Canadians in British Columbia
Comments
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Cher56 ... reading from the Canadian Thread (it's such an active thread that I can't keep up! I try to catch up when I can) ... so glad you are feeling better! You look fantastic by the way. I can't believe the change in your hair growth.
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Cdnchick so glad to hear about the cancellation. Keep us posted.
only 4 more rads this week then done. The rash on my chest is not much worse so keeping my fingers crossed but the fatugue! Really! Today I have done a lot of walking but my legs feel more and more like lead and I am so tired! I guess fatigue from rads is really real!
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Cdnchick. It is so frustrating that we have to be the medical receptionist, booking agent, follow up person etc. Yup they lost my stuff once upon a time. Now I just accept that I will have to do all the follow up so that the job gets done right.
On another note, so glad you got an early appointment. We are in your back pocket.
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CdnChick - So glad to hear you're able to get in tomorrow... albeit in a stressful way. Keep us posted
Marian - The countdown is on! See you tomorrow.
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Keep me posted if you are up this way Marian.
Hugs all xxx
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Tazzy, I will. I am supposed to be in Manning Park July 24-26 hiking but have also been invited sometime in the last two weeks of July to stay with old friends from our Saudi days who have a place at Naramata. I am also pondering a short course triathlon at UBC July 28 though I think that is wishful thinking since no way I could even consider swimming at the moment with my rads chest. But the swim in only 400 m so maybe doable. Last night when I was so tired I was falling asleep way before dark I also realize that I may have underestimated this fatigue thing. But then it is now 8:45 PM and I am still awake tonight so every day different!
Saw my RO today and beyond a follow-up July 22 I will never see him again. I do see my MO again June 20 but I guess that may be the last too for ? How does that work? Do we see MO's every once in awhile especially if we are on AI's or Tamoxifen?
Yes, Sneaky, countdown indeed; 3 more rads! And thank goodness for this Mindfulness course we are in. In fact thank you since you told me about it and reminded me later too.
Marian0 -
I am 3 months past final chemo treatment and I haven't got any facial fuzz yet - perhaps that will come. I didn't lose my lashes and brows until about 6 weeks post chemo - then they were gone - but only for about 3 weeks, now they are back fully.
I saw my RO today for the 6 week followup after rads - she was very pleased with my skin - said it looked great. She checked the lymph nodes in both axilla and did a breast exam on both breasts - said all looks great and she doesn't need to see me again!! Yeah!! However, she did say that if I ever needed to talk to her about concerns, all I needed to do was phone and set up an appointment with her. Now I will only need to see the MO every 3 months for a couple of years, then every 6 months up to 5 years after diagnosis.
Marian - you are definitely on the countdown - it is such a relief when it is over and one doesn't have to go there every day! Keep moisturizing lots especially afterwards - that's when mine got worse.
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Hi Ladies ... I got my results today!! They are benign with some atypical cells. So it's good news in that they didn't find cancer cells but I'm being referred back to my breast surgeon to find out what her recommendations will be. It's never simple but Phew ... I can breathe a little now. Yay! Yay! Yay!
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Cdnchick wooohooo
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Good news Cdnchick!
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Great news Cdnchick !
Naramata is beautiful... the scenery is amazing. Keep me posted.
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I live in Coquitlam and was diagnosed in March for DCIS with grade 3 triple negative, 4.5 cm tumor. I underwent BMX on April 17 with immediate reconstruction and unfortunately had a bad infection so had to remove the right implant. I will undergo TE maybe in Sept and then put another implant in Dec.
I am hoping someone will know where I can go for a second opinion after receiving results from my 2nd pathology review.
My second pathology report came back with isolated tumor cells in the nodes which is considered negative but its 'controversial' according to my RO. Currently FVCC has said no treatments but I feel unsettled about this outcome.
It says the distance to closest margin
When I met with my rad onc before the 2nd review came back she had said that the chances of my cancer coming back is high due to the high grade and negative to hormones receptors but said I shouldn't need radiation. This was the same when I met with the med onc regarding chemo.
Now that the second review came back with ITC I feel like my body is a ticking time bomb and would like the option of after treatment.
I look at my family history with my Dad currently going through treatment for prostate cancer. He removed his prostrate in 2006, was told no after treatment were necessary as they felt confident they got everything. In 2009, cancer has spread to his bones, spine, etc.
I think of my own history of cancer is taken into account as I had Stage 3 hogkins lymphoma in 1995 and did 8 months of chemo. What are the chances of getting 2 totally un-related cancers in a lifetime? Obviously there is something in my body chemistry make-up that attracts cancer cells.
When my rad onc called me with the results of ITC she used the term that this was a 'contraversial' scenario, she did a round table with her colleagues and all voted no chemo, some voted maybe for radiation. The onc said if my tumor was hormone receptive they might give me hormone therapy but its not so they decided to no treatments at all. Just go back to my GP every 6 months for follow up. I was quite amazed that my fate was decided by others and I had no say.
I called the rad onc back and spoke to her secretary and said I would like to discuss the possibility of after treatment because I couldn't live with constantly wondering about cancer growing inside my body. Asked if I can at least get at a scan to make sure there is nothing there? Since this whole thing started I have not had one MRI or CT scan done.
