Canadians in British Columbia
Comments
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PM sent to you Carrie. Fingers crossed for the wedding.
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Carrie, thank you for letting us know. Never ever give up hope! Focus on getting better and seeing your daughter walk down the aisle. The mind is powerful beyond our imagination. The following are excerpts of and a link to an article that explains this scientifically.
"...the heart can secrete the life saving hormones, which not only kills 95 % of cancer cells within 24 hours, but for other terminally ill also have an excellent therapeutic effect!"
"Cardiac hormones secreted by cancer cells directly kill cancer cells and inhibit DNA synthesis and growth of cancer cells to be effective, rather than accelerate cancer cells self deconstruction."
https://www.linkedin.com/pulse/scientists-opened-g...
Hope this helps!
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Oh shit, Carrie, so sorry to hear of your struggle. Huge hugs and much love and strength your way. And congrats on your daughter's upcoming wedding. Thinking of you and everyone else on here.
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I'm here, I'm here (hand waving). Thanking you all for sharing your knowledge and experiences. I was dx in October and will be having a MX in Feb with an immediate DIEP reconstruction. Going nuts with the endless waiting...0
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Hi from central BC [formerly Victoria and Vancouver]
I read you guys from time to time, and you seem like such a tight supportive group. How fabulous to have a get together. I jumped in to say Stellamaris that I was in Vancouver for my diep with immediate recon in August and I am sooooo happy I went that route. Have a look on the diep sites too for great info. Who is your surgeon?0 -
phoebe58: Good to hear you are happy with the DIEP result. This will be my 3rd surgery since dx, and I am praying I will finally be done and dusted. My plastic surgeon is Dr. Boville. I had a consult with her last week and was very impressed by her. Wishing you all the best.
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Hi Stellamaris and Phoebe58
Nice to "meet" you
Sorry you have to be here, You are in great company here. We have all had different challenges so whatever you are dealing with I am sure someone here can help you through
A friend just found out she has stage 3 stomach cancer . I so hate this disease.. They recently moved to a beautiful spot on the sunshine coast.
Carrie, how are you doing. Please let us know. I pm'd you
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Good morning ladies just wanted to check in and say hi🤗
Ossa so sorry to hear about your friend this disease is touching so many people I so hate it.
Still plugging along have a pet scan scheduled for February 12 so then I will know better how my Marajuanna therapy is doing....
Take care all and try and stay dry. I tell myself January showers brings February flowers🌹🌷🌹🌷🌹🌷
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Hi ladies, I have been thinking about this group, hope you are all keeping sunshine in your mind and heart during these rainy days. I am taking 3000 iu Vitamin D for that! I have been having some sort of pain/soreness around my node removal and lumpectomy areas respectively. The second surgery (margin revision) was done 3-4 months ago on Oct. 1, 2015, I had not felt pain for a while. Does anyone have the experience with (more) pain/soreness on raining days? Thank you!
Stellamaris: hi welcome! Sorry to hear you have had so many surgeries. Good luck and hope this IS your last one!
Wendy3: hope to hear good news about your scan. Was thinking of you while crossing the intersection in our neighbourhood. Jan show Feb flower, I like that positive thinking!
Take care everyone
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Hi to our new BC/BC sisters! Stellamaris, I wish you well with your surgery in Feb. which is not long away though I know the waiting game is not easy. Will do have chemo and and or/rads after?
Phoebe58, hope you can join us a for one of the get-togethers and I have lots of room for you to stay over. Who did you DIEP? I would the liked to have done that but have scarring from other surgeries and not enough fat/tissue with areas left. Where are you in the Interior?
I had my first Prolia S/C injection on Monday and have not noticed anything different.
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HI Ladies!
I haven't posted in this group in awhile, just finished chemo and looking to start rads mid-February. I met with my surgeon today to discuss having a prophylactic right mastectomy, which will happen in June sometime. I am amazed it can happen that fast, I was expecting fall/winter!
Anyways, I have a swimsuit question because we are planning a trip to Italy in May. So I am stuck between a rock and a hard place, in that when we go to Italy I will still have my right breast. I need a new bathing suit to deal with my left mastectomy, and was planning to put a swimform in it and be done with it. I am realizing these are not cheap bikinis, and while I have extended medical that will pay for it, I hesitate to spend that much when I probably won't use it after my right breast is gone, as I plan to go flat almost always. I don't know that a bikini fit for a B cup breast would look good or even work going flat. Does anyone have any thoughts or ideas? I would love to go the "sports bra" style of bikini, as that would give me the most coverage over my scars, which would look fine going flat, but while I still have the right boob? I just don't know what to do.
