Canadians in British Columbia
Comments
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Well, back to the drawing board. Dr Gdalevitch's office called today to cancel my appointment (in 3 days) because she is moving her practice out of the province shortly & suddenly can't take on new patients.
The referral process is such a joke. I can only be referred to one PS at a time. Each one can take weeks to respond. If they are taking new patients it takes months to get an appointment. Then they can cancel on you at the last minute.
The breasts that I was promised would take 2-3 months are still a pipe dream 7 months later. I don't understand how they can dismantle me and not put me back together??
Gutted. Broken. Abandoned.
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Fluffy, so sorry to hear your bad news. Did her office not even offer you another doctor? is she in the Lennox/MacAdam office? Oddly, today I heard that another friend saw Sheina MacAdam today for follow up from a DIEP done at NOLA in New Orleans. I told her she was lucky as my understanding is that she does not take new patients but maybe because this is a followup it is different.
In the beginning for me, pre mx, it was my BS who made the referral. Fluffy is this also the case for you?
Sneaky, I hope that gradually this back to work business will improve for you. I am sorry about the Canadian thread as I think it was an important thread for all of us in Canada. I wonder if it will be replaced somehow.
I am still not happy with my hard implant but only thing I can think of is having it replaced with a softer model. Also I picked up the latest reports when I was at BCCA last week and noted that my MO remarked on cording. She never mentioned it to me, only seemed to commiserate on the hard axilla I showed her. Lucky I have a great PT who worked really hard on it before I left, even fitting me in the night before I left. I suspect it has regressed but back to PT this week and lots of appts. booked.
Ossa, hope you are having a great holiday in the sun!
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Hi, everyone. I've been a lurker for a few months, and this is my first post.
@Fluffygerbillips - were you able to get an appointment with Dr. Bovill? I had a unilateral mastectomy with direct implant reconstruction in February, and Dr. Bovill was my plastic surgeon. I'm satisfied with the results and the post-op care. I also had a pre-op consultation with Dr. Van Laeken last year when I was considering a December surgery date. Although I can't speak to her care, I found the consultation informative and didn't have qualms about being her patient. Unfortunately, I don't have knowledge of their new patient policies.
I'm curious about the group's experience with post-treatment care in Metro Vancouver. Although I haven't yet reviewed my post-mastectomy pathology report with any doctors, I was informed by my general surgeon's office that there's no evidence of malignancy. My follow-up care is a big question mark to me. I'm kind of in between family physicians at the moment. After I meet with the general surgeon, I believe I will be discharged from her care. I'll have periodic check-ins with the plastic surgeon until I'm ready for balancing surgeries and nipple reconstruction. What should I expect in terms of ongoing screening and care? Your input is appreciated; feel free to point me to any existing posts or topics that may be applicable.
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Hello BC ladies!
My wife is diagnosed with Stage 1b IDC and had a successful lumpectomy a few weeks ago. Please see my other post here:
https://community.breastcancer.org/forum/69/topic/...
The MO has recommended a very aggressive Chemo treatment while the NCCN guidelines are recommending a genomic test (OncoTypeDX) prior to making any chemo decisions. We have been repeatedly asking the MO to order the test and have accepted to cover for expenses through our own means but she has been refusing it. We are at the point that we'd like to consider changing our medical oncologist.
I need your help to understand:
- How can we ask for another oncologist to take over my wife's treatment?
- Have you had a good experience with any of the medical oncologists at the Surrey cancer clinic (or Vancouver) and can you recommend someone from either of these 2 clinics?
I appreciate your insights.
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Captain if you check the breast cancer management guidelines on the bcca webpage (try google) you can find the what the rules are regarding free testing. They won't do the test if a tumour is very small and chemo is not indicated. They won't do the test if the results have not been sufficiently proven to their liking, younger women for example whose numbers were small in the original studies, also women who are node positive. They also won't do the test for women who will not or cannot do chemo.
My treatment at Surrey was over five years ago so I can't make any comments or onc recommendations. I was surprised at the time when chemo was recommended and believe me I thoroughly researched the idea before accepting. The BCCA librarian emailed me full text copies of studies that I could not access online. Once I started chemo I can't tell you how much care and detail went into making the chemo safe.
