Canadians in British Columbia
Comments
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New day...I would definitely ask for a PET or an MRI so you know exactly where you stand. i thought I was stage 3 and my treatment was based on that, had a ct scan, bone scan and chest X-ray which didn't show anything, but now it turns out that I had bone mets all along, after I paid for a private MRI. Things would have been done a lot different apparently...no surgery, chemo or radiation. To think I did all of that for nothing makes me a bit ticked off.
Better to know everything upfront IMHO.
All the best to you...
Carrie
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Allyp, I would also keep Dr. Shenkier in mind as a backup. Also we all need to keep open minds on MO's as each of us is so individual that one doctor may work for one but not for another.
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Carrie, your history reads so much like mine. I would be ticked off too. How long after did you pay for the MRI that showed the mets?
I saw my MO yesterday ~~actually one of the GP's who I really like, Dr. Cochizza and then she talked to Dr. Shenkier who I saw briefly. Bone scan ordered and also a referral to a bone specialist as bone density test shows increased osteopenia. Honestly have not been worrying and in fact feel a bit like it is overboard but Carrie your post makes me feel like maybe it is a good idea. Bone scan Dec. 18
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Thanks everyone!!
It's a strange thing. The GP, surgeon, all checked the collarbone. They seem to assume that if it spreads, it'll go there next and there was no point in checking any where else. I suppose other than an MRI, it's a matter of us reporting any additional lumps or new sore spots?
Carrie61, did you have any symptoms from the bone mets? I looked at the MRI clinics... what kind of scan do you order? Is it a full body MRI?
Updated: No doctor has said anything to me about a bone scan or CT scan.
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I had a full body MRI at a place on Broadway. iT was done right after my treatment was finished due to the fact that my naturopath oncologist was checking my tumour markers that were slowly rising. $2500 later and it found 4 bone lesions which were consistent to bone metastasis. i did have some back pain, but I had it for years and was getting treated by a chiropracter. In hind sight this could have been from the bone mets.
i would request a PET/CT scan, since MRI doesn't show actual cancer activity, and request is not the right word, I would demand.
Marian, hope your bone scan shows nothing, but on the other hand mine showed nothing either😟.
New day: don't be afraid to throw your weight around, it's your life! II have had too many "mistakes" happen because I wasn't educated and didn't want to bother anyone.
Tomorrow I found out the results from my bronchoscopy 😁. Hoping and praying that all is clear.
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Carrie it always shocks me how many of us have been badly treated or misdiagnosed by our medical system. I had to fight to get scans done and it's been six months since my last one. Now the fight starts again. Sometimes I think they are trying to save on resources because hey your stage four...let's use this for some folks that we can actually help. I may be wrong and I sure hope so but Marian demand it loud and clear.
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Thanks BeachLife. Saw the psychiatrist on Tuesday and she says I may have caregiver burnout and borderline depression. I think I'm entitled to those! I will read the articel.
DL
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Carrie61: I am sorry to hear about your story. When we are dealing with BC, we expect to be heard, cared about and communicated about our options in a timely fashion, but this does not happen sometimes, and it means added stress and possibly different outcomes. Short of resources is understandable, but indifference in attitude is hurtful. One comment on my breast ultrasound reads something like: refused mammo (due to dense breast), u/s is not for screening, the patient should pay by herself. My GP would not order any test, even said there is noscientific proof that Vitamin D would help. Do you mind if I ask you which naturopath oncologist you see, and if you like him/her? You can PM me if you prefer.
DeltaLady: take care of yourself, do the things that make you happy, no matter how small they are to others.
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Thanks Carrie61 for sharing. I am sorry to hear about what happened. I'll see what I can do to act on my own behalf.
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I see Dr. Parmar from Fort Langley integrated Health, and I do recommend him. However not so sure any of the treatments I have done have helped. I do Vitamin c infusions, mistletoe toe injections, some localized hyperthermal treatments, and lots of bloodwork to make sure my levels of vit d, calcium etc. or on target. He was the one who ordered tumour marker tests and advised me to have the MRI. I do value his opinion, and it's good to know I am doing my utmost.
Today I found out that I have lymphangitic carcinomastesis, which is causing my shortness of breath. Now I have to decide if I want to do the chemo route again😖.
So as I said before, it's worth it to be proactive..
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Thanks Carrie for your response. Now you have to make more decisions and I am sorry for that.
