Canadians in British Columbia
Comments
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Marian my bone scan was on Tuesday at UBC the oncologist had the results Wednesday I was told. I got an appoint,net to discuss it for next week Thursday. Hate the waiting if I need other meds I would rather have it sooner than later. It's all pretty depressing I need to get my game on again letting it hang a little lately .
Wendy
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Marian - glad to read you were overall feeling well these days, but so sorry about the hernia repair needed....
My underarm is healing up but now have a similar patch under the breast -- oyy vey! Otherwise getting less pinky, and had good appt today with physio. Yes I saw the PG retreat with great interest -- have heard of the camp, but didn't know they did that too! But as I have a lovely cabin on a different lake that I go to quite frequently, I think I will let others take the spots. PS I think you meant to invite Stellamaris re the walking nearby! Wendy, I will be thinking of you and I can only imagine it will be a long week waiting. Hang tough.
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Wendy3 - I've been thinking of you and sending positive thoughts. The waiting is excruciating, keeping my fingers and toes crossed for you.
Marian - so sorry you have to undergo the hernia repair work. Seems like it never ends.
Phoebe - happy you are continuing to heal - it is so encouraging to know there is light at the end of the tunnel.
I am off to see the BS in an hour. My bad girl started acting up on Wednesday. All swollen up (seroma?) and the incision looks angry and is oozing. Yucch!..
Hugs to all
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Wendy, damn, I'm sorry to hear about the bad results. Keeping you in my thoughts.
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Wendy: your family doctor should be sent copies of results. One way to know your results earlier is to schedule with him/her if you are able to do so before Thurs. Hope this helps!
Have a good weekend!
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Thanks Beachlife my family doctor is in Salmon Arm the only one I was able to find here that still takes patients is unbelievably bad. I have to phone back on average at least three time after getting a referral then it's like "Oh well she filled out half the referral and forgot to send it oh well, I'll let her know" stuff like that constantly. I have been feeling that lately I need a degree in medicine to take care of myself. Because the doctors are either not really interested or just to dumb sorry but I feel this way.
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I'm thinking the same about doctors after all the errors in my husband's treatment and at least 7 errors in my BCCA charts, including sending my reports to a Doctor I have never seen. How can it take over 2 months of escalating fevers to diagnose a liver abscess? I think it's because everything is done according to "protocols" nowadays, instead of looking at and listening to the actual patient and/or the family member. Hubby's referral to home care and the request for a chat with the MO slipped under the radar in the past 2 weeks. I spent 2 weeks being furious, then got over it and decided I wasn't doing my own health any good. Your sure do have to be vigilant, though.
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Delta lady have to agree wholeheartedly with you. There are a lot of really good people I think the way it's run it faulty. Your right everything is disjointed nobody know what the other doctor is doing. You would think with the electronic age we would be able to send files and make appointment clear. I sat in the radiologist oncologists office and she said to me well we will need a new bone scan to pinpoint the laser. I said well I had one on Tuesday she was stumped had no idea and looked rather embarrassed. This wouldn't be a big deal if this only happened once it happens all the time.
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Hi Everyone - hope you all had a great or at least a portion thereof, weekend.
Wendy and DeltaLady - I hear you! When I had my surgery Feb 11, my BS asked me if I had met with the RO. When I replied in the affirmative, she asked me who it was - and when I told her, she went blank, had no idea who the RO was. But it was her office who made the appointment! Okay, that was back in December - I get it, it was a long time ago, before xmas, in a galaxy far, far away. At that appointment, the RO told me that once we had achieved clear margins, I would have 16 sessions of Rads. Done.
Scene II - Feb 26 I go for post surgery check-up (still positive margins and little islands of disease - my boob must look like the south china sea). BS says to me - Did RO talk to you about rads after mx? Well, no Missy - I never saw the RO again, because we don't have clear margins, duh!! And it was you, oh great BS, who told me, when I anxiously asked, that rads after mx was rare, and that you, yourself, had never left positive margins after mx, and it was something I should not concern myself with. Okey dokey
, sez I.So with this final path report, the BS spoke with the RO, who is now considering rads after mx, because, apparently now, all of a sudden, I'm in the "gray" area..
Way to communicate, Oncology "Team".
Keep well, everyone. Hugs
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ouch Stellamaris - just catching up ... so sorry, sounds painful
and frustrating. I had felt that with my replacement RO who was not up to speed with my info. If you do end up in grey area like I was, there is a provincial case conference [monthly I think] where a few of the best in the province review your case from the beginning and go over all your path results etc with fresh eyes, and add their input. Maybe inquire about it -- I was referred to it by my former RO [who went on mat leave], and that was what convinced me to go ahead with rads. 0 -
Phoebe - thanks for that info! I will certainly put it to good use if I am steered down that route. The good news is the BS, PS and RO have all discussed the potential effects of the rads on the DIEP, and the PS is pk with it. Actually, the BS said Vancouver is one of the few places in Canada who don't normally do rads after DIEP. They don't have a problem with it in Toronto, for example. It will all be over soon!!