Kathy
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Captansupport, I am not familiar with the NCCA organization. However onctotype testing at least here, certainly does not include everyone who wants to be tested. Back when I had my lumpectomy and node pathology I recall asking my MO but she said (this is only my memory saying) that it would not make any difference in my treatment. I had several nodes positive and even though I had a sentinel node biopsy, it turned out that 8 nodes were taken right then with 6 positive. So there was no question for me about chemo~~necessary.
I note you mention 1b and wondering if the b is due to positive nodes and if so, maybe that is why your MO is indicating chemo. I think even with the test it can take time and depending on your situation, time may be a factor~~it was in my case.
You could also ask your MO to bring it up at their weekly sessions where they discuss cases.
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Well Fluffy, I was dismayed to read about Dr. Gladevitch, as she assured me she could do my surgery in July. I am away for 3 months so asked her if I could book in advance. She said she would have no problem getting me in, so I wasnt too worried about it. I am also scheduled to see Sheina Macadams in Sept. 2016! Yes, next year Sept. As Dr. G told me she wasn't sure I had enough belly fat for DIEP so I thought I would get a 2nd opinion.
Have you tried Dr. Kim In Surrey? I heard he was pretty good too...
Wishing you success in your reconstruction
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I am looking for information. I live in Vernon, B.C.
I was diagnosed last July. Two tumors plus DCIS in right breast. ER/PR+' no lymph node involvement, clear margins. Had mastectomy & chemo. Chemo was torturous! I was not offered an oncotype dx test. (I didn't know about it at the time). I don't think things are very progressive in Vernon. Now that they want me to take hormone therapy for 5 years ( I keep putting it off) I would like to have the information from the onco type dx test to know recurrence percentages.
Is it still possible to get the oncotype dx test? Or is it too late for me?
Has anyone in B.C. sought a "second opinion"?0 -
Jade-dream I think all of the BCCA centres are in communication with each other in regard to treatment guidelines. I mentioned above about the BCCA webpage, here is the url if you are interested. Table 4 near the bottom shows the criteria (or not) for OncoType testing.
These are the treatment guidelines for ER positive / Her2 neg cancers (dated Jan 2013 so may not be the most current).
I didn't have the onco test either, it wasn't available in 2009 but even now with one positive node I wouldn't be eligible. I looked at your numbers and thought - tumour grade 3? - well of course chemo would be indicated - well I was wrong, a grade 3 tumour if you are node neg, it appears, is precisely the type of tumour that needs to be tested in order to possibility rule out chemo. (see Table 4) The fact that you didn't get the test could be because you had more than one tumour in the same breast and so both tumours would need to be tested?
Anyway back to your questions. Unfortunately hormone therapy appears to benefit everyone who is ER or PR positive, unless weakly, so that is why it is recommended - see point 2 near the very top of the guidelines.
2. Hormone therapy for five years should be considered for all women with hormone receptor positive breast cancer (estrogen receptor [ER] and/or progresterone receptor [PR] allred score 4-8/8; or 1+ , 2+ or 3+) based on robust large clinical trial data sets establishing a significant survival benefit.2
Sorry not to be more helpful. I understand. One of the reasons I accepted chemo was that I didn't want to have to be on a pill for 5 years. I only committed to myself to try the Arimidex for one year (because of that one damn node) but kept on with it for longer because of all the good things I learned about the therapy here, but did end up in the end stopping early but only a little short of the five years.
BTW chemo was hard for me too, the photo avatar I am using was taken just outside of Chase BC about four months after finishing. At that time I could barely walk 1 km on the level and it took several more months until I could do 5 km, but it was a beginning and I felt so good to be out and traveling (even though it was hot and I vomited in the parking lot from heat stroke probably because I had started Arimidex and going through a second menopause, but I felt so good regardless).
Anyway I also wonder about my real recurrence rate especially now that newer generation tests are becoming available. Captainsupport mentioned on another thread about a BCCA clinical trial starting shortly perhaps with the Oncotest but I wonder if it could be with one of the the new tests as I believe British Columbia researchers have been doing work in this area. <Pam50?> Must do a bit more digging.
