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  • NVDobie
    NVDobie Member Posts: 122
    edited March 2018

    I should also mention, I have multifocal IDC mixed with DCIS. found 6 tumors in lumpectomy. Yet, Surgeon, MO and Radiologist don't think Mastectomy is necessary.


  • moth
    moth Member Posts: 3,293
    edited March 2018

    I think the way they look at it is that mastectomy has its own risks - surgical risks during the procedure, infection, nerve damage etc.

    So you need to balance those risks with the risks of radiation, given that studies show the benefits are the same.

    But the BC Cancer agency guidelines do list mastectomy as an option to consider in multicentric disease. I suspect though it depends on the size of the tumors as well... http://www.bccancer.bc.ca/books/breast/management/... (see 6.3.1.1)

    Also for your consideration, a study comparing morbidity & mortality within 30 days of mastectomy or breast conserving surgery (l-ANP)
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC18770...

    "The mortality rates for mastectomy and l-ANP rate were 0.24% and 0.00%, respectively (P = 0.062), with an overall mortality for all cases of 0.128%. The 30-day morbidity rates for mastectomy and l-ANP were 5.72% and 1.87%, respectively (P < 0.001). The most frequent morbidity was wound related with an overall incidence of 3.63%"

  • hugz4u
    hugz4u Member Posts: 1,818
    edited March 2018

    dobie I can't answer your questions and might ramble on but I did have double mast. Preventive left masectomy as right was full of mixed types cancer and i felt I made a good choice as the biggest ILC tumor is known to go to other breast. I'm diagnosed as ILC.

    My point is I'm no longer worried about getting cancer on other side. so for me I felt NO breast was relieving.

    Avoiding radiation might be nice. I just found out there is small scarring in lung where they hit me while doing breast rads. It probably was unavoidable and I hope down the road it doesn't bother me. One thing about rads is I have to stretch out the breast area scarring a few times a day as it's sooooo tight. I did get the most one can get and maybe that's my problem to being stiff as aboard.

    With masectomy you can get lymphema because there are a few nodes in there that go. This could disrupt the lymphatic system, not usually but very small chance. If you get one node out of armpit even sentinel node test you ARE at risk. Dont believe your doc if he says no. That means he has not spent more than 15 mine in med sch on the lymph system like most docs. I have lymphedema.

    I think moth has some good articles. I notice she ususlly has research at her finger tips. I like that!

    Just thought I'd give you some other things to think about that may have not crossed your mind.

    Nite all

  • NVDobie
    NVDobie Member Posts: 122
    edited March 2018

    wrenn, moth, hugs4u

    Thanks for your posts. I am leaning towards Mastectomy so I can avoid radiation on left breast and be certain there is no other tumors missed. Definitely don't enjoy debating options with myself. Such personal thing, can't really discuss with anyone else but ladies here who actually understand what I am going thru.

    I am reading up on the link moth sent me. Will have questions ready for my 2nd opinion appointment

    Now on to Oncology appointment, I seem to get different doc each time before I get to see my actual MO, sometimes I don't even get to see my MO. Yesterday, my MO sent some other doc to see me to take notes to MO. So never saw MO. The doc wasn't very pleasant.

    Do you know whether we can ask NOT to be seen by an specific doc who is under or work with our MO? I would like to avoid this unpleasant lady if possible. Positive energy only.

    What do you think?

  • janky
    janky Member Posts: 478
    edited March 2018

    NVDobie - I had a left side mastectomy, chemo then radiation, 25 + 5 boost for a total of 30. I was originally diagnosed November 2016, surgery December 216 which showed Invasive Ductal with positive margins (this is why the radiation was suggested). I, too, have some scarring in my lung, probably from the rads. I guess I am just letting you know that sometimes radiation will be determined by the surgery, should you opt to have it, and like all treatments, you decide to take it or leave it. I still ended up, pretty much exactly 1 year later, with MBC - a small tumour on my hip being treated with letrozole and ibrance. This is not a Debbie Downer ;), just giving you more to digest. I actually asked my MO in February if I could choose a different one (he is moving to a different center) and he said that ultimately they want patients happy, so yes we can. (this is in Alberta) If I shouldn't be posting here please advise...