Hope you are continuing to heal well -
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Stellamaris, I have been suspecting you have the same BS as I based on communication difficulties etc. esp. when the BS commented on practice in Toronto. I feel sorry for us. I also had quite an experience plus a margin issue.
Take care!
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Hello BC people
I am just wondering if any one has purchased brassica tea (licensed by John Hopkins Medical School). I am always cautious about buying online but it looks like I would have to buy from the Baltimore Tea Company as this product is not available in Canada. I really would like to try it but I am wondering if anyone knows where best to buy this. Any help would be appreciated. Thanks. Just approaching 5 years since diagnosis on April 8th (Stage 3 IDC ER/PR+ HER2-). Trying to revamp my diet .. again.
tamD
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Stellamaris - thinking of you as you enter your one week countdown to surgery:) Hope things have gone well with that 'badboob' in the meantime. I am 5 weeks post rads and my diep breast is healing very well except a light persistent tan [expected], but absolutely no other issues ... even the weird temporary 'freckles' are gone too, and my fatigue is melting away with the last bits of snow. The one lingering annoyance is my brain keeps forgetting things, [way more than usual] not unexpected either, but it better be temporary!
Marianelizabeth - thought of you when I heard about the new plans for the Arbutus corridor, which sound pretty good:) Hope you are well and your appointment was helpful. It's so nice to see the longer sunnier days. I am looking at the garden [still hibernating unlike Vancouver], but at least I can see it, and the dog is back to drinking out of her favourite place...the birdbath -- she's tall!
And spring-is-in-the-air greetings to everyone!
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Stellamaris, do please keep us posted. Yes, phoebe58, spring is here and we do live only half a block from the Arbutus corridor which should be great. I am off to the Netherlands to see old UK friends from our middle east days on Saturday. Over my 10 days I will see 6 friends. Then it is back for an incisional hernia surgery April 8. necessary but more surgery really!!?? And a month of recovery I am told with no yoga or hiking. At least I will be ready to get back at it in May so am glad for the earlier surgery.
new day I have been thinking about you too and maybe when I get back you and anamerty can come visit? Also Wendy and beach life what is the latest for each of you?
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Marian good afternoon hope you are well . So I was slated to start my clinical trial today unfortunately my body didn't adhere to the guidelines of the pharmacy company. Too much estradial in the system still to be considered menopausal . So my oncologist thinks this is from the tamoxifen I was on so now they want me to redo the blood work one more time to see if the numbers come down and if they do I do the fulvestrant ( did I spell that right?) ribilcon (that I spelled wrong for sure) study and if my numbers don't work my onc has a way of getting me the fuvestrant anyway even though it is not yet approved in Canada. So yeah my tumour markers are none existing so that's good and no progression since last scan which was only a month ago but heck I'll be happy over that. So now they figured the tamoxifen did not work on me at all. Would have been nice to know this before nine months go by. I hope everyone is doing well.
Wren how are you?
Wendy
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Phoebe:Thank you so much for letting me know about your progress. It is very encouraging news.
Marian: Wishing you a wonderful trip with much joy and laughter, as well as a speedy recovery from your hernia surgery. It does seem never ending, and I'm hoping everything will be clear sailing for you once you get through this one.
Beach Life: It was great speaking with you and I hope you continue to heal without incident.
Wendy: You have been in my thoughtsas well. So happy to hear your positive news that there has been no progression since the last scan. Every piece of positive news helps.
Wrenn: Thanks for mentioning Callanish. I had not heard about it and am glad there is an organization available that can provide an outlet and a comfort zone.
My DH took me on a mini road trip this week. It was wonderful to get out from under the stifling bc umbrella. We spent Wednesday skiing Mount Baker, and Thursday we wandered around Samish Bay. We found a delightful artisan cheese producer. Outside the facility was a small sign "free cheese tasting", so we swung the car around and in we went. Wow! Gorgeous cheeses up to 15 years old. We sampled the 2 year old cheddar, 18 month old gouda and a couple of semi-ripe cheeses flavored with fresh chive and jalapeno. I must say we splurged a little bit, but such a treat! We finished the afternoon with a surprise picnic - DH had packed the ingredients (butter, garlic, fresh chopped dill and lemon) in the cooler, as well as the frying pan, garlic crush and tongs in the backpack, lol, and we had fresh grilled pacific oysters on the beach, with the view of the San Juan islands sparkling in the sun. It was so much fun and such a lovely, caring gesture.
Sending everyone healing thoughts and best wishes.
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Wow Stella what a treat love oysters and I can't say enough about cheese. What a great guy you have to organize something like that wonderful.
