2017 Diagnosed-- A Place To Share "Whats Next"
Comments
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Hey pink is my colour - glad you got an rx for the PT. Here the cancer clinic cut PT! But I was able to find one woman at the hospital in Victoria who specializes in this. She only works part time. I think most women don't get treated or they have to pay. It would be expensive as I have been going 3x a week for a month now and still need 20% more to get my full range of motion back. Do you have numbness from your surgery?
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Roaming_Star - too bad your clinic cut pt! I'm at the Fraser Valley office and they still have it. I don't need treatment but had a phone consult before & after surgery, then an in person consult where they took measurements and tested my strength & I will see them again in June & Dec but they told me to come back earlier if any problems arose. That sucks that treatment is not the same for everyone in the province.
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I worked Friday on taking apart some old stage sets so we could repurpose the wood for future projects. I got a tiny splinter in my hand at the pinky side of the palm. I finally got it out on Sunday. I think it’s infected. Of course it is in my left hand (my cancer side) so I’m freaking out. It feels warm to the touch and is an angry shade of red. And the tiny splinter has now caused a kinda big hole. Guess I’m calling the doctor tomorrow. I’m gonna need some antibiotics. I just hope I don’t have to get a tetanus shot. Ughhhhh
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Uggh. Sorry TaRenee. Better to have the doctor check it out and treat it early though.
Pinkismycolor I’m glad you got an appt. with PT. I think it’s a good idea to go to the cancer center. They will have theist experience dealing with the cording and range of motion. You will feel so much better after treatment. Congrats on the hair!
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Myofascial release is great, too. Although may be hard to find everywhere. I have a PT trained in myofascial and experienced with breast cancer. It's amazing after the PT visit how much more you can stretch, etc.
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Sorry about the infection TaRee
PInk, yes a special PT is a great idea, We don't have any around here in my small town in Ontario, would have to drive 1.25 hours to see someone. I had cording the first time with the sentinel and mx, had to work it out myself, with the alnd in December didn't have any cording- i figured it would happen as it did prior but i lucked out...phew
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pink is my colour— great news on new hair growth!
I am home from PT where she got 4 more cords to snap. These were running between elbow and wrist. Right arm is s pink and kinda tender but thrilled to say good bye to more cords
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TaRenee— hoping your infection clears up quickly!!
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I had some cording after my mastectomy in November. They ran from my armpit to my wrist. PT and at-home stretching helped and it has resolved with the exception of one large-ish cord that is visible in my armpit when I raise my arm. It does not limit my range of motion nor does it hurt. I didn't know this could come back again. I asked my PT on my last visit if I will experience this again when I have my exchange surgery. She said on the contrary, she sometimes sees cording actually get better after tissue expanders are removed.
She said there isn't much known about the what and why of cording and who gets it and who doesn't. There seems to be a big push now to research and treat cording and lymphedema since more women are surviving all of these treatments we go through and deserve to live without these conditions. Amen to that.
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That is good to hear Peachy Jeanne about more research in this area:-)
Hey moth do they have lymphedema info courses/sessions over there? Here it is a non profit organization that offers the info session. I am going to sign up for it. No sign of it yet. I heard that if your going to get it it happens for 70% of women in the first year. But that stat was from a few years ago. Maybe it has changed now?
To all my Canadian sisters - how have you found your experience through this journey in our health system?
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Roaming: My experience has been good. When the mamo showed up with lumps and microcalcifications I was given an ultrasound right away and within a week I was in for the biopsy. Once I had my diagnosis I was seeing a surgeon ten days later and into surgery within one month. Then six weeks after surgery they started the chemo and radiation was four weeks after my last chemo. I go to the Cross Cancer which is suppose to be one of the best in North America. I see out of province licence plates at the center all the time. Not sure if they're visitors or patients. I do know they take out of province patients. But, they have way too many patients coming and going there and you really have to be on top of them. Like any of us they make mistakes. The medical oncologist has now transferred my file back to the family physician. However, I do see the Radiation Oncologist for mamos every six months for the next three years. I guess now, I'll be going back for physio.