Kathy
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Kathy044, thanks so much for all the info. I should have been looking at all this long before now, but I wasn't aware of the onco test. To be honest the fog is just now starting to lift as I am now just 3 months post chemo. Seems like I have lost the past 9 months to surgery & chemo. ( where have I been?!?!). I suppose that maybe I didn't qualify for the test, but still it sure would be nice to have that info. . .
Do you think it might be possible? or would my tumor be destroyed by now?0 -
I think it is worth asking about. I think they keep tissue for quite awhile~~I recall asking to have the hormone receptors tested after my mx just in case they had changed and that would have been some time later.
Since I had so many positive nodes, there was no reason to have the oncotype test done. Nice of you that no nodes and thus no rads!
Just 3 months post chemo is not long and hopefully the fog will recede!
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Thanks for replying marianeliza. Do you know if there someone I can contact at BC cancer agency? It looks like I would be within the guideline for having had the test. I have asked the local "oncology team" and they are very vague in their answers indicating they are not aware of being able to obtain anymore information. I think the oncologist made this decision (I wasn't aware of this test at the time) and they are supportive of that decision. They work as a team with Oncology Practitioners supporting the Medical Oncologist and one doesn't seem to have a choice in who they will see for an appointment. If the tissue is still on file, and I am eligible for the test, I would like to have the information going forward. Any suggestions?0
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Jade-dream, sorry I honestly don't know who you would contact. I hate to say it but I know we are lucky to have the big cancer agency here. I feel that if I had had a legitimate reason for the oncotype test that my MO would have at least discussed the options with me back then. I would press for it with the team regardless of what they have said in the past especially now that you have more information and the help kathy has given you with the links. Also have you asked your MO and team about adjuvent online? I asked my MO to do it for me at the beginning and then after all my treatments~~no difference but the first time it was verbal on the phone. It tells you the risk of recurrence based on your pathology and what treatments you have had. My chance of recurrence was really high but with all the treatment it went way down and the hormone therapy I am on for 5 years (Anastrozole) is actually one of the bigger "guns."
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Jade-dream, I recall when I was first diagnosed and asked about the oncotype test, my MO suggested that it wouldn't necessarily give me the whole picture. Like you, I had multiple tumours and it was explained to me that only a small portion of one tumour would be sent off for the test…even though she said she'd apply for me to have the oncotype test if I wanted, my MO implied that there's no guarantee that the behaviour of one tumour is like the others. Indeed, I remember reading a research article suggesting that multiple samples should be tested for this very reason even for those with only 1 known tumour (sorry, so long ago that I no longer have the link to that literature). Considering that my initial biopsy only picked up on the low grade cancer even though much more active cancer was found after the mastectomy, I was a little too afraid to trust the oncotype test results based off of one small sample.
It never hurts to ask, but I seriously doubt they'll agree to the oncotype testing now that you've completed chemo unless you're going to pay out of pocket. BTW - chemo seriously kicked me in the ass too.
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Thanks marianeliza. The adjuvent online information would be helpful. One of the oncologist practioners had mentioned on 2 occasions that she didn't know if the oncologist had done it or not. Maybe I need to get more insistent in order to get it done. I am supposed to be on aromatase inhibitors, but have asked them to give me until July. ( my whole system is so messed up from chemo that I asked for 3 months away from all drugs). It would be helpful to have some data though. The way things are handled seem very unaccommodating here in Vernon.
Sneakychiquita, thanks for your reply. It makes sense that maybe with two tumors, one small sample of one would not be reliable. I guess that it's all water under the bridge for me now. Maybe the adjuvent online information would be more appropriate for me at this stage. I'm going to try for that. I should have been better informed earlier on, but I was too sick at the time and it seems they don 't offer any options or information here if you don't ask. Thanks for the info.0 -
Amy, so sad to hear that you have your diagnosis but glad that you found us here. There was a Canadian thread too but it was accidentally deleted. I also had my diagnosis at MSJH and always felt well taken care of there but did not have either of those surgeons, so can't help with your decision making. If your case was the same as mine, I went from the diagnosis to seeing the breast surgeon then decision on the surgery. I hope that someone else on this thread knows the doctors! Please keep us posted.