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wow Stellamaris - So glad you had that experience while awaiting surgery -- what a wonderful time and thanks for sharing [wiping drool off here!]. Marianelizabeth wishing you a great visit with friends abroad before your surgery, and you will then be able to get back to yoga too . Wendy - geez -- some good news in your post, but some frustrating crap too. Nice to hear your onc seems to be going above and beyond making things happen.
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Stellamaris - thinking of you with positivity as your surgery date arrives tomorrow
Remember the first few days can be rough esp with the not standing straight, so take it easy, but then you will start to improve steadily and be so happy this is behind you. XO0 -
Phoebe - thank so much for your encouragement. I will be sooo happy when this is done !! Hugs
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Stellamaris I have been trying to stay offline while here with friends in Amsterdam but wanted to wish you well too. Keep us posted
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Thank you Marian, I certainly will Enjoy your trip!! 0
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Hi Ladies, you have all been in my thoughts and prayers, hope you are appreciating the spring. Sorry I have been running around with some anxiety unfortunately, which again reminds me of my cancer personality.
Stellamaria: It was great talking to you too! Wholeheartedly wish you a smooth surgery and recovery!
Marian: Thank you for asking! U/s & Mammo for that bump on April 12 (It takes 1.5 months to get to that point!) , and a rib X-ray that I am yet to know the scheduling after one month's waiting! However, while my family doc was on vacation, my bone den scan results came back (It was requested by my MO for possible AI after Tam). I was called to see my family doc.'s cover to discuss the results (osteoporotic range
) but the doc soon caught something he wanted to deal with right away instead of the bone issue. He sent me to various tests right away (blood, heart, lungs, ribs), more tests coming, and said he'd refer me to a specialist before Thanksgiving. I hope I am OK
. Have a great friends reunion, it would be a wonderful therapy indeed!Happy Easter everyone!
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oh Beachlife, so sorry you have to deal with more tests and the anxiety that comes with it
I will be keeping you in my thoughts and will touch base with you post op. 0 -
Hello Ladies! I am from Ontario but cannot find an active group here and saw you are all interacting with each other which is great.
@ phoebe58...what does the (FISH) mean in your DX?
Can anyone explain to me what the significant is of the ER+/PR-,HER2-??? Is this more aggressive? Does it mean it is Luminal B? My MO did not order the Oncotype test and wondered if yours did?
Did you have boosts with your radiation? I need to know very soon and just worried if to do them or not. Any sharing would be very appreciated. Thanks so much.
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hi Dorothy - we can always welcome and adopt someone from way beyond the Rockies! Which part of Ontario?
Fish is a secondary test given if the first Her2 pathology results are not completely clearcut -- it helps truly determines whether to proceed as Her 2 + or -. My understanding of the er+pr- is that it is far less common than er+pr+, but the er+ part is good news, as there are several treatment options with hormonal therapies that reduce or eliminate the estrogen fuel source in the body.....which is why I am on Letrozole. Luminal A - ductal only - vs B - ductal or lobular - classification is based on several factors..... including grade, ki67 [how fast it proliferates] rate, and spread [to lymph nodes or not] so A vs B is not just the er/pr/her status, and yes B is considered more aggressive, but again because of multiple factors. I did not have an oncotype test -- {I think it is more common in the US, as my dear friend who now lives in California kept asking me if I was getting one..:) }, but it can help determine need for chemo if the MO wants more info ... as my tumour was large they needed to do chemo first to shrink it. I did not have boosts with my radiation, and did 28 smaller dosed treatments, instead of the 16 protocol, as I was post diep surgery and it is supposed to be slightly gentler. One of the biggest lessons I have learned is that every person's BC is unique, and that is why treatment paths vary...... and boosts may be preferable for your situation. Perhaps asking on a radiation board re reason people had boosts.... or maybe RO preference. Has your RO mentioned boosts? When do you start rads?
Asking questions is always great and becoming as informed as possible - this site is a goldmine of info, and ask ask ask your health care team until you are satisfied!! Best wishes moving forward, and drop back in anytime
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Hi Phoebe! Thanks so much for replying. I hope you dont mind but I sent you a private message. I have had two different treatment plans advised at two different centers and am so confused. ;-(
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Dorothy - thanks, I just sent you a reply
Stellamaris - I hope Easter Bunny was good to you and gave you a trouble free surgery and a great new chocolate filled boob! I imagine you are still in the hospital, but hope you are getting stronger daily.
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hi Phoebe, all. I am day 3 post op and much better. Pain is manageable. Those drains - ugh! Lol. DH brought daffodils and a lava lamp to my room. Everyone just loves the lava lamp. The noob looks good and behaving like a lady. I won't know about radiation till the path report comes in. I did Dodge a bullet though. Was on the table 10.5 hours because the PS was not getting the vein to work. She said she was at the point of giving up and putting in a TE. So, I am grateful for her perseverance. What a wild ride this is! Hugs to all
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