Canadians in British Columbia
Comments
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Ha! Ha! I get those same looks from my family
I am either too 'wordy' or 'confusing'...oh well, we often have a great chuckle (at my expense)! Have a great weekend everyone!0 -
NVDobie that is good advice not to read about BCbefore bed. Read a novel or watch Netflix instead!
Also do arm exercises. Thanks.
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Wrenn, lol, it's me not reading right. When listening I can screw up a convo very easy also, and then when I get a reply to whom I'm talking to I'm so busy trying to decode what they are saying that I furrow my brows deep in thought. When I do this My daughter says" why do you look so mad! “ Ugh.
I'm going to attribute it to chemo brain. Actually I'm going to attribute EVERYTHING to chemo brain. I've earned the badge and now I'm going to use it as a good excuse instead of saying I was born this way! Have a great weekend all. Btw Victoria is not the only sunny place. We are beaming over here on the mainland to! Should be great sunset!
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runor, it was covered under cancer tx.
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Pat, It is not exactly that I do not like him but I feel that our relationship changed in January when I talked about a second opinion. Our meeting on Wed. was fine but perfunctory as though he is being careful. He must have some back or leg pain and I guess it is the contractor part when he says he has to pay the bills~~i.e. no medical benefits. Since I know that treatment will never be over I need/want to feel comfortable. When looking at my printout of the CT scan, he said that if Ibrancse does not work, then there is tamoxifen, extamasane, etc. Considering that we both thought the picture did not show change (report not available that day) I thought it a bit early to comment on future drugs.
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LOL Puzzles! I'm due to start on the 12 April. I'mglad your paving the way for me because my mom who is nearing a century old can put a puzzle together better than me. In fact I just watch her. Well I've mastered the borders but that's it. Ohhhh I'm going to suck at this.
Go ahead and phone them. They will think your a piece of cake compared to my calls.
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Ha, I don’t think I will qualify for the pain part, thankfully, but love puzzles of all kinds. Send them my way!
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I get my equipment set up Easter weekend. I loved the question about having to have one hand to qualify amongst the others. My right hand has given up and worsens day by day~~today my little Edith age 2.5 helped me do up my shoelaces. I am cool with it as my CT scan last week has me stable. We think that it is the final wasting or atrophy from the nerve damage. I get to take care of Edie again Thursday so we shall trade helping each other again.
I have never been good at puzzles and was told it was video games. Hmm
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Mariane. Good and yeah that CT says your stable. Well your probably the only stable person in this crazy world...so good to know you!
Isn't it so dear that a young child can bring so much joy into our life's. Everyday things we take for granted like shoe lace tying can really make us love those little ones when they help us. They have no idea of the impact they make.
Let me guess... your bum arm is your dominant arm that has lymphedema. Am I right? Ok with bum arm you might try adjusting your purse strap crossbody like so you can rest that dang arm on top of the purse kinda like a cast in a sling. Not sure if this will bring pain due to heaviness on your shoulder but you could give it a whirl. One girl with lymphedema goes walking and shopping this way, giving it a rest and not dangling it so pull of gravity is not so bad. Also pillows on your couch arm to elevate so fluid doesn't stagnate to hand. Ah the joys of dang cancer. Phooey! Hang in there gal!
On the subject of lymphedema. If one has a mini tramp. 5-10 minutes of slight bouncing. Heels not lifting is helpful to move sluggish protein rich fluid out of limbs. It doesn’t need to be a workout where you breathing heavy. It’s not that kind of exercise.
Good nite all
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Wrenn. Lol I don’t solve puzzles. That’s why my life is unsolvable!
I’m not to worried as I think the whole exercise is to distract you from pain. If I’m thinking hard enough about the puzzle this might work. I’m just going to shoot up with caffeine beforehand If allowed.
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guys, I'm so glad that several of you are able to participate in that study! I saw the posting quite by accident when I was visiting the UBC website for something else. I hope you guys get something out of it & that this leads to some developments in pain management.
