Canadians in British Columbia

I'm still under the care of my MO for annual mammograms,but wondering is there a point where they officially say, you are "discharged" from the cancer agency - i.e. start booking all your follow up imaging and checkups through your GP?

Thanks everyone for your good wishes.. They should call it SCARE TISSUE 🙄.

Runor my breasts have always misbehaved. Mostly benign, but not this year. I am sorry to hear but it is reassuring to know your swelling persisted too. Even after a reduction I am double D so there is lots to corral. And my tumour was small but 7 cm deep so it must be a big scar. It doesn't hurt, can't feel a lump and have no symptoms except anxiety. Yes the waiting is hard.

Went for a walk around the harbour today. Lots of ducks - including hooded mergansers - and a couple of sea lions. A slice of joy in the sunshine

Janky, I am glad you had your dream trip to Oz!

I will keep you posted.

❤️

Waiting for results sure messes with your mind...I think we all jump to the worst case to protect ourselves. I get CT scans every 3 months, it's how my MBC is being monitored and I usually work myself into a big knot the week before getting the results. Yes scanaxiety is real. To cope...I tell myself that the results are only information. Once I get the “information" I can make decisions, plans etc. I still get a mammogram on my remaining breast once a year. Yes it is part of monitoring.

If you don't mind, I would like to share a bit of wisdom living with this dreadful disease. My MBC wasn't found on my annual mammogram or in a CT scan. It was found on a chest X-ray that was done to check out a cough. Yes completely random. So my advise is that the monitoring is important but also pay attention to how you feel. Are you more tired, have a cough, have weird aches...it's hard figure out what is the new normal and what is weird. I keep a journal to track how I feel, track what's changed. It's all information.

On a happy note, my last CT scan shows that after 6 months of low dose Taxol, 2 out of 3 tumours disappeared. The remaining tumour shrank even further. I am considered stable which is terrific news. I’m back on an AI in the hopes that it will starve the last one. Yes I am more easily tired post-chemo and my feet hurt more from neuropathy but I actually feel pretty darn good.

I live in east Van and would be happy to host a gathering if you would like a more central location. We have lots of room and a big dining room table. I’ll be back from our Australian/New Zealand adventure in mid-February so early March would work for me.

Be well,

Ann

Pots that is such great news that the Taxol is working for you. Everything is going in the right direction. Now you can breathe and enjoy the holidays. And get ready for your big trip!

Taxol was originally derived from the Pacific yew tree. There is a yew growing along the path where I often walk. I like to pat the trunk as I go by. I love the fact that some of these treatments have come from natural sources.

Good advice to monitor how we are feeling.

I had my recall mammo yesterday and the spot in question did not show up! They said it might be an “anomaly". I have an ultrasound on Monday to check. (I was able to get an earlier appointment at BCCA than at X Ray 505.)

So far, so good, and I asked for way more info before I left the clinic. This time the tech was willing to talk to me. Seeing the two scans on the screen helped a lot. She said last time they may not have told me much because it was my first 3D mammo and they need more time to study the images.

I have heard that ultrasound monitoring is best for dense breasts and alternating mammos and ultrasounds is a good idea, say every six months. Even if you have to pay, ultrasounds are just $100.

Does anyone rely on regular ultrasounds for monitoring?

As for another get together, I am in and will go anywhere! All being well, we will be in New Zealand until mid March, so I hope it could be after that. Thanks to Marian, NVDobie and Pots for all offering to host.

Marian, how are you doing on the chemo?

Hi Moth, I'm so sorry to hear about your experience. Wanting to turn back time is a heart wrenching feeling. I really do appreciate your sharing your experience with us. Even through your own pain you are helping others. Thank you. I've been very frustrated with how my hair has come back grey when it was not like this before the diagnosis. I've been thinking about shaving it again but have just resolved to leave things be. But I wish I could just look (and feel) like my normal self again. It will take time but one day things will be better. Take care Moth. Truly, I was taken back by your inner and external beauty when I saw you. xxxx

Moth, I wet to the hair site and saw what happened. I had the exact thing happen when I was in my 40's and had to pick up kids from school with orange hair then went back and had the same thing done as you. I ended up with a weird reddish colour that just had to grow out. I have never had colouring done again except this washout stuff. What do you think about having it buzzed short before you go back to school?

I had some rough weeks of late but last Sunday I posted on my blog and decided to try harder not to be so angry, sad, in denial and the week went better and then Paclitaxel yesterday and not knowing how it will affect me as I go forward, I did the mohawk with colour. Made my day.

I hope you can find something fun to do with you hair.

Happy New Year! Wishing you all the best in 2019

Happy New Year everyone. I wish for peace and comfort for everyone struggling here. xo

Kay88, first, I am sorry you are here posting this. I sincerely hope it turns out to be nothing and that is the last post you ever make on this site.