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Normally PET and/or MRI is not done until after surgery and not necessarily even then, especially the PET. Try to stay away from what is done in the US because often enough it is about money not necessity. Sometimes chemo is done first but that may be to shrink the size of the tumour before surgery. But first things first~~sounds as though you should see a surgeon. But I am confused about the oncology dept. calling you~~do you have an appointment with an oncologist at BCCA? If so, then he/she should also be able to answer questions and make some sense of what is going on. Take a deep breath and tomorrow hopefully you will be able to start getting some answers.
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Hi Amy. I'm glad that you found us here on the British Columbia thread. As you can see from my profile I have ILC. I had my surgery in Royal Columbian. My family doctor arranged the appointment with a surgeon and it was surgeon who gave me my biopsy results. My surgeon sort of went though a mental checklist and said, in my case, with the small tumour it would not be necessary to see anyone at the cancer center before surgery.
Marian and wrenn with ILC it is common to have an MRI before surgery as that is the only way to get a good image of the size and position of the tumour in order to get clear margins. It was my surgeon who ordered the MRI and he then consulted with the radiologist the best way to do the lumpectomy.
Amy if you have a large tumour as wrenn mentions you may have to talk with an oncologist to see if you might benefit by having chemo before having surgery to shrink the tumour. Don't panic, for several reasons this is could be a very good way to treat the cancer but only a cancer specialist can help with this decision not a surgeon.
BTW I noticed that you are also following the ILC forum, me too. There are some very knowledgeable women over there, but as Marian suggested, best not to get too far ahead and look after what you are dealing with now. The bottom line to me from reading about ILC over the last five years is that though we do not know as much as we should know about ILC, overall, the prognosis is equal or better than having IDC.
Kathy
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Kathy thanks for letting us know about ILC and MRI's. I guess it comes down again to how individual each of our BC's are. I see that you are almost finished your 5 years of anastrozole. Will you stop at the end of 5 years?
Amy, I hope you were able to get started today on seeing the surgeon and/or the oncologist.
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Hi, I am new to this site and live in Pitt Meadows. I still have to get my profile going, but would like to know if someone can recommend a good plastic surgeon as I desperately want a second opinion. Am having a hard time with capsular contracture after double mastectomy with immediate implants, followed by radiation treatments. I am one of the unfortunate ones who went from Stage 0 DCIS (not picked up by mammogram) to Stage IV Bone Mets in less than two years - despite having a double mastectomy, compact dose chemo and radiation treatments and no affected lymph nodes! I have learned not to ask "Why" as I dont think we will ever understand this disease!
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Hi Boobiesister,
I just sent you a PM and I'm sorry you are dealing with bone mets. Your situation sounds identical to mine except I am still DCIS and had no after treatment after my DM surgery. The BCCA decided that I did not need radiation or chemo so I just need to watch for any symptoms. I had 'isolated tumor cells' but not enough to have been considered lymph node involvement. Your stage IV mets is something that is always on the back of my mind because you just never know. I wish all the best to you and hope you get some of your questions answered. I have learned that the only advocate is you because sometimes the doctors just don't know.
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Hey Sister,
Firstly, I'm so sorry to hear about your mets.
I too am new to this site. I live on the Sunshine Coast and take the ferry into Vancouver for treatment. I have a great PS that I really like. Her name is Dr. Sheina Macadam and she is located in downtown Vancouver. She does a lot of reconstruction and may be able to help you. She's pretty easy to Google.
Best of luck to you!
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Anyone in this group from the Fraser valley near Hope that wants to be together to form a support group to do activities with? Please send me a message
Than k you , Teresa
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Hi , I had it done only had to ask and she said I qualified based on the pathology results. I'm at the Abbotsford cancer agency.
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Hi Piscean - sorry I never saw your message. Thanks for sharing your info. I managed to find someone in Port Moody and have an appointment booked for the first week in June! Quite a bit of travelling you have to do. Hope everything is going okay for you!
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Hi Everyone!
Sorry I haven't checked in here for a while- been busy with family and "other stuff".
Marian - I'm glad you asked about continuing with AI treatment beyond 5 years. I've been wondering about that myself...
I did 3 years with Tamoxifen then switched (after met/recurrence/whatever?) to Anastrozole for 8 months and then switched (after the India controversy) to Arimidex (AstraZeneca brand) and have been on that for just over 1 year.
The MO only said I'd be on it for a while or until it stopped working...I've gotten through most of the initial side effects but I'm surprised that even after 1 year new side effects have developed!