I had my pre-chemo appointment with an MO today and all is well. Assuming my counts are good tomorrow, we will resume full dose on Thursday (I had a reduced dose for round 2 due to the febrile neutropenia). Only unfortunate thing is that now I've seen a different MO on every visit. First one is off on maternity, second one is away, I was supposed to see his replacement tomorrow but the replacement had a family emerg so there was a mad scramble and I saw someone else today. She apologized profusely on behalf of the agency for the lack of continuity in care but honestly I'm not really bothered about it right now. It helped that I had a pretty smooth round 2 with no major side effects and I feel really good and strong now.
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Wrenn, oh I hope not but you do have a point. Stress can make thinks more painful. How did it go today?
Moth well at least seeing different MO's will give you a choice down the road if you need to change. I guess we have to look at the bright side.
I'm hoping you can get the full chemo tomorrow. Do let us know what happens. Your practically professional at this now!
I had taxotere which is same family or maybe even the same thing as taxol (I forget)and it If you find your getting painful tingly feet and finger thenreport ASAP and they will give you a good drug to combat. My fingers were so sore I couldn't touch the zip on my pants to draw it up. Again good drugs helped tremendously.
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Hi all;
The newbie is back ; )
Just wanted to let you know I finally had my Core biopsy done this morning. Feels like relief, that momentum will pick up and I'll at least have information soon - as opposed to the torture of waiting 3 weeks.
Thank you for describing the process - I felt prepared and wasn't worried about.
Now I wait for the results and a surgery date.
HUGE Thank You to all the women who supported me, explained procedures to me, answered my questions and gave me reassurance by being there.
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Boo, platelets still too low so I'm delayed by another week & will only get 75% again. I'm still hopeful that the chemo is actually working on the cancer - because it darned well is working on my bone marrow! - but, still, this kinda sucks. (I actually found a study done at BCCA which showed no statistical change in outcomes among patients who had delays or dose reductions that was kind of reassuring)
Lol about meeting all the oncologists! Yup, I'm getting to know everyone!
BlueSky - yay you! Biopsy done! Fingers crossed for super quick results & still hoping for you that you will the be the one whose birads were wrong & the biopsy comes back benign!!!0 -
blue. Your Breathing a sigh of relief that core is done for sure! Now get ready to take another breath for next hurdle. Keep us posted. Are you doing mentally ok otherwise?
Oh dear Moth, but at least your probably feeling better since last chemo. I remember week one was awful, week two I was starting to live and get energy then chemo date approached fast and spoiled it again for me. Chug chug chug moving your engine forward! You'll get done.
Ok well I usually don't like stats but this one works in your favour soI'll buy it! Ha.
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So sorry Moth that your chemo is delayed. It does sound like something is working for sure but I bet you want to get it over with. My friend just had her last chemo treatment and is off to Tofino for the weekend to celebrate.
Glad the biopsy is over Blue Sky and I hope that your results will be better than expected.
Speaking of blue, my breast is still blue from the node mapping - over 3 weeks post op now. My surgeon said we should wait until the colour disappears before rads or it will be permanent 😐. I would like to get the rads over with but haven't even got a RO referral yet. Anyone know how long the blue might last?
My breast looks like a rainbow with yellow bruising and blue dye around the nipple! 🌈
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Hi, ladies
Has your oncologist ordered PET or CT or MRI during or after the treatment to rule out any suspects?
I have come cross a few posts here where patient were diagnosed and treated with early stage 2A or 2B with no nodes involvement but the diseases came back metastasized. Stats says early stage BC has 30% of Chance to metastasize. Big number http://www.breastcancer.org/symptoms/types/recur_metast/definitions
My oncologist seems not interested in any additional tests for possibility of false positive, but want to know I am doing everything I can to rule out any suspects that wasn’t revealed on mammogram or ultrasound at first Dx.
Should I wait for chemo and radiation to finish before thinking asking my GP for a PET referral or things like that?
Would really appreciate any experience and insights here.