Sorry this post is so long. I am at my wits end. I was told last Thursday the rad onc has already written a discharge letter 2 days before on my file even though I had expressed big concerns.0 -
Hi Allyp,
I can imagine how unnerving this must be for you. I don't have a good answer for you because I haven't requested a 2nd opinion on my treatment per se (although all the docs got together to discuss whether or not rads would be advisable for me so in a way I got multiple consults). I've wondered about this scenario because it's not like in the states where the docs are competing for our business. But what about those docs who said 'maybe' for radiation? Can you find out who they were and speak directly to one of them? Has anyone here specifically asked for a second RO's opinion? Did you go through the docs at the BCCA's Vancouver centre, Allyp?
Hopefully others can point you in the best direction as soon as they can. In the meantime, I just wanted you to know that I get where you're coming from and that we're here for you. Perhaps ask for the names of the docs who said 'maybe' to radiation for now?
PS - You don't need to apologize for a long post. This place is for you, write as many words as you need.
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Thanks Sneaky for your reply. I will be seeing the MO at FVCC on Wed so hope he will give me some sort of reassurance and options.
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Allyp71, I am with Sneaky on posting as much as you want; we are listening and hopefully someone out your way can offer more advice too. Meanwhile it is good that you are seeing the MO at FVCC (Fraser Valley?). It does seem a bit close for the margin too.
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I am mostly a lurker on this thread, but Marianelizabeth, so glad the rads are almost done, and to hear you planning hiking trips and triathlons. Wow! You are sounding really well these days. Last year in August was the last time I saw my onc. He set me adrift, telling me I was now 'cured' (!!!!????) as far as he was concerned, and not discussing any further check-ups, follow-up or protocol. I'm left wondering if the cancer agency will ever contact me again, and if my family doc is supposed to order the follow-up mammos and scans.
Allyp, all I can say is that you will have to advocate for yourself. If I were you with that history, I'd also want the radiation as an extra precaution. It does seem strange that this has not been recommended. Best wishes to you, and I hope you can get this sorted out soon!
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Liefie, I think your suppose to get a yearly breast exam by your doctor. I don't worry about this and do it myself because my MD never would know between a new lump and old scar tissue. I self exam all the time and would know better than MD if felt any changes.
Wishing all the best with you girls wrap up treatments and new ones to the stupid BC game of survival. Was done my chemo.DMX, surgery May 04 so I just had my cancerversary, I am happy to say I am still kicking butt good!0 -
liefie you should not have set adrift. Are you sure? Perhaps there was some sort of miscommunication between your treatment team. It was at my followup appointment with my RO that I was told that my family doctor would be in charge of future breast followup care and she even told me to tell my doctor that I should schedule the mammogram for September (this was in 2010) just in case but that she would also be forwarding all information to my doctor. A few weeks later I had the followup appnt with my MO after starting anastrozole and the same thing only regarding hormone therapy. My doctor did receive reems of instructions cause I could see as she scrolled over the pages on her laptop when I went in to see her.
hugz4u the followup program calls for breast exams with your doctor every six months for five years (once a year after). The exam includes checking nodes in a bunch of areas so is more thorough than self exam but self exam is encouraged too, if you have ANY concerns you are supposed to contact the doctor first to see if you need a referral.
I'm on AIs so in addition to breasts and mammograms my doctor is in charge of writing the Rx for anastrozole, and ordering bone density tests every two years. When I mentioned that I was having episodes of sudden fatigue after starting the anastrozole she mentioned better check it wasn't a result of the chomo and ordered a MUGA just to make sure it wasn't my heart. MUGA was better than the one I had post surgery - it was the AI's.
Regarding the first mamogram appointment, if you haven't already had a diagnostic exam of your good breast don't be surprised when you get one. They need a good baseline at least that is the explanation I was given. I had an ultrasound for one specific spot and was asked to come back in six months for a repeat mammo. They barely looked at the cancer breast, said it was so messed up from the lumpectomy they couldn't see anything anyway, but "no evidence for malignancy", it was only three years later with the last one that I read on the imaging report that "Post therapeutic changes in the right breast are stable".
Marianelizabeth I've also Ieen following your treatment stories on your blog and the forum. Nice to have someone posting a bit closer to me in age ( I was age 65 at diagnosis) though it took me 5 months after chemo before I could walk even 5 kg, but boy when I did did I celebrate. You are an inspiration!
Re mindfulness, this is old news and not related to cancer but I thought of you when it came up in my email the other day. With your practise you will be well prepared while your husband is away.
David Creswell: Mindfulness Meditation Reduces Lonliness
http://www.cmu.edu/homepage/health/2012/summer/mindfulness-meditation.shtml#.Ubjtj-pL7BQ.email
Kathy
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@bee15 I read the article but didnt see which breast cancer they will test I have tnbc with a posible single met on my 3rd right side posterior fib which is right now been monitored as of march cat scan showed no progression since dec so until it presents with pain etc there wont be anymore cts or bone scans but im not seeing any new studies on tnbc lately and was wondering if we have once sgain been forgotten about
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UPDATE:
Medical Oncologist did not sign off on chemo. Basically the risks outweigh the benefits. He did say that he would refer me to another onc at a hospital so not through the cancer agency and he would also give me scans so I can have a peace of mind as well as follow up with the cancer agency rather then my GP. I'm satisfied so far and don't want to live in constant fear. I can do a follow up in 3 months if I want. I will go and get a second opinion and see how that goes.