I will be proactive in my care but do have to say that my MO has been great in her pro activeness on my behalf. I know the that some of you have been misdiagnosed or have had doctors who have not been what you expected but I think that we need to take a step backwards sometimes and realize that we are all human and that for the most part our care at BCAA centres is some of the best in North America.
Before cancer I had some health issues that turned into surgical interventions and even then I had to be assertive. I am in no way minimizing the problems that some of you have had, but I also believe that it is important for those who come here looking for support and some positive reinforcement, that we support rather than criticize at times.
Having said that, I did just come from a 3 day mindfulness retreat (silent for most of it) in the valley. A donor to BCCA allowed 17 of us to have this opportunity and I am grateful for it~~it was not just BC women and in fact there were 2 men and many different cancers but we all shared so much, even silently with a brief time for vocal sharing at the end. Bottom line~~love, compassion and kindness are some of our most important tools.
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Carrie, I just had a quick look at your diagnosis and again am so sad with this new twist. I know you are planning to go to the warm and now I am thinking that might not happen or maybe it will! Decisions again and I note that chemo might be one of the choices. Know that I am thinking of you as you work through this new WTF. Hugs to you.
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You're right Marian, I shouldn't be so quick to criticize our health care system...compared to most others our standard of care is excellent. I guess just dealing with the latest news of progression has left me feeling like everything I've done has been in vain. Cancer can be such a guessing game, and when the doctors don't know what to do I'm left with a feeling of helplessness.
Thankfully I have a strong faith, and know that all things are in Gods control...
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Marian unlike Carrie I am not so gracious. Doctors are there to help they take an oath to do so . I was raised like police officers I should trust my doctors opinion they after all had the education and make a good living because of their position in society. When I see this abused or patients poorly treated and when this results in their death I get very angry. I refuse to take a step backwards and give them the benefit of doubt. They have at their disposal the means to help I have met too many arrogant so and sos who abuse this and I will not remain silent. Which makes the good doctors all the more precious. I know it's the Canadian way to be forgiving and kind. However my life was stolen from me by an arrogant asshole who lost his first wife to breast cancer and he did not care one hoot about anyone but himself. When financial gain is the motivator people suffer has always been this way and sadly always will be. Maybe I need a meditation retreat eh? Maybe then I could forgive.. Sorry if I am being to aggressive about this these feeling run very deep for me. I have lost almost all my faith in our medical system.
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BeachLife,
That piece about the caretaker mentality paints an amazingly accurate picture of me. I've been digesting it and trying to decide how to get better control over a lifetime of harmful habits. One change might have to be dropping a toxic friend who belittles me whenever she gets a chance, but goes postal if I ever say anything to her, however innocent in my mind, that she perceives as criticism. I suppose attack is the best form of defense, but I don't believe one should have to censor everything one says to a friend. To even then find oneself in trouble much of the time makes it not seem worth the effort. Friends should be able to make mistakes, especially when unintentional, without causing WW III. Unfortunately this is her abrasive personality and I'm not the only recipient - it's the trying to please everyone aspect of my personality that gets me into trouble!
DeltaLady
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DeltaLady: I am glad you find the article useful, and thank you for letting me know! To realize there is a problem is a big step towards fixing it. Before my DX, I thought I lived a healthy life by eating lots of organic foods, vitamins, etc. It is a cliche to say that BC is such a wake up call, I have found many things that I can improve, first being mindset, positive thinking, it is also very important to stay away from toxic contacts (friends) when you are still building up your immunity. Change is not easy, but we need to do it to survive, and it has turned out a lot easier than I thought, and am a lot happier. Even though this is my first winter after BC, I am not as depressed in the greyish weather as I used to. Something has worked, my mindset, or the increased vitamin D, or the coffee enemas! Take care!
Carrie61: Thank you so much for the info on the ND, and I am very sorry about the development in your case. Considering chemo after all the Vc, hyperthermia and mistletoe must be extra hard. Everything we do helps, and trying the complimentary stuff takes a lot ofcourage. BC has a lot to do with emotions. You are entitled to how you feel, getting it out here is part of the healing. Bless you!
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Did I see somewhere that Marianne's Potluck is on Jan 9th? Ossa, can I hitch a ride with you?
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She! Send me a PM with your phone number. It got lost on my cell phone when you called. Or go back on PM's and find mine? Yes, my get-together potluck is Jan. 9 and so happy you can come this time! But please call!
