Canadians in British Columbia

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  • NVDobie
    NVDobie Member Posts: 122
    edited March 2018

    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.

  • janky
    janky Member Posts: 478
    edited March 2018

    Marianelizabeth - So does that mean that even though it will/may be an effective treatment, because of a previous unsuccessful attempt at an ai, people with stage iv will be refused 'free' Ibrance in BC?

    NVDobie - My MO said I would take Letrozole for a minimum of 5 years, possibly more, so I hope that means it remains as part of my standard care? This is so difficult to process, 1 step forward, 2 back...health and happiness everyone!

  • Vilma65
    Vilma65 Member Posts: 69
    edited March 2018

    Mariaelizabeth, I can totally hear you and it does seem unfair, do you know why would they make such a decision?

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

    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!

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

    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...


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

    Moth, before I go reads those dismal sounding protocols, if it is true that one would have to off an AI for 6/12 months then it makes no sense at all. I was put on Ibrance 4 days after I stopped taking Anastrozole as my cancer team was so concerned about my aggressive recurrence.

    NVDobie, not sure which center your friend goes too and what her diagnosis and hormone receptors are, but my MO never let me think that I would stop at 5 years because she said more and more it was evident that research says continuing on to 10 years is becoming standard. I wanted off them because of S/E but now I see her reasoning. Pretty sure they knew I would recur looking back now. We do need to advocate for ourselves but we need to be careful with regard to others. My attitude for a long time has been to listen and empathize but to also know that each of has such an individual case. How are you making out with your chemo and how far in are you? Where do you have your chemo? Oddly, when I was doing chemo I felt the safest and best of treatments~~I think this was because everyone on the chemo floor was in the same boat regardless f cancer. I wish the best for you as you continue.

    Hugs4u, I like how you talk about a happy balance.

    In the past two weeks, the strength in my right hand has almost gone. I feel as though only a few days go by before another task becomes impossible. It was shoelaces first, then my pointer finger stopped working (noticed that while typing on my computer and only thumb works now) and last night in the bath I noticed that I can't clench my fist as I could (barely) earlier in the week. I saw a new RMT today for my tight chest fascia and she remarked that maybe it takes time for the nerves to completely fail. Not sure if I mentioned this earlier but I saw a plastic surgeon week before last as a follow-up from my breast surgery in June to remove my implants. That was before I knew I was recurring. Anyway, my PS in Vancouver referred me in June and only now did it go through. Never mind says me as she was more concerned about the nerve damage and crazy pain. She has referred me to another plastic surgeon who works as a team with a physiatrist~~she was going to make it urgent and I see the team at the Victoria General Hospital on April 10th for which I am grateful.

    Hugs to you all on this Easter weekend and I know we all have something to be grateful for.

    Marian


  • bluesky1969
    bluesky1969 Member Posts: 80
    edited April 2018

    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!!

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

    BlueSky - you're very welcome! I really like it that they have these fairly detailed guidelines and it's all available for us to read & be on the same page as the medical team and understand their decisions. One thing dh & I've found is that if you know all this stuff, and esp if you print pieces out, the appointments go much more smoothly and quickly. They'll explain exactly what you want, and they have a better grasp of how much background info you already have so they don't spend time on the super basic stuff but actually get into the things you want to know.

    best wishes for your appointment on Tuesday :)

    Hope everyone in the LM is enjoying the sunshine. I went for a 30 min walk this morning but my steroid crash is starting. It was nice to be out though the wind is cold!

  • NVDobie
    NVDobie Member Posts: 122
    edited April 2018

    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


  • bluesky1969
    bluesky1969 Member Posts: 80
    edited April 2018

    Hi all;

    I have an appt w a surgeon at VGH on Tues. It's my first appointment w her. I'm still feeling a bit stunned by my diagnosis so far, and while I'm impatient to get any treatment underway, I feel a bit lost. Any recommendations? Questions you wish you'd asked or questions you recco I ask? Anything I should advocate for?

    Apologies to all that I've been such a 'taker' on here, always seeking advice and answers not giving support back.

    with many thanks

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

    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 :)

  • dearlife
    dearlife Member Posts: 634
    edited April 2018

    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!


  • bluesky1969
    bluesky1969 Member Posts: 80
    edited April 2018

    Moth, Wrenn and Dearlife: You are my goddesses, I can't articulate how much your support has given me. This month would've been so much worse without you three. I send deep gratitude to each of you for taking the time and energy to walk me through all this, all month. **hugs**

    I do feel scared today. This wknd has been particularly tough. I hope this gruelling limbo is over soon. Took sleeping pill last night but my anxiety burned through it. Then took a .5 lorazepam and finally slept around 4.