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NVDobie - My MO was not planning on any scans as he felt my treatments were sufficient - NOT! Soo because I am one who likes to be sure of things I had asked my GP if she could request a ct scan, and she can! This is in Alberta. As it turned out I developed pneumonia (a long story) which warranted a ct scan which showed possible 'activity' and lo and behold Stage IV
So there I was exactly one year after my first MO meeting, meeting him once again to discuss options for 'controlling' my MBC...Therefore my suggestion is ask your general doctor if your MO will not request one...0 -
Thanks, wrenn.
A through oncologist is always better than an overconfident one. Mine is head of BC Breast Cancer program so he is on the confident side but this is my life so I want to drive the decision if needs to be.
Janky
Thanks for sharing your experience. When did you do the CT? After chemo and radiation?
Any idea which is better test for us? Between CT, PET and MRI?
American ladies seems to have all sorts of tests given they are not on Public health care.
Here we have to plead at times going around MO to get test
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It was explained to me that the reason they don't usually scan is quite simple - it doesn't affect outcomes. That's the harsh truth of it. Finding out 'earlier' vs. when you present with symptoms of metastases doesn't seem to make any difference & this is why they can't justify spending on it.
There are private CT and PET scan places in the Lower Mainland. I know of a PET scan in Burnaby that runs around $4500 if you really want to do it.
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Yes Moth. The outcome is the same and knowing very early does not extend one’s life. I know it’s hard to wrap your head around NVdobie but, as was my case, it could be many, many years before you have detectable symptoms. It was almost 16 years between my original diagnosis and my recurrence. It’s probably unlikely that a scan would have shown anything but I clearly had a few cells that were sitting, waiting. But let’s say it did show something. I would have spent all that time imagining my imminent demise instead of just living my life. Even now, I don’t have a best before stamp on my forehead so keep on trucking (working full time, renovating my house, etc.)
My advice? Be confident that you did everything you could to fight this (and continue to if you are on hormone therapy) and embrace life. And remember, 70% don’t recur. That’s pretty good odds!
Hugs. Pat.
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NVDobie - I had finished treatment: chemo in April 2017, radiation June 27, then caught the pneumonia in November. I had planned to look into requesting a scan in the new year - instead the new year brought a bone biopsy, contrast bone and ct scans and the MBC diagnosis. I would be interested in knowing which scan would be the best.
moth - that is what they said to me as well, my concern is that the sooner mbc is discovered, the sooner treatment begins.
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I was DX stage 2B (one tiny micromet in 1/12 nodes) in 2012. I had an MRI of my chest and abdomen before I even did surgery. So we knew it hadn’t spread back then.
I did several bone, CTs and X-rays to rule out recurrences when I had symptoms that were worrisome for 2-4 years post chemo and post radiation. All ruled out mets.
But then I stopped hormone therapy after 4.5 years to become pregnant and developed a tiny cough within 5 months. CT scan found mediastinal node mets and small nodule in lung. 5.5 years after my early stage diagnosis it was back.
I was told same about outcome not changing whether we scan or not. But there are women with oligomets (defined as less than 5 spots in one organ) who do very well and live 10-15+ years. So I disagree. Finding it early CAN mean longer life.
Sometimes we just have to push if we think something is up. But somehow maintain living life as if stage IV isn’t going to happen. I reached that point of being bored by the fear of it. But sadly it happened anyway for me.
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Thanks for everyone's input and sharing your experience.
I am having hard time to wrap my head around the idea that knowing it earlier will not make an difference. Without any intervention when it first met's, won't it continue to allow the cancel cells to develop and potentially impact other organs?
Ashlyn
Did your doc explain why your scan at 4 yr mark showed nothing things are discovered 10 month later ? Was hormone therapy discontinuation an factor? You were only 5 months short of standard 5 yrs.
I agree with you on pushing care for ourselves. No one will care more than we do. I am going to wait for chemo to wrap up and then ask my GP for an CT or PET scan. I also recently found liver cyst so i want to monitor that as well.