  • hugz4u
    hugz4u Member Posts: 1,818
    edited March 2018

    NVDobie. The polite and professional way is this. “ last time I saw “madame x" and I felt so uncomfortable with her, could I see just you or just have her observe with you without her input “ or something like that. Docs ears prick up when you use the polite word ,"Uncomfortable" which basically means you dislike or disapprove of that persons comunication etc. If they press for further reason just say. Our comunication style differs. They usually don't press further.

    Edited to add: I like your comment. Positive energy only. You could say I don't receive the positive energy I need at this time from madame X. That sounds polite enough.

  • NVDobie
    NVDobie Member Posts: 122
    edited March 2018

    wrenn, hugs4u, Janky

    Thank you, thank you. yes, i was referring to to the resident although she looked quite mature (40-50's). MO so far is all right. he has good days when he smile more and bad days when he seem tired. Don 't we all.

    The lady resident i saw yesterday, i think i will find a way to ask before i do next follow up appointment in 3 weeks. The challenge i wont see MO till after i see the resident. So I will ask nurse hotline what options i have.

    Thanks for the tips on how to politely bring this up, my nature is very direct so good learning here to ask respectfully of the doctors without comprising my care and my stress/feelings.

    The resident came in without any my file, she just took notes and went away to ask my MO. The first question I asked the resident was whether I have IDC mixed with DCIS, she asked me: why do you want to know. what will be the point of this question. I describe some abdomen pain (thanks to moth for the tips), she challenged me on not knowing how many times of day it happens and how long it precisely last each time. I will take better notes in the future, but boy she was rude.

    Each province seems to have different process in managing this. I am assuming we will go thru the resident before MO in the future years to come, thru hormone therapy follow up and all.

    Being public health care is great but has its own challenges. A friend of mine went thru 10 yrs ago tell me we have to be strong and advocate for ourselves when we dont agree with standard care. She has requested twice before her MO give her 10 yr Hormone therapy vs. standard of 5 yrs.

    The great things about this community is we help to educate and inform each other, which make us stronger advocates for ourselves.

    Thanks everyone.

    Getting ready for chemo round 2 tomorrow! Here I come.


  • bluesky1969
    bluesky1969 Member Posts: 80
    edited March 2018

    Hi all;

    I wanted to let you all know I rec'd results of my Core today: IDC, e & pr + - tumour grade 2. That's all I know. I see a surgeon on Tues at MSJ. I know I'll have a lumpectomy but not sure what other treatments await. Does anyone know? Chemo? Rad? Mastectomy? I know that without the excisional biopsy results it's tough to know - just wondering if anyone has had similar and what the treatment is.

    Haven't told my boys yet - want to have a treatment plan in place.

    Still fell lost, still frustrated and gated at each stage.

    Hope you are all well,

    Bluesky

  • bluesky1969
    bluesky1969 Member Posts: 80
    edited March 2018

    Me again;

    I added my diagnosis - such as it is.

    thx ;)

  • bluesky1969
    bluesky1969 Member Posts: 80
    edited March 2018

    Oops:

    And thank you all for your insight and support over the last month. I wouldn't have managed as well without your feedback.

    Thx!

  • bluesky1969
    bluesky1969 Member Posts: 80
    edited March 2018

    Thanks Wrenn. I'm finding the wait more difficult than the info I was told today. I just want to get bloody on w it ya know? I want it gone. Maybe I should drink some vodka, pour it over a kitchen knife and google the surgery and do it myself? My patience is gone. I prefer a five point plan, checking off items on said five point plan, and solving the problem the best I can. All this not knowing and leading and what feels like living a double life is making me pretty grouchy - as you can tell :)

    Thanks for reaching out and letting me know someone is listening. Makes Such A Huge difference...

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited March 2018

    So many of you are here which I am so happy to see after a period of quiet. Thanks hugz4u to mention me and I do normal chime in. Getting back from 4 weeks in NZ followed by numerous appts and a CT scan (stable), I was in Vancouver by the end f that week for celebration of life service and wake plus another fun day hanging out with 3 generations of family plus friends. Our wonderful friend died of CJD, not 3 months after diagnosis. I was back briefly in Victoria returning to Vancouver to spend the last 3 days with his wife. Tiring but also so good. Home tomorrow and I want to respond several of you and I will.