    I'm not clear on the size: the radiology reports a few different measurements. It will be one of my many questions tomorrow. It feels at least a couple cms to me...? It's in the 4 o'clock position on my right side.

    I see Noelle Davis tomorrow - I have a good feeling about her. Fingers crossed.

    Hmmm...dog ears, eh? good to know :)

    I'm printing out your replies along and will add to my questions list.

    THANK YOU!!!

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

    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.

  • NVDobie
    NVDobie Member Posts: 122
    edited April 2018

    Bluesky1969

    Noelle Davis was the surgeon I ended up getting an 2nd opinion from and she is GREAT. She is also one of surgeon work at BC cancer agency. It is a dramatic difference comparing to my first surgeon from MSJ. I am kind of wowed by how different Doc can be thru this experience.

    Hope your meeting goes well.



  • bluesky1969
    bluesky1969 Member Posts: 80
    edited April 2018

    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?

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

    Bluesky. Both peter Lennox and Sheila macadam are affiliated with ubc reconstructive plastic program and are very involved with it. Both are highly recommended. Noelle Davis worked with Peter for my double mast.(he was head of plastic then not sure about now). with immediate implants. I had no troubles. Ask about diep procedure. It's were they take fat from your stomach and make a boob. It's one of the most natural and advanced plastics for recon out there. Long surgery. Not many dr do it in Vancouver. Maybe only those two, not sure. It’s been a long time since I talked plastics.I would want diep if they offered it to me but it was brand new on the market when I had recon done and only just available in Toronto( with one dr only doing)where all new procedures seem to make their way out west eventually.

    Unless they train more reconstructive plastic DRs your wait could be long if you don't take immediate reconstruction.its hard to get Drs to do these types of surgeries, training is years. It took dr Lennox a long time to get macadam lined up. I think she was on van island and he convinced her to come to van. Before that a beloved plastic surgeon that worked with Lennox. I think her name was Patricia cluggson if my memory serves me right, died of a terrible disease and it was such a great loss to the reconstructive plastic community.

    I called a few months back and dr Lennox Sec said it would be yr and half wait for me to see him about simple fat graft fill. Too long of a wait I'll just leave things alone.

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

    Quick comment re reconstruction. I chose it and it did not go well both attempts. However looking back I did choose it. Not sure who says you have to go with PS who works with BS at MSJH. My BS did my lumpectomy at MSJH but I told her who I wanted and she arranged to do my mastectomy at UBC with Dr. Lennox following after her part was done. I would not choose him as he is head of plastics and even when we are in his system the waits are very long.

    I am not one for regrets which is why I have managed pretty well over the years but if I had it to do over I would have just had the mx which is what I have now and like just fine!

    G'night!


    Marian

  • MusicalMagpie
    MusicalMagpie Member Posts: 2
    edited April 2018

    Hey everyone, I'm a newbie to the forum. The Canadian Cancer Society website doesn't offer much information, and most of the books I have read are at least 10 years out of date. I was delighted to find breastcancer.org with up-to-date info, and this forum, and the BC thread.

    I'm a SAHM of 6, grandma to 8, Kindermusik and Simply Music Piano teacher, empty nester. Eighteen months ago we moved from Burns Lake (north central BC) to Courtenay on Vancouver Island to be closer to the kids and grandkids. I'll be 66 next Tuesday.

    In mid-January I found a small lump in my right breast. A biopsy showed it to be malignant. On March 20 a surgeon performed a partial mastectomy and sentinel node biopsy. The lymph nodes were clear, but the cancer was "ductal in situ". Two days ago they took off the rest of the breast. Everything happened so fast, I am still processing it all.

    I am trying to look on the bright side. The cancer is gone, and I don't need followup radiation. I can have reconstruction down the road, if I decide to take that path. I was able to have the surgery locally (diagnosis in Burns Lake would have meant long journeys to Terrace, Prince George, or Vancouver for treatment!) I will be around to watch my grandkids grow up. My husband still loves me, and my cat could care less as long as I feed her.


    What is really preying on my mind is that I might have avoided this mess had I been more diligent about regular mammograms. "Ductal in situ" is a slow-growing cancer with no visible symptoms. It can be spotted in the early stages via mammogram, when it can be removed by a relatively noninvasive procedure. I had a baseline mammogram in 2012 when I turned 60 (on my doctor's insistence) but didn't bother after that. I was complacent because I believed that I was in the lowest risk bracket (6 pregnancies, nursed my babies 1 year or more, early menopause). I used to joke that my breasts were "too small to squish between glass plates".


