Canadians in British Columbia
Comments
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Gardengirl66,
I met with RO Dr Balkwill and MO Dr Davidson at Surrey BCCA and I found both to be OK. On one hand, Dr Balkwill said that mine was DCIS so didn't think I needed any radiation and on the other hand, she goes to say that mine was negative for all the hormones, had a high grade which means that the likelihood of it coming back was high and would be aggressive. She also said my case was "controversial" because I had ITC which is isolated tumor cells but they suggested a 'wait and see'. They also wanted to discharge me from BCCA care and to just follow up with my GP. I had to fight to have my follow ups done with BCCA and so Dr Davidson is the person I see every 6 months. I feel that they don't really take me seriously and is only 'appeasing' me because I didn't feel that my GP would know what to look for since I've had a BMX and she thought I had a cyst when I first told her that I felt something in my right breast. She didn't seem concerned because my mammogram had come back normal.
It's a crap shoot for me and I feel like I'm the only person that is concerned about myself. Every time I have an appt with BCCA, they always bump me. The last 2 appts I've been bumped. My next appt was supposed to be Dec 31, and it has now been bumped again to Feb 24.
So frustrating.
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thank you for the response and info.Had my ultrasound today, next is my biopsy...which is what I was expecting. Just weird was doing the exact same stuff this time last year,....hopefully this time not positive for cancer .
Allyp71 It is funny (not) to hear about how some of your appointments have been . Ever since I have been released from the chemo center at Lionsgate, I have had one appointment where they forgot about me..after checking in , sat for over an hour , for them to say who are you and oh sorry we forgot about you....sitting right in front of the reception . I have not had a physical since being released from rads. I have been seeing Sasha Smiljanic for my oncologist....I get the feeling he is either tired or bored by the time I get to see him. I too have been bumped, which I get, there are more serious cases than me, but when I have my time I would like him to be a little more interested in my concerns .I agree with the frustration Allyp.
Mouser, so sorry to hear how things have been going for , that must be so hard for you. I do not have any info you , but sending positive thoughts your way and will be thinking of you. Wish there was more I can do to help , big gentle hugs to you !
Thanks for info on oncologist , will keep you posted .
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I had Dr Balkwill 7 years ago and did not like her. I thought she was horrible to deal with and she never wanted to answer my questions. Luckily i also had a medical oncologist, I saw Dr Pansegrau, who was most awesome. Any concerns I had he answered and still does. In fact, another lady from here had Balkwill too and didn't like her.
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Ladies as I read through your threads on treatment and stuff and being concerned about released from the cancer agency and not taken serisously, please know that some of us have felt that way too. Unfortunately you really have to advocate for your own care and really demand that you need to see someone. hugs...Kosh
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hey Marianne! cool! it looks like you had a great trip as I have been following your photos!!!!!
keep me posted if you need anything. I will be checking my messages while i'm in Maui
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hi!!! All the new ladies here.... We are having a potluck on Nov 22nd, Saturday, in Vancouver at Marianne's house. Please post if you are interested and we will message the details!!!
We did this last year.... Most of us had never met in person... We had such a great afternoon! We had ladies from all over BC manage to make it !! Here's a photo
... So please come!!!!!
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And please invite any friends too as they don't have to be on BCO. I invited a fellow yoga student today who is having more recon done by Shaina MacAdam in December and she is looking forward to meeting new BC friends too.
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I would love to meet everyone, should be available,the only possible conflict would be my son's soccer game.... So count me in...if anyone needs a ride from the north shore, let me know .
A great photo of everyone!
Thanks
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For the potluck, I sent out an email today to everyone from last year's list as well as some who let me know they would like to come. If you think I missed you or would like to come but not on that list please send me a PM for details. Nov. 22 at noon.
Marian0 -
see you all the 22nd
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Hello all you beautiful BC women with BC. I'm newly diagnosed and just starting my journey of appointments, second opinions, more appointments and more opinions. It's overwhelming at times - I'm very analytical, and making decisions in the face of the rather conservative BCCA protocols is causing some sleepless nights. I'm learning a lot from reading these posts - thank you for helping me feel somewhat sane!