I can't remember the last time I posted but I had a PET scan in January (all clear), saw my MO in late January and my blood work is all good (including low TM numbers - tested Jan & May).
I have graduated to 6 month follow ups but the MO wants me to do my blood work every 3 months. So I won't see him again until July.
I see my PS on Monday for a follow up (continuing to follow up post fat grafting#2 & tummy tuck surgery Feb 2014). He mentioned doing more fat grafting at my last follow up but I'm getting tired (of surgeries) and I'm not sure how much better he can make my recon breast look.
Don't get me wrong I'm happy with all he has done for me. The fat grafting has helped soften my recon breast and thicken the skin and tissue around the implant (my skin was so stretched thin post exchange that I could see the alloderm under). Also to help fill in the divots - still have one at the end of my MAST scar.
But in my case it's still the MAST scar itself that is not "stretching" and holding everything back. Even with fat grafting I'm not getting that fluffy/full "natural" look and I'm not sure I ever will. It sometimes looks like a string tied around a pillow...
I'll see what he has to say when I see him tomorrow.
I hope everyone had a nice weekend and Happy Mother's Day to all the mothers of human and animal babies!
Marie
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MarieK, you have lots of positive news! What is the Indian controversy around Anastrozole? Big discussion going on right now with my FB group that started on BCO when we did chemo at the same time.
Nice to see so many new women posting and hope that things are going OK with you all~~re appts, surgeons and anything else related to our BC.
My biggest issue is cording which got worse when I was away but my physio is working hard on it and crossing fingers. Costs a lot but in the long run I know it is going to be worth it!
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Hi everyone here, I'm really having a hard time and missing my son that died five years ago and going through this with not very many friends as well as having huge amounts of anxiety and feeling like I need some kind of encouragement. It seems I can give it to others but everyone sees me as the strong one ... When deep down inside I'm broken. Losing my son definitely the hardest thing in my life and all that entails is making this journey with breast cancer tougher cause he was such an upbeat encouraging protective son.i guess that's what is making this right up there as being the hardest time in my life because with him around I know I would have been so encouraged...and it's just beyond 💔 and bring back the loss of him all the more. I'm seeing the counsellor at the agency and treasure her encouragement but that's the thing while I'm there talking with her I feel great and hopeful. It's all the time in between the appointments that are my struggle. If there is anyone out there who can relate please message me I'd love to have a texting BC buddy. To hopefully encourage each other. I haven't connected with anyone here yet an feel so utterly alone and spent an hour in my DRs office just crying. I have a ton of pain and apparently lost all ability to cope. He's increased my pain medication. But that won't do anything about how alone I feel. My youngest son who is developmentally challenged an as well as other health problems is such a thoughtful sweat heart I just can't tell him about this and expect him to understand as well as it being inappropriate to even place that onhim. Just happy to have him around and his hugs...just needing a friend who understands.Hopefully anticipating a new friendship, Teresa
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Hi everyone here, I'm really having a hard time and missing my son that died five years ago and going through this with not very many friends as well as having huge amounts of anxiety and feeling like I need some kind of encouragement. It seems I can give it to others but everyone sees me as the strong one ... When deep down inside I'm broken. Losing my son definitely the hardest thing in my life and all that entails is making this journey with breast cancer tougher cause he was such an upbeat encouraging protective son.i guess that's what is making this right up there as being the hardest time in my life because with him around I know I would have been so encouraged...and it's just beyond 💔 and bring back the loss of him all the more. I'm seeing the counsellor at the agency and treasure her encouragement but that's the thing while I'm there talking with her I feel great and hopeful. It's all the time in between the appointments that are my struggle. If there is anyone out there who can relate please message me I'd love to have a texting BC buddy. Too hopefully encourage each other. I haven't connected with anyone here yet an feel so utterly alone and spent an hour in my DRs office just crying. I have a ton of pain and apparently lost all ability to cope. He's increased my pain medication. But that won't do anything about how alone I feel. My son who is developmentally challenged an as well as other health problems is such a thoughtful sweat heart I just can't tell him about this and expect him to understand as well as it being inappropriate to even place that in him. Just happy to have him around and his hugs...just needing a friend who understands.
Hopefully anticipating a new friendship, Teresa
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Teresa, I sent you a PM
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