We also have the Wellsping center where patients and caregivers can go for free. It's a great facility that caters to cancer survivors and patients. You can take art classes, fitness classes, yoga, and support groups. As much as I'd like to move back to BC I think I'm better off here in Alberta. I have a friend who moved to Peachland four years ago and she's only just finally found a family doctor. Another friend moved to Penticton three years ago and she has come back to Alberta because she could never find a place to live. She moved from hotel to renting a room every six months.
I think the only other center that suppose to be better than Edmonton is in Calgary. I think people who live outside the two cities have to travel for treatments to one or the other cities.
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Yup - the PT appointment was pretty much all about lymphedema prevention & treatment. It's run by the hospital's rehabilitation services & they have a PT who has training in lymphedema. She talked to me on the phone before my surgery. There was an information session that I was supposed to attend before my surgery but I wasn't able to go to it because my surgery was done super fast (8 days after diagnosis). So the PT spoke with me by phone before & after, I had information sheets emailed to me & then the appointments. 4 weeks after surgery, 6 months and 12 months are the standard and there will be more if problems occur. They checked range of motion, looked for cording, talked about lymphedema prevention and symptoms and stressed to get in and see a PT at the earliest sign of any probs. It was a pretty thorough check & they measured my arms carefully so they can keep track of any minute changes.
I'm early on in treatment so it's hard for me to say what I think. My GP was excellent and extremely proactive about getting me in quickly not just to see her but all her referrals. I know she personally spent time literally calling surgeons' office and seeing who had OR time as she wanted me seen fast; same for the biopsies - she called several hospitals around here to see who would do it quickly. I really like my surgeon - he is young, well trained (did a surgical oncology fellowship in the US) and responds quickly to emails.
I only met my oncologist a couple weeks ago though so I'm just starting that whole phase. I like that it's a team approach and that they have the province-wide evidence-based guidelines. Most of the physicians are associated with UBC and doing world class research so I feel confident about what they're saying.0 -
Hello everyone. I was diagnosed in Oct 2017, surgery in November, luckily no chemo, Radiation the whole month of January. I'm in the healing phase and will begin Arimidex in about 2 weeks. It seems like a whirlwind and I'm trying to live in the present and not chase rabbits. This site has been very helpful. I think people get tired of hearing about the cancer.... But this is such a good place to get advice, encourage each other and sometimes just vent. I enjoy reading all the posts
I'm going to my first regular yoga class tonight in a long time. I'm excited to start to slowly get back into an exercise routine again. I've been walking but that just isn't enough for me. I was thinking yoga would be a good start because you only do what you can and I can always go back to child's pose if it's too much.
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smwusaf- wow, you got right thru your treatments. That is great.
Yoga sounds good on so many levels. Keeping stretched and moving is so important after all we have been through. Hope you have a good class tonight
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I miss my yoga class. I had a nice small group of ladies I went with. Then the instructor stopped her classes and we don’t have anyone else here. I mean, I could go somewhere, but like my doctors... it would be 45 min to an hour away. I just don’t want to do that during the week. And on the weekend all I really want to do is rest. I’m trying to find a good dvd (if anyone has a suggestion).
The infection in my hand seems a bit better tonight. Pretty sure that it popped out the end of the splinter this morning. It finally feels a bit better, and not as big of a bump to it. It’s not hot like it was yesterday either. It’s very bruised now (most likely from all the pushing and pinching to get the dang thing out) but at least they don’t think I need antibiotics or a tetanus shot. (Whew!)
In other news, tomorrow is Wednesday. Halfway through the week. Thank goodness. I’m tired
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Sent you a PM about Charlotte/yoga stuff as I've been getting back into it, too, since diagnosis.
TaRenee: I'm sure there are good options online, if you can access through your TV. I wonder if there are Yoga/Cancer DVDs as well on Amazon. You could try that.
Nameste, ladies!
