Canadians in British Columbia

cathy67

Marie,

Thanks! My friends also told me, it is the right time to wear wig, otherwise it will be too hot in the summer.

I stayed a while here back in year 2012, for my birads 3 mammogram, then I left and almost always on six months followup, till this time, the time bomb finally bombs.

This is the forum nobody wants to come, but it is filled with warmth.

Hopefully we can hang on in Vancouver.

Elderberry

cathy67: I highly recommend West Coast Wigs (westcoastwigs.com ) 604 980-3211. Excellent, personal one on one consultation. Really well made wigs. She is on the North Shore, just behind the Michael's store I didn't wear my wig in summer. Too hot! I was happy with scarves but with the gloomy wet cold Fall I am wearing my wig.

cathy67

Elderberry,

Like their customized service, did you buy yours there? How much it cost? Must be very expensive.

Thanks!

Pots

cathy67, working through a cancer diagnosis is a lonely scary business. Don't be shy in saying yes, you are having a tough time coping, if that is how you feel. I could not have survived through that time without help.....the fear of the unknown seems to grow bigger as you get closer to starting treatment (that still happens to me even now) Sending you warm hugs. Let us know how your phone calls go. We’re here.

Vilma65

Hi, my friend who recently finished chemo strongly recommends Pacific hair loss solutions on Burrard st. She found then to be very professional and good prices

cathy67

Pots,

Thanks. The worst moment is to get the medical report, and from now on, will come more and more reports.

cathy67

Vilma65,

Thanks, marked.

cathy67

Hi Ladies,

I called the counselling support line under BC cancer agency, someone will call me for an appointment, it will be on site appointment in BC cancer agency. Hopefully it will help.

cathy67

Vancouver ladies,

I am back. I visited two wig stores today, had a quick consultation, the real hair cost around 2000, and man-made cost over 400. I like the real hair wig of course, I am thinking I can even use it later after my treatment.

Next task is to prepare medicine for constipation. I live with my 14 years, and my husband only visits us biweekly, so I got to prepare everything myself in advance. I prepared much more than I need for surgery, I hope my chemo will go smooth, and that what I've prepared turns out useless.

Thanks this forum, I've learned so much.

MarieK

cath67 I’m glad you found a wig you like. I had lots of wigs for different looks but my favourite was a blend of real hair and synthetic. I got it at west coast wigs in North Vancouver.
As for preparing for constipation a chemo nurse told me to eat 25 green grapes. I’m not sure what the science is behind that but it worked for me!

Good luck with your chemo

cathy67

MarieK,

Thanks.

marianelizabeth

MarieK! Long time, no see. How are you? I am recovering from crazy pain but got an amazing embedded pain pump and wow, new life.

Marian

cathy67

Hi moth,

Today counselor at BC Cancer Agency called me, and I will have face to face meeting with her next week.

Will get back to you, thanks!

cathy67

Dear ladies,

I am doing research and have another question, do you use Neulasta? It is super expensive. And I only have MSP coverage, don't know how to handle it if I need. Always bad news coming in.

moth

Hi Cathy - glad you're going to see the counsellor!

Don't worry about the neulasta. I have extended health but there's also a whole separate program from the manufacturer of neulasta (& grastofil - which is a bio equivalent and a bit cheaper but still expensive) & the federal government & the manufacturers have a deal to pay for expensive drugs which are not covered by MSP. There's someone at the cancer agency whose job essentially is to find the funding for medications for people who cannot afford them. So if you're prescribed that & you either don't have a plan or your plan doesn't pay a 100%, you get referred to them and they'll help sort out the paperwork and get it heavily discounted.

cathy67

Hi moth,

Thanks for the info. Yes, I heard of that. Another question is that, I am still waiting for the oncotype score. But MO said, his estimation is 5% based on dd ACT, and he said three weeks 4 rounds AC then followed by T won't work effectively for me. Then, I found almost all the patients got delayed schedule due to blood test, in other words, dd ACT is almost impossible to carry on without medication. If so, shall I be prescribed medication directly but not just delay the schedule?

Without my score, MO said, 5% absolute chemo benefit with DD ACT, or no chemo. No option for TC, no option for 3 weeks AC followed by T. So my understanding is, 3 weeks is the option I shall avoid, cause it has side effect and no absolute benefit, so hard!

MO is so hard to meet, must ask all these questions before I start chemo.

Thank you, moth, you are so patient.

cathy67

Hi moth,

Another question, does neulasta cause bone pain? Is it very hard to spend through? And any bad side effect due to this medicine?

moth

I didn't find the bone pain too bad. It was there but not so bad that I couldn't stand it. I don't even think I took the antihistamines all the time (they help with the bone pain). I kept walking and exercising and stretching. I remember I occasionally used heating pads but mostly it was just something I could ignore.