    Anyway, thanks for listening. It's good to be able to talk about it.


    Bless y'all!

    Magpie



  • dearlife
    dearlife Member Posts: 634
    edited April 2018

    Welcome MusicalMagpie to this forum. There is lots of good information here and gentle support.

    I know what you mean about missing mammograms but with a small Grade 1 DCIS like yours, it might not even have been visible until recently. That's what the radiologist told me.

    I missed two biennial mammograms simply because I relied on the “system" and I didn't think about it. We are supposed to get reminder letters from BCCA or at least a question from our doctor but I got neither despite annual check ups at our rural health care centre. On top of that, there has been very little publicity about mammograms during the recent merger of BC Breast Cancer Foundation with Canadian Cancer Society. Then there is the ongoing medical debate about whether or not mammograms are even a good idea which leaves many women confused about what to do, or at what age to stop.

    I was also very upset that I didn't get my scans and am actually talking to CCS about a renewed awareness campaign in B.C. I think many older women skip mammograms because they think it's ok to stop.

    It sounds like you have an excellent prognosis. Good luck with your healing🌷💐🌸!


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

    Hi Magpie & welcome!

    Look forward to getting to know you :)

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

    Magpie it is late here in Victoria (not far from you) but quick note to say that mammograms are not great, especially for some breast, dense being one type. I had a mammogram 7 months prior to finding my lump and my return letter said come back in 2 years. Never beat yourself up. Dr. Susan Love's "Breast Book" has a good section on that subject. You can likely borrow it from your library though I bought it and consider it a Bible on breast cancer. She wrote the first editon about 28 years ago and she does an up-to-date redo every 5 years.

    Now, 11:01 and I am exhausted but feeling good e even on this rainy night.

    Good night to all my BC/BC friends.

    Marian

  • Roaming_Star
    Roaming_Star Member Posts: 66
    edited April 2018

    Hi. Thought i would join this thread. I am just about out the door of the victoria cancer clinic. Just started with letrozole a month ago. Generally i am doing ok with it. More aches and pains but still working on being more active. I can't say that i have had the best care in my cancer journey here. My cancer did not respond well to the chemo. No PET/CT scan or any other monitoring during chemo to see if it was effective. The counselling department sucks - i've had better lay counselling! I don't think that I really have a "team" for my care. I seem to have to advocate all the time for case management, wait lists, and discussing options outside the cancer agency box just is not allowed. There are no other options for second opinions - i have just found this whole experience frustrating. I will actually be glad not to go back to the clinic as i feel like the experience has been so shitty that psychologically i hate going into the building. I would like to get treated elsewhere. Anyone else experience frustrations with the bc cancer agency and oncology in general in our medical system? This is my first serious illness and what an eye opener to our health care system.

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

    Welcome all, just chiming in on mammos, I was diagnosed at 45 but they figure my cancer was there since 35. My dense breasts hid the slow growing cancer and it really didn't present as a lump but more like file folders stacked up. I don't know why they don't routinely mammo and ultrasound dense breast tissue. There is a very little chance it would be discovered by mammo alone. My daughter has dense tissue as most younger gals do. Something is wrong with this kind of a hole in the screening program.

    Roaming star. You can always say your not comfortable with your onc and change. It's sad you had a bad experience with such a terrible disease.

    Also the head of counselling needs to know their services were not up to your expectation.



    Yes our health system can be mind boggling. That is why I keep good notes, all my tests, etc in a binder for reference and I advocate for myself.

    My main problem with bcca is that they really don't like complementary approaches.My onc voiced his displeasure when I let him know I was seeing a naturopath and a cancer TCM doc that actually had a grant or something like that with bcca Ions ago but then moved on once the grant was done. He was so opposed that I didn't ever mention it again.

    Other than that I had real good service, I showed up one day at the booking desk, real sick without an appointment, my onc wasn't there and I had super low white cell count but I didn't know that. Bcca arranged to have a onc look at me that very day and popped me into hospital for a couple days to give me white cell boosting med.

    I also come here and learn from other gals experiences and they guide me to.

    I'm glad your done treatment. Yippie! You Just got to finish those nasty AI's.


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

    Hey BC/BC gang! Not long since I posted but have to say this past week has been way better than the previous. I never know what is the turn around but this time I started yet another journal, hand written with left hand and just for judging exercise and mood. I wrote the first blog post in 2 months and that felt good. If anyone is bored the link for it is at the top of the personal data.

