SueG

Shrink:  thanks for your reply.  It is a relief to know that the side effects you have experienced had not significantly altered the quality of your life.  I agree extension of life is the priority here.  Good luck!

Sue 

Hi all

Nice to know there is company out there.  It certainly helps the journey.

Dreamwriter:  it makes my blood boil to hear that doctors are still speaking to cancer patients in that way.  I worked for Willow Breast Cancer Support Services for ten years and 80% of my work was presenting to health care professionals on psychosocial support skills.  Most of my students were nurses but occasionally I presented to med students and I liked to think that oncologists had joined us in the 21st century of patient communication.  Seems like some are still in the Dark Ages.  It is so much harder to do this if you cannot communicate as a human being with your health care providers.  I am so relieved you switched.

Prestressed: I highly recommend that you keep pushing for a definitive diagnosis.  You only have one life and should never feel uncomfortable about making the most of it.  I am not sure what the services are in Leamington but have you been referred to a breast centre in London.  I am not an MD and do not know what you have already had done but an MRI might be the most useful diagnostic for you.

MKE: So sorry to hear that you had to face a third go-round.  After all the stress of the past three months I have more or less decided to have a prophylactic mastectomy of my 'good' breast.  I think my chances of a recurrence in the other breast are more than 50-50 so it just isn't worth it.  I am having reconstruction on the mastectomy side: tissue expander followed by implant - and it has been going very well so I feel emboldened to do the same on the other side.

CrazyDaisy: I am having the reconstruction done through Womens College Hosp. in Toronto where I have been a patient of the breast centre for more than 20 years.  The plastic surgeon doing the tissue expander reconstruction is a guy called Brent Beber.  He has an office on the Danforth and is a sweetheart.  He put the expander in at the same time as the mastectomy and I go for pump ups every couple of weeks.  It has been a practically painless process and so far I am glad I opted for this kind of reconstruction.  Hope that helps.

Take care all of you.

Sue    

Hey women

Anyone out there on Arimidex and not suffering through a lot of ghastly side effects?  Just picked up my prescription and with all the research I have done I am full aware of all the horrible SE - anyone not feeling bad??  I tolerated Tamoxifen very well 14 years ago when I had my first br. ca.  I guess I am hoping I can 'ride the wave' again.

Sue

Hey Crazydaisy and everyone else

I had the BRCA1/2 test done several years ago and it is free.  They will only do it if you are deemed at risk for being a carrier and if you asked to be referred to a centre that tests (Women's College in Toronto do it) they will calculate your risk factor - it is all to do with family history of pre-menopausal breast cancer and/or ovarian.

The Oncotype DX test is not covered by OHIP and I paid $3600 for it but it has changed my life.  I found out today that instead of doing four rounds of Taxotere+Cyclo. then five years of Arimidex I will skip chemo and concentrate on Arimidex.  The Oncotype DX test is an in depth scoring of the tumour. It gives a grading of the tumour in terms of its likelihood of recurrence or metatastases.  Low scores are 1-14, intermediate are 15-30 and high scores are 31 and above.  I scored 5 which is very good.  Once my Onc. got these results she revised her previous recommendations.  Sunnybrook Can. Cen. are petitioning the Ontario government to fund this test because for women who are in a grey area regarding whether they need to chemo or not it makes a huge difference.  For women whose treatment decisions are more clear-cut the test is of little value.  The test is particularly helpful for women who are ER+PR+Her2- and node negative.  Anyway, hope that information is useful for anyone else out there.

Sue

Hello everyone 

Just found this all-Canadian thread.  Had a mastectomy on Aug. 25 with a tissue expander (for reconstruction) and will be starting chemo next Wednesday.  Anyone out there on Taxotere+Cycylophosphamide?  Also anyone go for the extremely expensive Oncotype Dx test?

Sue

Hi everyone

Thanks for all your messages of support for TC #1 originally scheduled for tomorrow.  It makes such a difference.

However, looks like I will be delayed till Oct. 8.  The Oncotype DX results are not in yet.  I elected to have this test - it is not standard, nor is it covered in Ontario - and having done so my Onco. naturally wants to see the result before moving ahead with her original recommendation of 4 rounds of TC.  If I score very high then she will switch me to FEC+T

I am champing at the bit to get things moving here.  Hanging around sucks but I trust that this is all going to contribute in the long run to a better outcome.  I will stay in touch, and thanks again for the encouragement.

Sue

Hi everyone

It is such a comfort to have you all along on this journey.

Annie: yes we can hold each other's hand - you are just ahead of me on the path.

Elizabeth: seems like we too will be strolling (crawling?!) along together too.

My first treatment is Wed. Oct 1.  so long as the Onctotype DX results are not delayed. 

Lani, I listened hard when you said that the anticipation of it all was worse.  I am a feisty, but realistic woman so I am trying to balance my fears. 

I am a 55 year old British ex-pat who has been living in Toronto, Canada since the 1970's (came for 6 months and stayed).  Life has given me lots of highs - including two amazing healthy kids aged 17 and 20, a pretty solid 27-years-and-holding marriage and an amazing set of friends.  It has also dealt a few lows - a previous br. ca. in 1994, a malignant melanoma in 1999 and the death of both my parents from cancer, but I figure I will harness all that I have learned from both the highs and lows as well as my disgustingly wicked sense of humour to give this returning foe a run for its money.  For everything else I will turn to my health care team, my higher power, piles of DVDs and all of you.

Thanks

Sue

Hello wonderful women

I am starting four rounds of TC on Oct. 1 and plan on being on line with you women for the duration.  Thanks for being there. 

I was first diagnosed with bc in October 1994 and had 14 years disease free.  I was rediagnosed (same breast) in July and had a mastectomy with tissue expander on Aug 25.  I did not need to do chemo first time around and I am so scared now that I have to face it.  Reading your posts really helps.

I shopped for wigs today with my daughter and feel a bit better about the quality available.  I am going to buzz my hair just after my first treatment because I cannot bear the thought of it just dropping out.

You women give me strength and hope.  Thank you.

Sue

Hi Blue16

 It is some months since you made your post but I was attracted to it because after 14 years disease free I am now facing my second diagnosis.  I had a mastectomy nearly three weeks ago and will see my oncologist next week to determine appropriate systemic treatment.  I am ER+PR+ and Her2-.  Tumour was 2.2cm this time with lymphatic invasion.  No lymph nodes left to take so no staging available there.  I got away with surgery/radiation and tamoxifen last time but I suspect the dreaded chemo is on the horizon now.  Drat!  Just grew my hair too! 

If you are still around drop me a line if you have time.  Would love to hear how you are doing and any other long term survivors who are facing this horrible disease again.