    Bluesky69, my beginning was all at MTSJ hospital and was all good other than cultural issue with the very nice Filipino nurse navigator who called me dear and honey a few too man times. Decades ago in nursing school we wee warned not to call patients such "endearing" terms as they may come across at patronizing. Once I saw the breast surgeon and a lumpectomy excisional biopsy) that pathology had me learn the patience of what we call the "waiting game." Mine was 3 weeks and the results were surprising to everyone as my cancer was much more than expected given my age and that it was IDC. But m BS was good with me though many dislike her bedside manner.

    Until the pathology comes back it really is unknown territory.One thing to keep in mind is that each and everyone of is an individual from the beginning and right through. Please remember we are here for you and ask any questions that come up. Even now, into year 6, I like to know that we have friends here at BCO. This site has been a lifeline from the start.

    Hugs, Mafrian

  • bluesky1969
    bluesky1969 Member Posts: 80
    edited March 2018

    Thank you for the head's up! Will let you know for sure : )

  • moth
    moth Member Posts: 3,293
    edited March 2018

    HI BLueSky - well, I'm bummed for you that it came back as cancer.

    If you do lumpectomy they will likely recommend radiation.
    Whether they recommend chemo depends on several factors. You can actually read them all in their management section. You may also qualify for Oncotype Testing where they send a sample of the tumor to the US for genomic testing to assess recurrence risk. Whether you qualify depends on your age, and/or since your tumor is Grade 2, tumor size (it has to be T1b or bigger : tumor greater than 5 mm, but less than or equal to 10 mm )

    BC Cancer Agency breast cancer clinical management guidelines, incl the Oncotype guidelines are all here:
    http://www.bccancer.bc.ca/books/breast/management/...

    When you see your surgeon they will recommend whatever surgical approach they think is best. Then after your surgery you will get referred to the Medical Oncologist who will make recommendations regarding chemo - so expect it all to still take some time before you have a full plan.

    hugs

  • hugz4u
    hugz4u Member Posts: 1,818
    edited March 2018

    Mariane,wow you have really been rocking the west coast since you got home. I don't know what kinda Energizer battery's you have installed in you, but they must have some kind of anti cancer, anti fatigue serum in them. You have literally not stopped since before NZ trip! BTW it was so nice to support your friend for three days. It's niceto give back isn't it!

    Bluesky. Sorry bout diagnosis. Ugh rots! Your here stuck with us, glued to the hip.We're happy bunch at least. Waiting game is so hard. Use this time to enjoy yourself fully to do whatever you want to do in life before you get chemo and other time sucking appointments. I'm being honest here. Cancer can be time consuming and tiring. You've got the get up and go now so Go get pedi, walk the sea wall. Enjoy the boys. Long weekend getaway would be nice. You may also want to start a journal just to get your feelings out on paper. It's healing. Of course you can rant all you want here. We know what it's all about. Been there done that! Ps. Mariane will lend you her special energizer battery's when you really need them! Wish you a really nice family holiday.

  • dearlife
    dearlife Member Posts: 634
    edited March 2018

    BlueSky so sorry you had to join us, but lots of support here. I know what you meanabout getting it out. I felt much more secure after the surgery and really had no problem with the operation. I hope they schedule you soon.

    Mariane, nice to hear from you! You were missed on these boards.

    NVDobie, you shouldn't have to put up with bad attitude when going through this. I hope you can stop it in its tracks. This resident needs to learn a few things (basic manners for one.) Good luck with your chemo.

    I am on hold waiting since March 12 to hear from BCCA for appointment with RO. Apparently they have a “long list." Can't plan much until I know the schedule....

    Hello to Moth,Wrenn, Janky, Hugz4u, Sadiesservant and everyone else. Ilove to puzzle over your name and the meaning behind it 🤔!

  • NVDobie
    NVDobie Member Posts: 122
    edited March 2018

    wrenn

    Thanks for your support. I found out today during my chemo session that she is a fellow. Will ask before next appointment nicely whether I can be seems by other resident or fellow if my MO is busy.