Thanks for any thoughts you may have for me!
Kim
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Hi Stellamaris -- I had met Dr Boville when she filled in briefly for a followup when my surgeon Dr Sheina Macadam took a little well deserved vacation in August after my diep, and chatted with her again at the BRA event at VGH in October, where I was one of the diep models. I had wanted to pay it forward, and it was a great event. You are in good hands, and am wishing you the best next month.
Marianelizabeth, I am really happy with Dr Macadam, and see her again mid Feb when I finish rads, as she wants to see how my lovely new boob tolerated rads [swelling and achy but otherwise ok so far -- named it Pufferfish], and plan how she can fix anything and do stage 2 in the fall. I now live in PG, but I still have close friends in Vancouver and Victoria from my years there. What a nice offer. I just might try to drop by and say hi at a future get together!
Hi back Ossa, thanks......... so sorry about your friend.
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phoebe58, Dr. Lennox is my PS and I am on a wait-list for an exchange of implants as I am not happy with my Allergen 410's which are hard and cold. But I now have a capsular contracture and got an appt. March 2 with him. I am going to try to diplomatically ask if he will try to get me in to see Sheina MacAdams. I could have picked her at the beginning but it was kind of 6 of one.... But now he is head of plastic surgery in Vancouver which means he has little time other than cosmetic surgery these days. But, one thing at a time and I saw an RMT last week recommended by Sneaky Chiquita and see her again Monday.
Simmer, I understand the bathing suit issue. I bought 2 of the $$ ones in Calgary at a breast cancer specialty store just before my exchange because I was going to the Caribbean soon after. I bought a beautiful one piece which did not fit at all later and gave that to a friend. The other is great, a bright coloured tankini and I would be happy to lend it to you for your trip if it fits.
I would also love to give away the $$$ bras I bought for post op exchange as they did not fit. Brand new and would love to pass them on.
Marian
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marianelizabeth, thank you for the offer! Could you send a picture of it and let me know what size it is? After thinking about it more, I could just continue to use a bikini top that I purchase, and buy a 2nd swimform for it and resign myself to always having use the swimforms and always be a B cup when I swim. But I would also like the freedom to not have to always have the forms, to pack them, etc. Sigh.
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If you decide you want to see it send me a PM and I will send you a photo. Size 8.
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marian - As you likely know Drs Lennox and Macadam share an office, and as I understand he had initially brought her in! A colleague of a close friend in Vancouver had implant reconstruction done about two years ago with Dr Lennox and was very happy. She said Dr Macadam prefers the diep when possible. It is a long surgery --mine was 11 hours but I bounced back well, so I can see why Dr L backed away from that. Dr M does implants too, so depending on what you plan to do, I think they are both great surgeons. It doesn't hurt to ask for an opinion from Dr M, as she will be able to assess if a diep might be possible for you. If there is a way she will find it. I hear you re the cold and hard
-- never had implants, but appreciate that my little transplanted tummy pooch is warm and jiggly soft.0 -
Phoebe, no chance for a DIEP, no matter who the surgeon and it certainly was a discussion point when i first saw him and also an Irish fellow who was there with him at the time. I suspect I have written about it some posts back. I have several scars from previous surgeries not to mention I have no fat/tissue to spare other than for some more fat grafting. Dr. Lennox is a great surgeon, don't get me wrong. And yes he did bring MacAdam in and had her go off to do training in the US just as he did. But he is head of plastics for VGH/UBC now and so is way busy. That is the only reason I might ask him about Sheina.
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Thanks everyone for your feedback. Question - do you know if it is standard procedure to biopsy the tissue taken from the "good" breast after a reduction? Just wondering if this is a specific question I should ask, given that ILC (mine anyway), has not shown up on MRI and mammo....0
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\stellamaris My reduction side was biopsied \I was told this was standard procedure
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Ossa - thanks! That is reassuring
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Stellamaris -- I had a prophylactic bilateral mastectomy, and yes they did do routine sampling of my breast tissue and nipple on the 'good side'.... that turned out surprisingly to have DCIS scattered throughout, so was very glad to have done both sides! I needed to get the nipple removed on the good side two weeks after my main diep surgery, as it had originally been nipple sparing on that 'no longer so good side'. I have same unusual ILC er+pr- as you, and final path results showed also some ductal mixed in with the ILC.