    I went from 50 mg of nortriptylene to 25 mg a week ago and can feel the fog lifting. It was another trial for my nerve pain and did not work so waning off. I asked my Van MO for advice on changing MO here in Victoria and after trying her advice from a month ago, she made the change happen and I am excited for my new and younger woman MO who I see April 30. The plastic surgeon/physiatrist team I saw Tuesday was unable to help me but were lovely nevertheless. I am being referred to a specialist in nerve blocks and I will see the physiatrist in May.

    Today, two friends from the last trek I led in Nepal last May made a big effort to visit. One was visiting her daughter and family in Tswassen and the other lives up island. They worked out meeting up and getting to my house for tea and a long and leisurely walk. This is on top of an outpouring of support on Facebook via my blog.

    And Hugz4u, I love the UBC study! I feel truly blessed to get 19 hours of Virtual Reality over 4~~6 day weeks to see if distractions work and/or cage the cognitive parts of the brain. They brought all the equipment over last weekend and I have tomorrow off. What an incredible opportunity if you have had/have BC and have a pain score of 4 and above on a scale of 1-10.

    Marian

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

    Hi All,

    I just want to chime in to say that over my 17 years of experience with the BCCA I have had excellent care. It wasn't always perfect but I have felt well cared for throughout my journey. Hugz, your comment about complementary therapy is interesting as my MO is very supportive of alternative therapy. His only concern is that he wants to ensure it is not toxic and that it does not cost me a fortune. He went so far as to write to my naturopath to ask questions about what he was targeting with his suggested treatments to help me to make a more informed decision which I appreciated.

    Roaming Star, how do you know that your cancer did not respond to treatment? Typically initial treatment does not involve scanning as it is extremely unlikely that anything would show up unless you are Stage IV at diagnosis. The problem with BC is that those small, undetectcells migrate and sit inactive in your body until something triggers them to grow. This is what happened in my case. I had no evidence of disease (and did have a couple of scans over the years when I had symptoms) until many years later, when almost 16 years after I was originally diagnosed I had a right pleural effusion.

    I wish you all health and happiness as you put this behind you.

    Hugs.

  • NVDobie
    NVDobie Member Posts: 122
    edited April 2018

    bluesky1969

    Do you know your recurrence risk? With and without radiation? Maybe ask radiation Oncologist what is the risk of cancer recurrence without radiation?

    Is chemo in the plan or not? Have they asked you to do oncotype test? That is normally used for determine chemo effectiveness but analyze recurrence risks.


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

    just chiming in on the mammos - I had a clear mammogram in June 2017, biopsied positive for IDC in Nov & removed at 1.7cm in Dec. That sucker either grew super fast (possible as it's Grade 3) or it was there & missed.

    I do kind of wonder if anyone has gone back to look at the June films to see if it was there....

    And speaking of screening - I posted this yesterday on my Feb chemo thread but want to share it here too.

    "Just saw the new guidelines for breast cancer screening from the American College of Radiology, published March 2018

    They're recommending breast MRI for us if we have dense tissue or diagnosed by age 50.

    "Breast MRI is also recommended for women with personal histories of breast cancer and dense tissue, or those diagnosed by age 50."

    Full text here https://doi.org/10.1016/j.jacr.2017.11.034

    summary write up at DenseBreast Info is here: http://densebreast-info.org/higherthanaveragerisk.... "

    I don't expect msp to start covering this so I think I will opt to pay privately, unless my doctors make a really good argument that these guidelines are too aggressively in favour of breast MRI.


    Glad to hear from all of you.


    Marian, esp nice to see you back and feeling better and had a lovely visit with friends. Hope the new members of your team are brilliant & find effective solutions for you.

  • NVDobie
    NVDobie Member Posts: 122
    edited April 2018

    On Mammo

    Has anyone used tomosynthesis 3D mammogram? I asked my MO when I first met him regarding the accuracy of Mammo when it comes to dense breast tissue, he said he will order Tomosynethesis.

    Any thoughts?


  • NVDobie
    NVDobie Member Posts: 122
    edited April 2018

    also a quick question about chemo.

    Any of you ladies were or are on TC for chemo? How many sessions you were prescribed?

    I have 4 sessions planned and half way thru. One IV every 3 weeks. One of surgeon I met ( 2nd opinion surgeon for my margin re-excision discussion) seem to think it is short.

    Also seeing some our Americans peers are going thru 16 session for Similar diagnosis. Just wondering whether BC has a accelerated dosage or what have you.