I was on both grastofil and neulasta (at different times). I didn't respond to either of them very well & we tried both just in case I was one of the people for whom 1 worked better than the other but it really made no difference which type I used. I used them right through chemo but my white blood cell counts were pathetic right through. Without the shots though I think I would have been at 0 & they would have cancelled my chemo altogether. Many people manage dose dense just fine so I'd just hope for the best. You just can't tell how you'll react.

Oncotype will definitely give you more info. Remember to be sure to be clear how they're counting the benefit of chemo. Are they talking about absolute benefit or relative? There was a study showing that even med students struggle with considering absolute & relative risks https://onlinelibrary.wiley.com/doi/pdf/10.3322/canjclin.54.3.123

Surgery is the biggest bang for the buck - it gives the largest single survival benefit. The chemo &/or rads are primarily to prevent metastatic recurrence and increase odds of long term survival.

I'm not sure if you've seen the Predict website already? It gives you large pooled survival & treatment data (some of the data used to develop the statistical model by the way is from BC but the model itself was developed in the UK). https://breast.predict.nhs.uk/predict_v2.1/

don't worry about asking questions! & if I don't answer it's only because I'm swamped with school. It's an endless stream of exams now & I have a couple term papers to write.

marianelizabeth

I was on Neopogen, not Neulasta as that was paid for in BC and I think the Victory Program paid part of it, I know we had to fill out the Fair Pharmacare at that time. Cathy, has it been suggested that you need Neulasta or Neupogen? My cancer was aggressive and my oncologist wanted it done dose dense which means the drug works to get your blood levels back as close to normal as possible. It is a two week cycle instead of 3 weeks and certainly not everyone needs that.

cathy67

Marianelizabeth,

Yes, I was recommended dose dense ACT, with 5% absolute chemo benefit, but that number is MO's estimation, I am waiting for my oncotype score, cause 5% is too hard to decide. MO also said, only two weeks works effectively for me, I just wonder if delay due to low white blood cell will actually make it as three weeks which has lower chemo benefit.

Thanks for the medication information, I will check whether I will be covered.

Too much stuff to worry, already got flu shot myself, but teen daughter refused to get it, I am not sure if I will get cold from her, need stable white blood cell to fight infection. And there are only two MOs in richmond bc, hard to see MO, impossible to see MO.

Enjoy your day.

cathy67

Hi moth,

Thanks, I will study it later. Busy weekend, still need to serve family. Also, I wonder if talk with radiologist is easy, I am margin negative, however the report says the followings, I wonder if that is problem cause it is less than 2mm.

- Invasive Carcinoma Margin: Negative for invasive carcinoma

- Distance from closest margin: 0.1 mm

- DCIS Margin: Negative for DCIS

- Distance of DCIS from closest margin: 1.5 mm

Too much to worry about, no time to think of the margin, at least they are claimed as negative, don't know what this means. Surgeon did not explain this to me, just said margin negative, then I asked for the copy of the pathology report.

marianelizabeth

My husband also refused to do the flu shot but said if chemo wanted him to do it (I said that it is really not for you, it is to protect me.) i asked my chemo nurse on Thursday and I hardly got the words out of my mouth before she said definitely yes. That might help?

cathy67

Thank you Marianelizabeth,

I will tell my daughter this, not sure if she can accept it.

cathy67

Marianelizabeth, my daughter did flu shot earlier this week! Thanks. And I talked to my husband, not sure he will do, but he already got very bad cold, he works in Seattle, so I told him not come here till he totally recovered.

Moth, I met with counselor yesterday, and we spent two hours together. I talked a lot, the screening program cannot ensure early caught, the mistake of my surgery schedule, annoying disturbances from surroundings, financial issue... She gave me some good suggestions, and arranged an art therapy class for me, but that is in December, I am not sure if I can join due to chemo then, but she said, some patients can go during chemo, not sure if my dd ACT will let me go. And good suggestions about social life, I need social life, but must those I like. For those voices that i don't want to listen to, I just skip. For the ladies who really love me and support me, hang out with them. So I will make some changes on my daily activities. Counselor said, right now my main fight is treatment, it is not timing for me to think over how to deal with those voices, so just avoid! She also said, the trick is to pick up those activities with focus, for example, lessons, seminars, ... but not to attend those chats, chats will bring out negative voices, they always remind me I was caught by cancer, but they are not, under the name of caring. We have no way to change others, but we can change us.

And I bought two chemo caps on amazon, very soft.

Not sure if Christmas will let chemo a break, however I really don't want break, cause dd ACT works more effectively.

And one financial issue, usually have discounts from med company based on family income. My husband has very good income, but he only give $ that covers basic life, I have zero income. I wonder if I can get discount in that case, don't know how to explain this to the nurse then. I heard we can do income tax claim separately, but never tried it. It is almost year end, maybe try this for year 2019? But our relationship is stable, don't know if separate tax claim will damage our marriage, but my treatment will be long term, not sure what kind of financial change I shall do.

