Canadians in British Columbia

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.

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.

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

They are video games but the first week's game is solving puzzles. I think it will just take some getting used to since I have never used a "joy stick". You mostly use the left hand on that one at least to solve the puzzles. Although it frustrated me I also know that I tend to get worked up about computer problems that eventually work out so I will persist. It would just be nice to read about someone being slower than me since one of my worries lately is how quickly my cognition is declining. :-)

Look forward to hearing how you folks do.

I agree that it is great to have little ones helping out. So sweet.

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.

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.

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.

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.

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! 🌈

After surgery removes the tumour treatment is given to take care of any stray cells that might be wandering around so I don't think they will scan before doing the treatment.

It is stressful to wonder what is going on though.

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

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.

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.

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.

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.