Anyone here a member of Inspire Health? I just joined and hope they can help me wade through the oceans of info coming my way.
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Hi DiZoe,
Sorry you've had to join us, but welcome, nonetheless. I didn't go through Inspire Health, but I've come across a couple of people who have and who seemed to benefit from it. I see that you've just recently had a lumpectomy. Is radiation up next? And if you live within the area, consider coming to the potluck at Marian's in Vancouver on the 22nd.
Glad to see you're still planning on attending the potluck, Ossa. Was hoping to get another look of that fipple, lol.
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DiZoe... as Sneaky said sorry you have to be here, but glad you found us.. Joining us for our get together Nov 22???
Sneaky you can deff have another look at the fipple, though it will not be pretty.. I imagine a lot of bruising around area as I have my revision the 17
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Garden girl...I can highly recommend Dr. Klimo, he has an office in West Vancouver and I commute all the way from Langley. I had an oncologist in Abbotsford but she was not supportive at all with my complementary therapies. I am much happier with Dr. Klimo, he has a lot of years of experience behind him and a very positive outlook. I see him every 3 months and he stays on top of my bloodwork monthly.
Ossie, when is this get together? if I am home I would be interested in meeting you all...
Carrie.
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Carrie61
Nov 22 qt noon. It is in Vancouver at Marians I am car pooling with Koshka0 -
Ossa and Koshka, Carrie has sent me a PM but maybe you can all discuss car pooling and share contacts.
DiZoe, hope to see you on the 22nd!
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hi Dizoe....
pleaese continue to reach out to us. we can help you navigate through all of this.
as well, it looks like you and i had close to the same diagnosis and probably treatment. if you have any specific questions about surgery, radiation, tamoxifen etc let me know. As well, Inspire Health is phenomenal to deal with. It is always good to have a healthy alternative to the unhealthy side effects of our treatment.
I hope you will join our potluck, we had such a good time last year. We all need each other
hugs Kosh
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Hello ladies,
I haven't been posting lately but I would love to join you for the potluck on the 22 nd of November. I'm presently out of town in Arizona ( celebrating my last Herceptin treatment 09/24) . I'm planning to be back home on Nov 20th. I'm looking forward to meeting you all. Hugs to everyone!
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Dizoe, welcome ,but sorry you are here. This site has been very valuable to me this past year...it was my surgeon that recommended it.
Carrie, I had thought of Dr. Klimo, Sasha Smiljanic does work with him. My family doctor has been great through all of this.
I am on penicillin for the past week , mammo , ultrasound done , going for a biopsy tomorrow. We are thinking it is lymphdema and Cellulitist . My first time with either, everything is a little rushed as we fly to Los Angeles on Thursday , the one year treat/ anniversary of when diagnosed. Here I am doing it all again . I am thinking the pencillian is starting to work, weird (to me) that Cellulitist and IBC have the same characteristics. The only way to find out is a biopsy ..... So tomorrow will get that done.
Thanks for the info , I appreciate it.
Looking forward to meeting everyone !
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oh Gardengirl, glad you are getting the biopsy done right away and then you will have peace of mind that it is in fact nothing terrible and can hopefully go away and have fun.
Annecy, glad to hear you are coming. Send me a PM and I will send you details.
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gardengirl... do you have a sleeve and glove for flying? if it turns out to be lymphedema I would highly recommend using them when flying.. makes life easier0 -
hi Marian, I have one ordered, hopefully ready on Wednesday for pickup.... It is going to be crazy the next couple days ....thank goodness my kids have a pro d. Day tomorrow. Hoping it all falls into place. My arm ...so far is not swollen...hoping to keep it that way. Thanks for asking
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Fingers crossed that all you need is some penicillin to get through this, Gardengirl!
I like reading that another person is chiming in to say she's planning on attending the potluck every time I check in here. Hoping the weather is nice that day so I can ride my bike there and enjoy some wine while we're together. I rarely drink these days that I'll be tipsy after 1 glass… and I plan on drinking more than one
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Biopsy done, five little clicks later, the doctor told me there was an irregular mass and two small cysts..... So the two week wait , will have to keep myself busy.