In my case I had no doctors to pick from. I was told who my surgeon was going to be. I think I could have put up a fuss and insisted on someone different. But frankly I was in shock, freaked out, trying not to have a breakdown and pretty much not firing on all rockets. I said I would not bother with the needle biopsy and went instead to a surgical biopsy and they told me who would be doing it. Okay then, I guess that's who I see. I was very happy with her, she also did the lumpectomy. I had complications with my lumpectomy but I have never felt this was an error on the surgeon's part, more one of those fluke things that goes wrong. Kind of like getting breast cancer.

I had my surgery in Salmon Arm. I saw the oncologist in Salmon Arm. You can private message me if you want more information. I hope to god this turns out to be nothing.

We're thinking about you Kay88 and hoping it's nothing. I felt a lump and didn't go to the walk-in clinic until 5 weeks later. Had a mammo and ultrasound 2 days later and they told me right away they wanted to schedule me for a biopsy. I don't have any recommendations for specialists in Kamloops but if for any reason you need any names in Vancouver, just ask. But fingers are crossed you won't need any recommendations! Sending positive thoughts.

Hi Kay88 - I hope it's turned out to be nothing.

Hi everyone, just checking in.

I had my 6 month'ish after treatment end meeting with the MO and was discharged from the FVCC back to my family doctor. (they did ask if I was ok with this & I got the sense that if I didn't have a good family doctor they would have kept me but I love my doctor so it's all good & I'd just as soon not have to go to the cancer agency for check ups if not necessary). I had a clean mammo a couple weeks ago and the MO said she'd put in a request for a bilateral breast MRI 6 months from now. She said that there are some new guidelines out since January and BC is increasing funding for breast MRI for women with dense tissue. She said that in my case it would be reasonable to ask for mammo + u/s or an MRI at regular intervals. I will do the MRI hopefully in 6 months and then see whether I want to continue an alternating sched of mammo and mri.

Seeing the endocrinologist next month for input about my osteoporosis. I've already had one shot of Prolia so not sure she will add much more to the conversation but I'll go anyway.

I've been having some hip pain on & off since Dec, had an xray which found nothing obvious so I think my next step is physio - but I'm dragging my feet on it because I already have a bunch of shoulder exercises which I've not been doing. I'm sure they'll add exercises for my hip and I'll just end up with a longer list to feel guilty about not getting to.

Hope everyone is doing well and enjoying the finally warmer weather

NVDobie - bummer to hear about your osteopenia. Will be interesting to see what your doctors want to do if anything.

The mammo+ ultrasound is what they seem to be recommending right now for dense breasts but as you saw above, my MO also put in a requisition for an MRI - but I don't know if they'll approve it. Are you thinking of doing MRI for some of the screenings?

I met the endocrinologist for my osteoporosis today & really liked her. My vitamin D levels are really low so she's got me increasing my supplementation and we will monitor it. Plus we came up with a plan for treating my osteoporosis & tentative plans for how long I'll stay on Prolia and the strategies to come off it (because when you come off it the bone density can fall again and so you need to take another medication to lock it in). It was reassuring to talk to her because she ran some fracture risk assessment calculations on her computer and said I'm low to moderate risk and it's actually not even clear that treatment is necessary at this stage...but there's nothing wrong with pursuing treatment and it might have some additional benefit of prevention of bone metastases so I'm doing it.

I'm definitely looking to add more exercise as muscle is what strengthens bone.

mariaelizabeth: hello fellow Canadian. Let me know how you do on paclitaxel. I am STILL waiting to get a spot on a chemo chair. I worry about long delays. I feel like since I am Stage IV I am going to die anyway (their thoughts, sometimes mine) - so get those early stage people in first and "cure" them. I don't know how long those liver mets were percolating. I live in Burnaby. BC Cancer Agency has crazy stupid "wait lists"

NVDOBIE-

I was told by a radiologist that mammograms followed by either ultrasound or MRI is a necessity for screening of dense breasts. However, it seems that even some of the MOs at BCCA are not up to date with that practice. Is BCCA doing your whole breast ultrasound after a requisition from your GP? I know my GP supports ultrasound for screening of dense breasts, but it’s not clear to me if BCCA is accepting those requisitions.

Moth - who is your MO? I’d like to mention his or her name to my MO, who doesn’t seem to be aware of the change in screening that came into effect in January. Ironic, because back in January my MO said she was discussing new screening for dense breast patients with the BCCA radiologist. When I saw her this month she said I would just have mammograms once a year, because in her words: “ultrasounds are not done regularly”. Not sure why the doctors at BCCA would be slow to adopt this new protocol for dense breasts. Did I just get unlucky with my MO? Is she the one MO at BCCA who opposes this change, or is she just waiting for the radiologist to recommend it before she takes the time to write a requisition? I have dense breasts, and a strong family history so I definitely want to include mammogram with ultra sound or MRI, in my annual screening plan. I thought BCCA had this great reputation for cutting edge care but feeling pretty let down with my MOs handling of this so far.