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@Phoebe58: thanks for the info - feeling better now, although really praying for a 'good' side (I only have enough tissue for DIEP on one side lol)
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Hi everyone. The Mount St. Joseph Rapid Access Breast Clinic (oxymoron) let me know today that my UMX has been moved out to March 24th. Is that normal to keep someone waiting 5 months for final surgery? My BS said if I chose direct to implant she could do the surgery Jan 26. I saw the PS on Jan 13, and she recommended a DIEP flap. She said she could do it Feb 11. I don't know if communications between the two offices was messed up somehow, but apparently my BS could not make Feb 11 work. I am completely in shock.
Marianelizabeth: I will not have chemo based on the recommendation of my MO, who feels it is not effective for ILC (my Oncotype score was 27). It is unlikely I will have RT, as my BS said it will not be necessary after a MX, because it is very rare in her opinion, that her MX will leave any unclear margins. The only therapy I will be on is Letrozole for 5 years. Frankly at this point I have very little faith in this team. I'm going to my family doctor next week for a referral to another doctor. I want a second opinion. My BS and MO have been cold and uncommunicative from the start, and are always pushing their own agenda. I am very disappointed in the care I have received at this clinic.0 -
Stellamaris - I had to wait much of last summer for my diep date, due to a perfect storm of coordinating staff summer holidays, the fact that diep takes so much surgical time, so only a couple of openings per month at VGH, and yet I felt they really hustled to try and get it done in a timely fashion. In fact, my BS ended up adjusting her vacation time. I really liked her. Yet, I am one of the unlucky ones who ended up with sketchy margins after a full mastectomy........ I blame it on the nature of my large ILC tumour which had extensive thin lacy fern fronds that are very challenging to see. They also worried that some little frond was too close to my chest wall for comfort...... hence the need for radiation. I am at least relieved that I am not having an implant irradiated, which leads to more complications from contractions. My PS is confident she can fix up whatever rads may do to my diep breast. As for your anxiety re wait time, remember that you have Letrozole in your corner that is helping to shrink, or at the very least suspend, further tumour activity while you wait.
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PS Stellamaris, sending you a hug for the angst involved in getting a date, feeling uncertain re your team. It sucks.
I think everyone has agendas and it's good to recognize that, and they differ philosophically: in my observations, BSs in general prefer the shorter surgery times as they can maximize their time and earnings better, and PSs prefer to offer the best available outcome option, if they have the time and wish to practice their skill set. My BS initially thought I would do fine with an implant, but easily got on board and was supportive when I explained my preferences.0 -
Everyone: thank you so much for your feedback. I was able to have a meaningful discussion with my BS yesterday. Based on that conversation, I proposed that I try another re-excision to clear the margins before the March 24th MX date,. They will hold the March 24th date until the path report comes back. If it is successful, I will proceed to RT. If not, I will proceed to the MX. They have agreed to that, so Feb 11 will be the next and hopefully final, lumpectomy. Fingers crossed.
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stellasmaris so glad you and BS had a good conversation. My BS at MSJH is Carol Dingee and she is what I call different but an amazing surgeon. The other one I know of who is also highly respected is Dr. Kusk but I believe there is a new surgeon (s) there now? I saw Dr. Dingee recently with my cording and capsular contracture but she said see Dr. Lennox, my PS. I will see him March 1 but meanwhile thanks to Sneakychiquita, I am seeing an RMT who actually in 2 sessions has pretty much eliminated the biggest contracture~~now we see abut the cords. Dr. Dingee for those who know her, has gone kind of hip with still dyed black hair but white at top and very cool short black skirt and tights. I completed her hair as it looked so cool!
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Does anyone have a good family doctor you can recommend? My previous two amazing family doctors retired one after another. My current family doctor works part time, and does not know the system well--did not give me any referral, does not know anyone on my BC team, does not even think Vitamin D is necessary for BC. I was really on my own. Thanks
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My BS was Dr Kuusk, and I felt very comfortable with her. Happy to hear the RMT is helping with your discomfort and challenges marianelizabeth.... they can do wonders. Glad to hear you have a great plan now that you are comfortable with stellamaris - way to go! I have only 4 rads left -- pink and tight, but not too bad really, then return to Van to see my PS.
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phoebe, let me know when you are coming and we can try to meet up. Am hoping stellamaris has one of our BS's.
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