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  • wrenn
    wrenn Member Posts: 2,707
    edited November 2014

    i have Dr. Chia, who supposedly knows a lot but i feel like he doesn't like me....not conducive to healing. :)  

    Since they are basically prescribing the same thing as per protocol for certain types and stages I would rather be with someone I could talk to.

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  • Mouser2843
    Mouser2843 Member Posts: 8
    edited November 2014


    Hi, I live on Vancouver Island. Diagnosis came by a phone call from my GP last New Year's Eve. Jan 9th, I had a mastectomy on my left breast. Started chemo March 9, every 3 weeks. Doxrubicin, and Taxol. Herceptin was added to my Taxol and after the 4 treatments of Taxol my heart function went down to 45%. It is now down to 40.9% so been without any treatment since August 9th!!! Still have my port in, just in case they can restart Herceptin but oncologist said "no more for you" in August. Am triple positive and lately I feel not well.. and not because of the heart thing. I am paranoid of the cancer coming back since I didn't complete all 18 Herceptin treatments (only 4!!!!)/ Being seen by a cardiologist now, seeing an internal Dr. this week for follow up as on heart meds now. Life is not fair lately (to me anyways). I will ask for a CT scan as I feel lumps and bumps where they shouldn't be. My oncologist is in Victoria, my chemo in Nanaimo, surgeon, GP and internal Dr. all in Port Alberni. Terrified? oh yea!  I am waiting for other breast to be removed but everything is on hold because of the heart function decline! Frustrating!!!!!

    Anyone else ever heard of the situation I'm in? Support needed............. thanks!

     

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  • Sneakychiquita
    Sneakychiquita Member Posts: 292
    edited November 2014

    Hi Mouser, sorry to hear of the heart function decline with treatment. I can't help you out with any info, but wanted to send out some good vibes for support. Fingers crossed you get the insight you need from your internist this week.

    Marie - I've had one mammo on the remaining breast so far and I think the plan is to continue to do so on a yearly basis. Perhaps you don't need a mammo because the PET scan has you covered? 

    As for recommending MOs, I've been happy with Dr. Gelmon.

    Looking forward to seeing many of you on Nov 22!

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  • Islandmama2
    Islandmama2 Member Posts: 163
    edited November 2014

    hi mouser

    Just wanted to say hi. I'm in a nanaimo 

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  • marianelizabeth
    marianelizabeth Member Posts: 1,735
    edited November 2014

    Gardengril, very strange for an MO not to examine or question further! But good for your GP and so hope it is cellulitis and also hope that results are fast so no "waiting game" which seems interminable when it stretches out. 

    My MO at BCCA Vancouver is Dr. Shenkier and she is 50% BC and 50% prostate I think. I like her and trust her. Karen Gelmon is the head of BC but harder to get in to see as a result. Sneaky has her and likes her. How was your MO during treatment?

    Koshka I am sending out an email this week~~my husband left last night for our boat so have lots of time now.

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  • marianelizabeth
    marianelizabeth Member Posts: 1,735
    edited November 2014

    Ha, did not see Sneaky's response until I had posted. Mouser, Liefie is also in Port Alberni so maybe send her a PM as I have not seen her here for ages. I will also let her know when I send out the email re the potluck.

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  • Allyp71
    Allyp71 Member Posts: 25
    edited November 2014

    Gardengirl66,

    I met with RO Dr Balkwill and MO Dr Davidson at Surrey BCCA and I found both to be OK.  On one hand, Dr Balkwill said that mine was DCIS so didn't think I needed any radiation and on the other hand, she goes to say that mine was negative for all the hormones, had a high grade which means that the likelihood of it coming back was high and would be aggressive.  She also said my case was "controversial" because I had ITC which is isolated tumor cells but they suggested a 'wait and see'.  They also wanted to discharge me from BCCA care and to just follow up with my GP.  I had to fight to have my follow ups done with BCCA and so Dr Davidson is the person I see every 6 months.  I feel that they don't really take me seriously and is only 'appeasing' me because I didn't feel that my GP would know what to look for since I've had a BMX and she thought I had a cyst when I first told her that I felt something in my right breast.  She didn't seem concerned because my mammogram had come back normal.

    It's a crap shoot for me and I feel like I'm the only person that is concerned about myself.  Every time I have an appt with BCCA, they always bump me.  The last 2 appts I've been bumped.  My next appt was supposed to be Dec 31, and it has now been bumped again to Feb 24.

    So frustrating.

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  • Gardengirl66
    Gardengirl66 Member Posts: 93
    edited November 2014

    thank you for the response and info.Had my ultrasound  today, next is my biopsy...which is what I was expecting. Just weird was doing the exact same stuff this time last year,....hopefully this time not positive for cancer . 