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for yoga I really recommend www.doyogawithme.com
filmed almost always in the beautiful west coast of BC, tons of different classes including a set of beginner ones so you can learn the poses first. Very high quality instruction and produced well with good sound etc.
And they're free if that's all you can afford or you can donate or buy a subscription to download the videos. I usually stick to the classes by David Procyshyn (one of the founders) but there is something there for everyone.0 -
Yoga was good last night. It was a deep stretching class. All in passive poses held for a long time. It felt good. I did have to adjust once because my chest is too tight to stretch my left arm to the floor, lying on my back with my knees twisted to the right. But I know I'll get there, I just need to give my body time and be kind to myself.
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yoga sounds like fun. I am a bit bummed as I was turned down for the clinical trial. Something about being 2 weeks past a date. The date based on day of diagnosis. Oh well I tried. Thank you dodger girl for sharing.
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Thanks, Moth, for the yoga link! It looks great.
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annbee- so sorry... I could get rejected due to blood sugar. Will see when my blood is tested next month. The Everolimus is known to really raise blood sugar and cholesterol so if numbers are on the high side of a normal range, you may not be cleared for the trial.
Hope school is going good for you. I am sure 2nd graders are full of energy.
Are you taking tamoxifen or an AI?
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I was surprised by a 2 week date thing. I hope you pass the blood test. I really wanted to throw everything at this. School is good. Field trip tomorrow. Yeah. I am very tired come Friday’s. All good. I take AI. Letrozole. It hasn’t been bad, unless it is causing the fatigue. I tried another before and it was awful. Barely could move or get out of the bed.0
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Annbee, I couldn't get into a trial because of being past one year of diagnosis. I'm pretty bummed out about it
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OCDAmy— my original dx date is March. I think I need to call the research nurse to see if I need to get the blood test now instead of waiting until after my next surgery.
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Annbee—. I have been on Anastrozole for almost a month. I think I have had 2 nights where I had a hot flash, making it hard to go back to sleep, felt a couple of times like I might have a leg cramp but never got the cramp, and my joints are a bit more tender. Assuming SEs get worse with h time?? But so far, very doable
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I had my last chemo yesterday! So thankful to finally be done with 6 TC. The bad part is that my liver enzymes are so high that my MO had to decrease Taxotere by 20% and Cytoxin by 25%. I have mixed feelings about not being able to throw 100% at this %#@ cancer but I just need to move forward to surgery and rads
I also was rejected for the Everolimus phase 3 trial too. I am 1 node short and/or my ONCTYPE DX is several pts under the cutoff. Again I was hoping to be more aggressive than less.
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ItsStillMe— Congrats on finishing chemo!!
Oh my, another account of someone not being accepted for a clinical trial. Man, I never considered that I could be rejected. I thought I just had to decide yes or no about signing up. Like the rest of you, I feel like I need to do everything possible to fight cancer. Glad you guys posted this info (sorry each of you was turned down) so the rest of us realize this is a real pos
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Glad you're done ItsStillMe. !!!
I was rejected for a couple trials because I am bilateral. I had completed the pretesting and signed the paperwork for one but after my BMX and finding cancer in my "clean" breast I was dropped😔 Seems like many of the trials don't like bilateral cancer. I have not specifically looked into the Everolimus trial though
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Thank you Dodgers girl! I found out about this trial on one of these threads so I’m happy to pass on the info. I’m considering asking my MO to do a Mammoprint to see if I qualify based on that.
LEGO master- Did you have to have rads on your “clean” breast after they found bilateral? Did anything about your treatment plan change? I’m having a bmx in 3 weeks and this has crossed my mind many times. It’s the whole reason I’m having a bmx
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Dodgers Girl, mine got confused because I was diagnosed at one hospital but then I moved to a different hospital after diagnosis where they asked for a sample from my pathology to review it for themselves. So they were initially using the date they received the pathology as my date of diagnosis then realized it was actually earlier. And the day I was counting as one year (the day I was called and told I had cancer) was not the day the study used. I guess they were using the day of the biopsy. So, it wouldn't hurt just to clarify all of that.
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