We are here to support you however you need. I know Doc have their mind set on prognosis but sometimes defiance happen, outliers happen. To doc's, it is game of statistics, to us, it is a fight to beat the odds and be the outliers to our advantages.
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NVDobie: I feel you on wanting to stay one step ahead of the disease. That’s how I felt too. I asked about a CT after chemo but ultimately I felt it was unnecessary. It wasn’t until about 9 months after that we did a bone scan. The pains we’re a result of Tamoxifen though.
For me stopping treatment “woke up” cells that were always there just waiting to grow again. They were just not active or visible on a scan. Some disease will stay at bay on AIs and Tamoxifen and then return after completion. And others reoccur while on hormone therapy. Which did not happen in my case and was a good thing because it means I’m back on an AI and it’s working with Ibrance.
My MO explained that if the cancer was going to come Back, it would eventually anyway no matter how much hormone therapy. For me hormone therapy was working and keeping me NED but it was always going to return. We just didn’t know it.
I know many others who have stopped Hormone therapy early to have babies or refused it all together and are still disease free 5-7 years out.
There are also theories that breast cancer seeds itself into organs before the primary breast tumor is even discovered.
We just don’t know. All we can do is our best to find a balance with life after treatment.
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Janky, Ashlyn and Sadieservant, thank you for sharing your experience.
It's true that American women seem to get more scans and monitoring (if they can afford it or if they have the right insurance). Although past studies may not have shown better outcomes with more testing, those studies were done with old technology that is not as precise as modern equipment. Metastatic cancer is more responsive to treatment if it has only spread in a limited way and it makes sense that high tech imaging might find it earlier, though not always.
Another factor in the US is the frequency of lawsuits for undiagnosed cancer, which encourages doctors to be very thorough with testing. They also seem to do many more mastectomies than we do in Canada, even for DCIS.
It's a complex topic, but surely it is better to diagnose earlier if there is a treatment available.
I have a 50% chance of inheriting a brain disease that both my mother and grandmother died of. Since there is no available treatment, I have never wanted to take the genetic test. I try to put the risk out of my mind. At least with BC there are treatments to prolong life.
Bottom line, we need more research and treatments to help Stage IV women.
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Thanks DearLife.
It is an interesting topic. In my case, I was in treatment for 8 years when one considers the original chemo, rads, Tamoxifen and the the AI. I did have one or two scans when there were odd symptoms but nothing ever came if this. Then, clearly, sometime in the next 7 years, cells in my lung started to grow. I was diagnosed as Stage IV due to a right pleural effusion. While I was initially considered 2a, there were always some concerning features - significant vascular and lymphatic invasion and my age at diagnosis.
I completely understand the desire to monitor after you finish treatment. I felt exactly the same way. However, now that I am in this place where I am considered incurable I can’t honestly say that I feel my life has in any way been shortened by not finding the recurrence earlier. I’m doing very well (planning a trip in May). And there are so many treatments. Each one has a finite time when it is effective but then we move on to another and, best case, we see remission.
It’s a complicated topic for a complex disease. Just want to say I get how you feel.
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Haven’t heard from mariane lately,I hope she’s ok.she must be settling in from vaca. She always has good thoughts to consider on topics such as this.
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That is the great thing about this forum, we can each feel thoughts relevant to ourselves, yet not be judged if those thoughts differ from other's perceptions
I too am planning a trip in May - Georgia, then Florida, 2 weeks in sunshine -- looking forward to it!!! 0 -
Hi, ladies
Looking for your input and perspective on my dilemma.
Had a lumpectomy back in Jan. currently going thru chemo. Met with Radiologist the first time, she think my margins are too small, 0.5mm in two places, she wants minimum 2mm. I asked her whether I should get a mastectomy, she said she doesn't think so. but if I go for mastectomy, I will no longer need radiation.
So my options are: Recision + radiation (left breast) or mastectomy.
What I am not understanding is why radiologist didn't think mastectomy was necessary? wouldn't it outweigh the risk of radiation?
Please share your thoughts.
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