    Moth and everyone

    Do you know what tools are available to us to monitor risk of metastasis or distant recurrence after treatment? Annual mammogram will only monitor our breast. It seems mostly patient here has mentioned it was discover by patients once they have symptoms. Diagnosis tests are plenty but that is a bit late to the game.

    Would love to know what we can do test or otherwise to monitor the risk beside simply wishing for the best.

    Run into an older lady during my chemo today who had metastasis to several places after 14 yrs. also met patients have it back without any symptoms only discovered when having an different health issue checked up.

    1. Is annual blood test for tumor marker beneficial?

    2. More studies showing longer hormone therapy provide benefit, 10 yrs even 20 yrs have been studied. But 5 Yr is still standard care. Citing SE from hormone therapy. Besides 2ndary cancer, the rest of SE is less concerning than recurrence.

    3 annual MRI or CT or X-ray or bone scanWill need be weighted against additional radiation exposure?

    Please share your perspectives and thoughts.

  • hugz4u
    hugz4u Member Posts: 1,818
    edited March 2018

    NVDobie. After chemo rads, They monitor you for while then release you into big wide world.Can't remember how long. GIRL chime in please!


    Then it's up to you to report to your MD any strangeness or pain, anything that lasts three weeks I was told is the standard.


    For example my cancer breast really hurt for about a month when I finally made an appointment with MD. Because it was deep into the chest wall pain I was recommended to surrey cancer centre where we talked and ruled out a bunch of things. Took a couple weeks which is pretty fast these days. A ct scan was ordered because I am grade 3 and a return wouldn't be surprising but expected especially because my hockey puck sized tumor was invaded to chest wall.

    Fortunate it was all good and determined that it probably was my chest lymphedema in its first flare because I was sick and inactive which set me off.


    This all usually turns us into hypochondriacs running to doc for things that turn out to be silly but are serious to us. “Hi doc....it's me AGAIN!"

    This is how our province does it. I know it sounds ridiculous to be thrown into the wind once treatment is over. It brings on real stress and many have to seek counselling to wrap their head around it and move forward. It can be done. Plus being on threads is a great support.

    Yes it can make you fearful not to have constant servailence and that is why you are running into people that say they found there return of cancer themselves or a doc found it returned after some other sickness. I know it's a hard pill to swallow. We want to do everything to ward off cancer return. I think USA does after cancer scanning but not 100 percent sure.

    Someone here probably knows the real reason why they don't follow us up forever. Perhaps if your on bone destroying drugs etc they may give you a bone scan down the road.

  • moth
    moth Member Posts: 3,293
    edited March 2018

    NVDobie - I'm just beginning to wrap my head around the whole 'what happens after'. I think the risks of too much scanning outweigh the benefits but at the same time, I have to say I'm not finding tons of studies on this, and the studies I did see are older, when possibly the scans weren't as good, and when stage IV treatments weren't as sophisticated. I suspect that we will see new data on this due to the much more aggressive scanning that some patients in the US undergo.

    I keep holding on to the concrete things WE can do. This 2017 study analyzed research on lifestyle choices to prevent recurrence. Exercise reduces recurrence by a up to a whopping 40%. http://www.cmaj.ca/content/189/7/E268

    "

    • Physical activity can reduce breast cancer mortality by about 40%23 and has the most powerful effect of any lifestyle factor on breast cancer outcomes.22
    • At least 150 minutes per week of physical activity is recommended

    So my take away is we need to take our doggies for many many walks & hikes :)

  • hugz4u
    hugz4u Member Posts: 1,818
    edited March 2018

    Yes I get those dogs eyes and do exercise at 150-300 minutes a week depending on time of year. 40 percent is what I’m banking on.

  • NVDobie
    NVDobie Member Posts: 122
    edited March 2018

    Hugz4u, moth

    Thanks so much for your posts. Here are the sites I found to share with you all.

    Everyone else please continue to Chime in.

    To have our future surveillance in the hands of ourselves and our GP or MO are protocol I guess. but we all know Doc are humans some are better human than others. Mistake happens, neglects happen.