Thanks Sneaky, hoping it all goes smoothly, have a renewal for more pencillian . The doctor did warn me that if anything happens concerning my breast , lymphodema etc. I will not be covered with my insurance. So I will plan for the worst and hope for the best....and hope to have some fun in L.A.
Sneaky , you gave me a laugh about how quickly wine hits you ....same here....one beer or a glass of wine ....I tell my DH that I am a cheap date now.
Looking forward to Nov. 22 and meeting everyone ....thanks and hugs to all !
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I think I have replied to all PM's but if not, remind me! Address, phone number, that we are having a Secret Santa ornament exchange max $10-15, not sure if I remembered to say all those things....
Looking forward to meeting new people and seeing old friends!
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I didn't realize I wouldn't be notified when someone posted after me - just logged in to do some reading and voila! So many wonderful messages! Thank you for such a warm welcome. I have an event late afternoon on the 22nd but might be able to pop by for a short time.
Thank you for asking about where I am with treatment...here goes...
I've seen my medical oncologist (Dr. Villa) and he's ordered an oncoscore (sp? ) test and a BRCA genetic test. I'm of Ashkenazi Jewish descent but was adopted so no family history. I just can't reconcile that I'll have to wait months for the results and in the meantime have another surgery Dec 1 to clean up my margins, start tamoxifen, and then do radiation. To me, knowing whether I'm BRCA+ would have a big impact on the type of approach I take. Or maybe I'm missing something?
I'm getting a 2nd opinion on everything from Dr.Sasha and will see a physician at Inspire Health too...I have also been working with Dr. Anita Tannis, an MD who does integrative medicine, for hormone issues. She is amazing and has changed my life with natural progesterone. Because I'm much more inclined to use natural therapies and am extremely hormone sensitive, the idea of tamoxifen is making me very anxious and I'm hoping to find workable alternatives.
After unsuccessfully trying to get me to stop the natural progesterone, Dr. Villa finally admitted there is no research proving that it is harmful for PR+ cancer and said that it is actually protective against estrogen - BCCA just likes to be cautious. Hmmm.
This gives me a headache.
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Mouser, I really hope you will come back here so that I can connect with you. I live in Port Alberni too, and we can meet up for coffee any time to talk, and get acquainted. Will be lovely to meet you! Going to PM you anyway.
I'm not on the threads much these days, and life is pretty much back to normal. Will not be coming to the get together, because I will be visiting my grandchild that weekend. It was so nice to meet all the ladies last year at Marian's house.
Ossa, you will be pleased to know that you have inspired me to also get a 3D nipple tattoo - will happen in February 2015. Still can't believe what you showed me that day! I had DIEP flap recon in 2013, and nipple surgery in April this year, but the nipple is really flat, and a 3D tattoo will be the final cherry on the cake, so to speak. Lol.
All the best to all you ladies, and have a blast on Nov. 22nd!
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will miss you liefie It was great meeting you last year.. maybe next year??? I am glad you are getting a 3D It still amazes me even though it has faded somewhat.. I will have some touch ups done after my revision surgery and healing time. Enjoy your grandchild aren't they the best Love love being a gramma.. I am lucky enough to have three now.
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My sister was diagnosed with stage 0 or 1 breast cancer, only a 9mm in right breast. Tested positive after biopsy, and MRI. We were sent to a general surgeon first (Dr. Lewis in North Van), and we asked for 2nd opinion and went to an oncologist at VGH, called Dr. Davis. We didn't like her bed manners, but we'd like to know if surgery (luptoctomy) MUST be done by oncologist or not? and if so, who's recommended in Vancouver?We're also referred to BCCA for 2nd biopsy and further opinion.
Any help is appreciated...
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To my knowledge lumpectomies are always done by a surgeon, usually a general surgeon though many of us have general surgeons who specialize in breast surgery. My BS was Dr. Carol Dingee out of Mt. St. Joseph Hospital. She is well respected and I was very happy to have her for both my lumpectomy and mastectomy. It is the lumpectomy that gives a better picture of size and grade etc.
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