He said that even if we were to find something on a scan, it would not be curable so best to not to think about it and enjoy the fact that DCIS is not considered invasive and the isolated tumor cells in the lymph node could just have been displacement. If I do experience any symptoms that show spread of cancer to let them know and they will look at treatment.
So that is the latest so far. I'll see what the 2nd opinion says.This was a comment on my 2nd pathology review.
"Although no definite invasion is identified, small areas are suspicious for invasion. Because of these suspicious areas and the presence of isolated tumor cells in the sentinel lymph node, this tumor is best considered micro invasive."
I guess it's still not invasive enough for after treatment.0 -
Hi Allyp,
Thanks for the update. It's so hard to know what the best thing is to do. Most of us aren't exactly experts in interpreting the pathology and sometimes even the docs can't say what the best course is even when they do understand our risk. There are so many unknowns with this. It does, however, sound like the MO is very compassionate (re: frequent follow-ups). I hope you feel a little more at ease now that you understand why he doesn't recommend chemo. Was he also saying radiation isn't advisable or are you consulting with an RO for that?
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Hi Allyp, I'm not sure if this will help at all but with my recent mammo scare I met with my MO to find out why chemo hadn't prevented what could be happening on my remaining breast? She said that if it's DCIS, treatment wouldn't be chemo but would be surgery and radiation. I hope you'll be able to find out more with your second opinion. keep us posted.
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Sounds like some of you have had good follow up. With me there are no breasts to mamogram,. etc so MD only does a physical exam. Md admits I know myself better than him. I do a node check too. Once I thought I found something and they ordered a US for my armpit. All was clear.Whew!
It is good to also get to know your own body but do keep up the doctors exams also.
I know that "set me free and now I am worried feeling" after treatment. It is scarey but gets better over time.
Take care all and hope you are all coping. In your back pocket!
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Went for my year and a half (since surgery)check up today MO said all is good. she said I am concidered cured I said what please repeat that, she said since they found no cancer cells during my surgery I am considered cured Yay for chemo... I said I was concidering removing my good side just for peace of mind,, she then said I had less of a chance getting a new primary on good side than cancer coming back... huh... did she not just say I was cured aaarg
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Ossa, That appointment was kinda bittersweet huh? Myself I never consider myself cured and I have been done since 2004/05. NIce to hear you are out a year and a half, Keep up the good work!
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Yay, Ossa!
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Kathy, thanks for the link. I went to it and it had a few comments that added to my understanding of just what it is with the practice. Are you practicing? Just read over your post again and I am that point of seeing doctors for the last time or in the case of my MO yesterday, in 6 months. I initiated an appt. with my GP this week and she is planning for a complete physical for me in August to allow a bit of time post rads etc. I am also on Anastrozole (which AI are you on?) and did have questions yesterday on whether Tamoxifen for two years then an AI for 3 might be better. Advice I got was that AI's are a bit better but for me with aggressive BC with node involvement, extensive LVI etc. my MO is happier with me doing the AI for 5 years and by then there will be more information. We discussed my fears of osteoporosis (osteopenic in right femoral neck~~bone scan in Feb.) but I seem to be doing all I can to forestall or avoid it. I guess ostoporosis is preferable to a recurrence~~my chances there are just about 50/50.
I see my BS Monday and for the last time hopefully, RO in July, again hopefully for the last time and PS mid July and that is just for a follow up post rads. I am assuming that my exchange will be in late fall and that all will go well with no problem with the T/E. I also have a mammogram for my left breast in July.
So on with the rest of my life.
Ossa, so good to hear your news!
Now if summer could really start today! Though we must be thankful not to be in Alberta and for those who are, I hope you are not being flooded!
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I have been away from posting for a while, mostly lurking quietly....I just wanted to say Ossa that is great news...
Marion so happy you are almost done. It has been a long haul for you, first the lumpectomy and then the mastectomy. I had my mammogram the end of may, I was feeling some anxiety..no cancer...it was a huge relief...the first word that popped into my head was HOPE.....
Everyone have a wonderful weekend...0 -
I've been following along for a while - don't post much - not much to say other than the occasional Hi!
Anyway I was just dx with BC in right femur at hip. Almost made it 4 years or did I?
I need to ask more questions but my MO mentioned that I might have had this on my femur since original dx.
I see the RO at BCCA on Wed morning and will start radiation treatments after that.
No chemo (don't know why) just radiation and to continue with the Tamoxifen.
I don't really know what to ask - I feel like I'm still in shock over this.
So I need some help getting questions together for this visit on Wed and I was also wondering for those that had bone mets how much radiation did you have and what's the follow up afterwards?
I see Dr Smiljanic (MO North Van) and Dr Nichol (RO at BCCA).
Thanks in advance!
Marie
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