    So hope we have each other to beef up our surveillance knowledge and stay ahead like moth said,

    Full CBC should be easy but not sure there is much there besides CRP for inflammation, CTC tumor marker test probably not covered neither is Vitamin D. I tested my V-D after diagnosis after reading about it. I had 22 where the normal range starts 75. Further readings found out the latest Health Canada upper limit is 4000 IU a day, so I am taking 2000, but have run into patients who takes 3000 and 4000.

    https://qap.sdsu.edu/education/bcrl/Bcrl_followup/bcrl_followup_index.html

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881221/

    Also found a cancer care private clinics founded by a naturalpathic Doc (oncology) in Port Moody. Need to be her patient before test can be done. 300 for initial consult, 600 per test. Good business.

    http://www.portmoodyhealth.com/cancer-centre/cancer-testing/circulating-tumor-cells-ctcs-cancer-biomarker-testing/

    Moth

    100% agreed on the life style. 5k walk a day is my routine now, go up to 8-10 if I am up for it. also thinking changing to Vegan diet after chemo phase. I tried out 3 moths before chemo it actually made me feel better with my long term tummy issues. Eating some organic bone soup and chicken soup since chemo to help with nutrition and protein. But may ask you for advice inthe future.

    Talk soon. Ladies

  • moth
    moth Member Posts: 3,293
    edited March 2018

    re vitamin D - I have an endocrinologist on my team already because I had previous thyroid issues & she'll order D for me if I ask (it's only covered if a specialist orders it) ... BUT you can do it yourself at an LifeLabs for ~ $35 http://www.lifelabs.com/mylab/Pages/VitaminD.aspx


  • NVDobie
    NVDobie Member Posts: 122
    edited March 2018

    Thanks, moth

    Good to know about specialist orders on Vitamin D. Life lab charges me $65. :-( stilL worth to know. I am generally not a supplement person, but taking D and B complex now.

    I am reading a couple books, sharing the ones I like with you ladies. Please share if you have any book to recommend

    https://www.amazon.ca/Whole-Food-Guide-Breast-Cancer-Survivors/dp/1572249587/ref=nodl_


  • moth
    moth Member Posts: 3,293
    edited March 2018

    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...




  • moth
    moth Member Posts: 3,293
    edited March 2018

    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

  • janky
    janky Member Posts: 478
    edited March 2018

    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!

  • hugz4u
    hugz4u Member Posts: 1,818
    edited March 2018

    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.

  • Vilma65
    Vilma65 Member Posts: 69
    edited March 2018

    Hi, amazing news for British Columbia gals, Ibrance was finally approved for funding under the BCCA, here is the link. http://www.bccancer.bc.ca/systemic-therapy-site/Do...

    Esperer, I know that you were thinking to maybe continue only with Femara but still, is good to know that is accessible now

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited March 2018

    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.

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited March 2018

    Here it is Friday night with me having an espresso and reading breast cancer.org. Suddenly I see Vilma 65's post from three hours ago. I just took the last Ibrance on my eighth cycle. I admit to being exhausted and had a long nap this afternoon and thought I would make myself an espresso. Having read Vilma's post I am not sure whether to have a big glass of wine to celebrate or have a big cry. Last Saturday I spoke to Karen McLaren on the phone about her campaign to have Ibrance covered by our provincial government. I hurt her most recent interview on CKNW a few weeks ago and questioned her about what line 1 and 2 mean. She seemed to think that it meant she would not be covered because she had had previous chemo. My understanding has always been that line 1, Ibrance with Letrozole is for those women who had not taken an aromatase inhibitor prior. Second line is for those of us who have taken an aromatase inhibitor. If what I see in this link is that I will not be covered. I do have insurance which pays for my Ibrance and Faslodex so I am very lucky. I have no way of knowing how many of us there are but this is unfair. It makes me feel like the government will not pay for me and others because an aromatase inhibitor failed us and so we are not worth giving the drug to.

    http://www.bccancer.bc.ca/systemic-therapy-site/Do...

    I hope someone weighs in here and I think I will have a glass of wine regardless but alone here this evening I am really saddened.

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