Marian
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Hey everyone,
I can't believe I've never seen this thread before! I am in Coquitlam and was diagnosed with Triple Negative IDC last January. Have had nothing but fantastic care at BCCA Vancouver although I've had a few stumbling blocks along the way. You can read below the treatments I've had. I was also supposed to have radiation but had some anatomical variants that made the risk greater than the benefit, it ended up being cancelled just a couple days before starting. I also had complications with the reconstruction of my right breast after DMX and they were unable to insert the expander. I head back in Jan 13 to finally get that. Anyhow, nice to meet you all...
Kelly
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Hi ladies,
Regarding the sentinel node biopsy timing... I am a Nuclear Medicine Technologist any have performed many, many of these. It is simply a matter of scheduling. It can be done the day of, or the day before. The tiny amount of radioactivity injected can be detected in the sentinel lymph node(s) for about 2 days.
Kelly
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Hi She, nice to 'see' you again. We can definitely carpool. Hope to have a full carload Either Koska or I drive We can meet somewhere in Abbotsford and go from there. More about that closer to date Look forward to seeing everyone again.
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Bone scan yesterday~~extra pictures in right leg (really old fracture is my take) and then off to another room with a different machine for 3D of lower back. 3-5 business days for results and I am glad it is holiday time and busy so not much time to dwell. I think it is aging as CT scan for a hernia showed some degeneration in lower lumbar area. At least that is my story and I am sticking with it even though the tech did say they are looking for mets. Appt. made for Jan. 8 to see bone specialist and another bone density test~~AI's no doubt the cause of osteopenia heading for osteoporosis and probably I will be encouraged to add yet another drug; bisphosphonates. Still a CT at MSJH to be booked I think for an old nodule that I doubt has changed.
What has changed is cording and that bugs me the most. Unusual to have it worsening at this point way past mx and axillary dissection. The one that I have had over a year twinned in the summer and my PT has worked at keeping it at bay. But a really big one appeared almost overnight and leads from just below my shoulder/armpit to under the pectoral major muscle. ROM still good but I attribute that to lots of yoga. Am following a lead for a RMT on Commercial but she specializes in lymphatic drainage and I have never had any issues with lymphedema and my cording does not go down my arm or into my trunk. I left messages at MSJH for referral to my BS but no replies. Thursday I emailed my MO and she emailed back within the hour saying she had made a referral to MSJH for my my BS or a colleague and to get back to her if no response by end of the month.
That is my pre holiday whine! Happy holidays to all of you and I look forward to our get-together Jan. 9 at noon at my house. More on that later.
Marian
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Merry Christmas to all! I am looking forward to seeing many of you Jan. 9, 2016 at our get-together.
Marian
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Marian.. I am sure you are right what they are looking at is an old fracture.. I had a x-ray of my shoulder. Mets ruled out but now have calcium build up around the tendons. Back to surgeon in January. My GP figures I need surgery to remove calcium Look forward to meeting "old and new" friends on January 9
Merry Christmas to all of you, Hope you get to spend it with the people that means the most to you and that your pain and stresses will be eased in the new year
Thank you all for supporting each other It means so much, you are a wonderful group of ladies in an unfortunate situation.. I look at it as if I had not gotten BC I would not have met you
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Merry Christmas ladies and all the very best for the New Year.
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Hope everybody had an awesome Christmas and let's keep hoping that the new year will be better than this one. See you all on the 9th!!
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Wanted to wish everyone on this thread a very Happy New Year. I read all your posts and feel your joys and sadness. Let's hope the New Year brings lots of joy for everyone.
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Hi Ladies, don't post much as you know but do think of you often. I wish you all a very HEALTHY happy 2016. Enjoy your potluck on the 9th.0
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A big reminder to everyone and please pass it on! Our 2016 potluck get-together is Saturday, Jan. 9, one week from today. It will start at noon and is a potluck. I plan on making the dessert so anything else goes~~even more dessert if that is what you really want to bring! Potlucks always seem to work out no matter what we bring.
We look forward to meeting old friends and making new ones. I know some people have offered car sharing so PM's will work for that. If you do not have my address or can't remember it please PM me.
Marian
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Hello All!
Boy! a lot has happened on here since I last checked in - I'm saddened to read so many posts from newly diagnosed sisters and sorry to read about new diagnosis for others.
Marian - I'm hoping to attend your potluck lunch on Saturday Jan 9. Would you please PM your address? Thanks!
I hope to see you all (or most of you) soon!
Marie
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