    Allyp71 It is funny (not) to hear about  how some of your appointments have been . Ever since I have been released from  the chemo center at Lionsgate, I have had one appointment where they forgot about me..after checking in , sat for  over an hour , for them to say who are you and oh sorry we forgot about you....sitting right in front of the reception . I have not had a physical since being released from rads.  I have been seeing Sasha Smiljanic for my oncologist....I get the feeling he is either tired or bored by the time I get to see him. I too have been bumped, which I get, there are more serious cases than me, but when I have my time I would like him to be a little more interested in my concerns .I agree with the frustration Allyp. 

    Mouser, so sorry to hear how things have been going for , that must be so hard for you. I do not have any info you , but sending positive thoughts your way and will be thinking of you. Wish there was more I can do to help , big gentle hugs to you !

    Thanks for info on oncologist , will keep you posted .

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  • koshka1
    koshka1 Member Posts: 678
    edited November 2014

    I had Dr Balkwill 7 years ago and did not like her. I thought she was horrible to deal with and she never wanted to answer my questions. Luckily i also had a medical oncologist, I saw Dr Pansegrau, who was most awesome. Any concerns I had he answered and still does.  In fact, another lady from here had Balkwill too and didn't like her.  

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  • koshka1
    koshka1 Member Posts: 678
    edited November 2014

    Ladies as I read through your threads on treatment and stuff and being concerned about released from the cancer agency and not taken serisously, please know that some of us have felt that way too. Unfortunately you really have to advocate for your own care and really demand that you need to see someone.     hugs...Kosh

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  • koshka1
    koshka1 Member Posts: 678
    edited November 2014

    hey Marianne!  cool!  it looks like you had a great trip as I have been following your photos!!!!!    

    keep me posted if you need anything. I will be checking my messages while i'm in Maui :)

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  • koshka1
    koshka1 Member Posts: 678
    edited November 2014

    hi!!! All the new ladies here.... We are having a potluck on Nov 22nd, Saturday, in Vancouver at Marianne's house.  Please post if you are interested and we will message the details!!! 

    We did this last year.... Most of us had never met in person... We had such a great afternoon! We had ladies from all over BC manage to make it !!  Here's a photo :) 

    image

    ...    So please come!!!!! 

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  • marianelizabeth
    marianelizabeth Member Posts: 1,735
    edited November 2014

    And please invite any friends too as they don't have to be on BCO. I invited a fellow yoga student today who is having more recon done by Shaina MacAdam in December and she is looking forward to meeting new BC friends too.

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  • Gardengirl66
    Gardengirl66 Member Posts: 93
    edited November 2014

    I would love to meet everyone, should be available,the only possible conflict would be my son's soccer game.... So count me in...if anyone  needs a ride from the north shore, let me know . 

    A great photo of everyone! 

    Thanks

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  • marianelizabeth
    marianelizabeth Member Posts: 1,735
    edited November 2014

    For the potluck, I sent out an email today to everyone from last year's list as well as some who let me know they would like to come. If you think I missed you or would like to come but not on that list please send me a PM for details. Nov. 22 at noon.

    Marian

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  • Ossa
    Ossa Member Posts: 919
    edited November 2014

    ThumbsUp see you all the 22nd


     

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  • DiZoe
    DiZoe Member Posts: 5
    edited November 2014

    Hello all you beautiful BC women with BC. I'm newly diagnosed and just starting my journey of appointments, second opinions, more appointments and more opinions. It's overwhelming at times - I'm very analytical, and making decisions in the face of the rather conservative BCCA protocols is causing some sleepless nights.  I'm learning a lot from reading these posts - thank you for helping me feel somewhat sane!

    Anyone here a member of Inspire Health? I just joined and hope they can help me wade through the oceans of info coming my way.

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  • Sneakychiquita
    Sneakychiquita Member Posts: 292
    edited November 2014

    Hi DiZoe,

    Sorry you've had to join us, but welcome, nonetheless. I didn't go through Inspire Health, but I've come across a couple of people who have and who seemed to benefit from it. I see that you've just recently had a lumpectomy. Is radiation up next? And if you live within the area, consider coming to the potluck at Marian's in Vancouver on the 22nd.

    Glad to see you're still planning on attending the potluck, Ossa. Was hoping to get another look of that fipple, lol. 

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  • Ossa
    Ossa Member Posts: 919
    edited November 2014

    DiZoe... as Sneaky said sorry you have to be here, but glad you found us.. Joining us for our get together Nov 22???