Sorry for so much wordings,,, thanks for listening.

Pots

cathy67, thanks for letting us know about your chat with the counsellor. I'm sure it felt like a huge relief to have someone to talk to who gets it. Maybe see if you can find a support group for newly diagnosed breast cancer, it made a huge difference to not feel so alone during and after treatment. Inspire health has some great seminars to check out too.

As a cancer patient in Canada, there is very little you pay for directly as part of your treatment.....the drugs are usually all covered. Things like mastectomy prosthetics, wigs, lymphedema sleeves and massage therapy were out of pocket. I'm not sure what other financial costs you are expecting?

It's good advice to focus on the treatment, focus on now....I think you will be surprised at what you can still do....many of us exercised, went out, went grocery shopping and tried to live our lives as best we could while being careful. I carried hand sanitizer all the time. There are times during treatment where your world gets smaller for a few days mainly because you feel like crap and then may very well bounce back. You won't know what you can or can't do until you are in treatment. Not knowing is hard, I for one,tend to think things will be worse than they are.

Be well,

cathy67

Hi Pots,

Thanks!

I asked counselor, there is no patient support group, and patient activities only in bc cancer agency. However, by joining the patient activities, I will have chances to meet with other patients.

I asked the drug expense, she said there will be some discount provided by manufacturer based on family income, but not woman's income!

Hopefully I can spend through chemo peacefully, 2 weeks 8 rounds, can I cry??!!

Tomorrow morning I will see radiologist, will do that after chemo, will frequently go to 600 building.

I got the biggest combo, surgery, chemo, radiation and hormone!

wrenn

Cathy, There's a breast cancer support group at Inspire Health once a month on a Wed from 6-8 pm. It's free.

In fact there is quite a bit available at Inspire Health. It's at 1330 W. 8th Ave. In Vancouver. Here is their website.

https://www.inspirehealth.ca/

cathy67

Thanks wrenn!

This is a great resource, I am thinking to join their information session to find more. But I am in richmond, transportation is a bit harder, or parking is an issue.

cathy67

Ladies,

I just back from 600 building, that is my first meet with radiologist.

I posted before that I requested oncotype myself since I only have MSP and MSP does not fund this test. Today, I went for my first meet with radiologist, and I will see MO again this Wednesday for my oncotype score. To my surprise, the radiologist said, based on my score, they think the MO won't recommend chemo for me, so they just plan my radiation based on this. They plan 20 radiation for me, and supposed to start in two or three weeks. If I will do chemo after discussion with MO this Wednesday, I shall call them to let them re-schedule my treatment plan, of course MO office will also notify them.

So now comes the question, to which score (they do mention I am low risk) and to which percentage of chemo benefit, MO won't recommend chemo? I hate they don't tell me the score right there, I called MO office around ten days ago, they already got the score but just cannot tell me, and no way to have an earlier appointment.

By the way, my friend and I are really impressed with the friendly environment of BC Cancer Agency. Staffs there even wear their normal clothing, so nice and patient to me. I feel lots of relax!

runor

Does anyone know what the protocol is for follow up mammograms after a diagnosis and treatment? I ALWAYS have my mamms in September but this year got no call. Early Oct I called the booking dept and asked what the deal was. Oh, your doc didn't request one so you're not on the list. They told me to phone my doc and tell him to request a diagnostic mamm and put a rush on it. I did this. In the first week of Oct. It is now November and NO CALL!

Today I called again (this is the third time I have called the booking dept) and she said to expect a call, not an appointment but a call, late December or early January.

What the actual fuck!

How is it that my oncologist books my next appointment a year in advance but the damn cancer agency forgets I exist if they are not constantly reminded and prodded? Is it really up to my doctor to annually request a diagnostic mammogram? Should this not be an automatic thing considering I had cancer in 2017? More than once on this roller coaster of horror I have fallen through a crack that I have to get myself out of, dealing with disinterested staff and receptionists.

I told my doc's receptionist, who I dislike and does a very poor job of being his representative, to tell him to put a RUSH on it. I said this because that is what the booking department told me to say. I am pretty sure that Office Cow edited my request and left out the RUSH part. If RUSH means to wait 3 or 4 months for an appointment.

You know, I try to put this whole bullshit event behind me. I try to get on with life as if everything is normal. I try to not let everyone know that this gnaws at me and and has introduced a level of sorrow to my life that I never had before and will never be rid of. I get tense when mamm time gets close. I started getting tense i August in anticipation of my Sept mamm. I am now nearly insane with tension. (takes very little to push me into insanity, I hover on the brink most of the time). Seriously. I think this is bullshit.

I have called the cancer agency and am once again awaiting a return call. I need to UNDERSTAND who fucked up. Because someone did. I keep trying to fix it but am getting nowhere.