend did her treatments in Vancouver so am I, her experience and knowledge taught me the importance of being informed and advocate for myself. Glad to hear you have a MO you like.

Another example is Zometa, my understanding is it will help patients in distant recurrence as it makes bones stronger and harder for cancer cells to penetrate. Post menopausal patient, take with or after chemo. My friend found out about it thru a patient who is being treated in Asia, also offered by large cancer centers in US under insurance. But it was only used to treat metastatic BC in Canada. Cancer Ontario endorsed its benefit in 2017 in non metastatic Bc to prevent recurrence. 9-10 yrs after My friend start taking it. She paid herself.

PUblic health care focus on standar care. Even competent and nice Doc will not treat us like we are their family members. So I will respect their opinion but definitely want to know what my options are. BC cancer is unlikely to volunteer private drug options or drug options still being studied and not approved by BC government.

Study takes years to conclude something for standard care, I respect statistics which is what our standard care centers around, but I want to know outliers too.

Navigation and self education on an complex topic such as cancer is not easy, but like many of you, I would like to participate however I can on the part I can control or contribute.

Talking thru it with you ladies here definitely is helping me to learn.

Hope everyone is having a good weekend

BlueSky - no worries! I can tell you what my appt with the surgeon was like. Full physical exam, examined breasts while I was sitting up, then lying down, full breast exam, lymph nodes in neck, lymph nodes in armpit, full abdomen palpation etc. Then got dressed & we talked. My surgeon wanted to know things like age when I started menstruating, number of pregnancies & births, birth control use, family hx of cancer etc.

We got a preliminary aka clinical staging. On this board few people seem to use the TNM staging but that's how the surgeon gave it to us. Final staging isn't till after surgery since this is only based on imaging and clinical exam of lymph nodes. Then we talked about surgical options - because of the size and location of my tumor, the recommendation was for lumpectomy aka breast conserving surgery + sentinel lymph node biopsy + rads. We went over what the sentinel lymph node biopsy involves & recovery time from the surgery. He took some time to explain techniques and what cosmetic result we could expect.

We also learned that after the surgeon removes the tumor, we would be handed off to the medical oncologist who would guide the rest of the treatment & make recommendations regarding chemo. There was a bit of talk about Oncotyping and genetic screening (but all that was done by the MO later)

I signed lumpectomy surgery permission paperwork before leaving, got a requisition for pre-op bloodwork, and had a tentative surgery date right away. That date got moved up by phone a couple days later.

Dh & I both felt really good leaving the appointment.

If you like to hear numbers and statistics, you can ask your surgeon. I don't so I steered conversation away from that as at that time I really didn't want to talk numbers...

I think the most important thing to be clear about when leaving is what they're recommending and why and whether you understand / agree with their recommendation, and also if you're comfortable with the timing of the surgery and how promptly you'll be treated.

My surgeon was available by email & phone for questions & he gave us each a card with his info (I only contacted him once & he got back to me in minutes).

I would ask a surgeon about how to contact them if you have questions before or after surgery.

I would also ask them if they would be willing to call you with the pathology results & give you a summary by phone (clear margins, clean nodes etc) before the surgical follow up appointment which is usually 4 weeks later.

hth! keep asking questions if you want more

BlueSky you are early in this process and it is very scary. It's ok to ask for support. Of course you feel lost; you are still in the dark. I was so stressed before meeting the surgeon and I wish now I had some anti anxiety meds, as others have recommended on this site. I think I will ask for some to help endure any future waiting times.

I felt much better after meeting with my surgeon, knowing someone experienced and compassionate was looking after me. I hope you like your surgeon. If you are meeting her in the Diamond Centre, you will find the setting calming too, airy with with beautiful artwork. It all helps.

The surgeon will explain the surgical process and show you where she will make the incisions. She will explain your path report in more detail and tell you what the treatment program might look like. My surgeon spent an hour with me answering questions and helping me feel more confident about next steps. For me, she said radiation and hormone blockers but likely no chemo. I still haven't met with an oncologist though and they will certainly have input on this.

My biggest surgical question was about anaesthetic - general or block. I have had both before. In the end I chose block and had no pain or nausea, quick recovery. But everyone is different.

I know how hard it is to tell people and it is easier to do so when you know the treatment plan. I made a list of people to tell and worked my way through it. I found one on one conversations easier than email. I started with friends who have had cancer.

I don't have kids so can't advise on the best way to tell them, but there are threads here about this https://community.breastcancer.org/forum/157/topics/861035?page=1#post_5115375.

We are here for you!

Mariane. Is your failing nerves from RIBP. Not sure if that's the spelling but on lymphedema thread they have posts about people's nerves giving up. Peoples hands not working etc. There are a couple girls on there that are pretty smart.

Bluesky. Go ahead and tell dr Davis your a nervous wreck. She'll take that into consideration and probably calm you. She's approachable.

Edited to add: just thought of something my mom had lidocaine and ketoprofen cream made up for shingles pain. I wonder if this would be an option for some with nerve pain in one area. She discontinued use because she’s way to old to stay on schedule and had to put it in her hair which she hated doing. Messy.

Hi All;

I wanted to share an update with you. If you have any comments, I'd love to hear them...

It's been recommended I avoid radiation because my autoimmune issues could hinder proper healing. 'Normal' people usually heal 4-6wks after treatment is finished, I could take 6x times that. Also, Dr concerned about Grade 3 radiation toxicity for me: tissue necrosis, skin grafts, all sorts of other gnarly quality-of-life considerations. (Normal peoples risks are 5%, mine are 25% which the RO Dr thought was too high.) A total mastectomy is recco'd, with reconstruction at same time - if I choose. If I decide to delay the reconstruction I would have to wait 5yrs - avg wait times. So: I need to think about recon and meet w plastic surgeon - next Tues at 3:30. I go back and forth on reconstruction… Surgery is May 1st at MSJ. I don't get to choose my plastic surgeon - they have one they work with. That goes against my research-make-a-plan-make-a-list personality. The Dr I meet next week has no web presence, no qualifications listed, nothing. I had heard great things about another plastics Dr - Macadam - but she works w VGH, not w MSJ.

I've had a MRI - results are inconclusive in nodes, and note at 1.8cm mass surrounded by 3.8cms of micro-calcifications in my R. It also showed a spot on my liver which the RO Dr said needed to be u/s'd. I'm sure it's nothing as MRI contrast shows great detail, often nothing to be concerned about. I think my L side is ok? Forgot to ask, Surgeon doesn't have the report yet, only RO Dr.

As you all know, I won't know about staging until after the surgery - they'll perform the node biopsy at the same time, but results will take at least 10days. If no spread, then I'm done except for hormone therapy. If evidence found in my nodes then I proceed to chemo.

Any thoughts?