    Sneaky  you can deff have another look at the fipple, though it will not be pretty.. I imagine a lot of bruising around area as I have my revision the 17 Winking

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  • Carrie61
    Carrie61 Member Posts: 56
    edited November 2014

    Garden girl...I can highly recommend Dr. Klimo, he has an office in West Vancouver and I commute all the way from Langley.  I had an oncologist in Abbotsford but she was not supportive at all with my complementary therapies.  I am much happier with Dr. Klimo, he has a lot of years of experience behind him and a very positive outlook.  I see him every 3 months and he stays on top of my bloodwork monthly.

    Ossie, when is this get together? if I am home I would be interested in meeting you all...

    Carrie.

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  • Ossa
    Ossa Member Posts: 919
    edited November 2014

    Carrie61


    Nov 22 qt noon. It is in Vancouver at Marians I am car pooling with Koshka

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  • marianelizabeth
    marianelizabeth Member Posts: 1,735
    edited November 2014

    Ossa and Koshka, Carrie has sent me a PM but maybe you can all discuss car pooling and share contacts.

    DiZoe, hope to see you on the 22nd!

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  • koshka1
    koshka1 Member Posts: 678
    edited November 2014

    hi Dizoe....

    pleaese continue to reach out to us.  we can help you navigate through all of this.

    as well, it looks like you and i had close to the same diagnosis and probably treatment. if you have any specific questions about surgery, radiation, tamoxifen etc let me know. As well, Inspire Health is phenomenal to deal with. It is always good to have a healthy alternative to the unhealthy side effects of our treatment.

    I hope you will join our potluck, we had such a good time last year.  We all need each other :)

    hugs Kosh

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  • Annecy
    Annecy Member Posts: 54
    edited November 2014

    Hello ladies,

    I haven't been posting lately but I would love to join you for the potluck on the 22 nd of November. I'm presently out of town in Arizona ( celebrating my last Herceptin treatment 09/24) . I'm planning to be back home on Nov 20th. I'm looking forward to meeting you all. Hugs to everyone!


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  • Gardengirl66
    Gardengirl66 Member Posts: 93
    edited November 2014

    Dizoe, welcome ,but sorry you are here. This site has been very valuable to me this past year...it was my surgeon that recommended it.

    Carrie, I had thought of Dr. Klimo, Sasha Smiljanic does work with him. My family doctor has been great through all of this.

    I am on penicillin for the past week , mammo , ultrasound done , going for a biopsy tomorrow. We are thinking it is lymphdema and Cellulitist . My first time with either, everything is a little rushed as we fly to Los Angeles on Thursday , the one year treat/ anniversary of when diagnosed. Here I am doing it all again . I am thinking the pencillian is starting to work, weird (to me) that Cellulitist and IBC have the same characteristics. The only way to find out is a biopsy ..... So tomorrow will get that done.

    Thanks for the info , I appreciate it.

    Looking forward to meeting everyone !

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  • marianelizabeth
    marianelizabeth Member Posts: 1,735
    edited November 2014

    oh Gardengirl, glad you are getting the biopsy done right away and then you will have peace of mind that it is in fact nothing terrible and can hopefully go away and have fun.

    Annecy, glad to hear you are coming. Send me a PM and I will send you details.


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  • Ossa
    Ossa Member Posts: 919
    edited November 2014


    gardengirl... do you have a sleeve and glove for flying? if it turns out to be lymphedema I would highly recommend using them when flying.. makes life easier

     

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  • Gardengirl66
    Gardengirl66 Member Posts: 93
    edited November 2014

    hi Marian, I have one ordered, hopefully ready on Wednesday for pickup.... It is going to be crazy the next couple days ....thank goodness my kids have a pro d. Day tomorrow. Hoping it all falls into place. My arm ...so far is not swollen...hoping to keep it that way. Thanks for asking

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  • Sneakychiquita
    Sneakychiquita Member Posts: 292
    edited November 2014

    Fingers crossed that all you need is some penicillin to get through this, Gardengirl!

    I like reading that another person is chiming in to say she's planning on attending the potluck every time I check in here. Hoping the weather is nice that day so I can ride my bike there and enjoy some wine while we're together. I rarely drink these days that I'll be tipsy after 1 glass… and I plan on drinking more than one

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  • Gardengirl66
    Gardengirl66 Member Posts: 93
    edited November 2014

    Biopsy done, five little clicks later, the doctor told me there was an irregular mass and two small cysts..... So the two week wait , will have to keep myself busy.

    Thanks Sneaky, hoping it all goes smoothly, have a renewal for more pencillian . The doctor did warn me that if anything happens concerning my breast , lymphodema etc. I will not be covered with my insurance. So I will plan for the worst and hope for the best....and hope to have some fun in L.A.

    Sneaky , you gave me a laugh about how quickly wine hits you ....same here....one beer or a glass of wine ....I tell my DH that I am a cheap date now.

    Looking forward to Nov. 22 and meeting everyone ....thanks and hugs to all !

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