Canadians in British Columbia
Comments
-
Marie, that is not the news you wished for. Why would your MO have thought it was there since the original dx as I am thinking they would have done a bone scan then? I have a friend who has bone mets and she too is on Tamoxifen and she told me it is to help shrink tumours~~at least I think that is what she said. She had been on Armidex prior.
I am sorry I can't help with any of the rads questions but I bet you will already have advice if you are on one of the Stage IV threads.
Meanwhile I do hope that they are able to keep the right remur tumour at bay. BCCA has the best outcomes in Canada or so I have heard more than once so at least we are in the right place.
Marian0 -
Thanks Marian!
You would think that we all would be scanned and maybe some baseline blood work done before undergoing treatment so that we would be treated for EVERYTHING.
But no, that didn't happen in my case. Is that what happens to other BC patients?
I actually did not have any scans until last fall (Sept 2012).
My tumour markers were doing something wonky last spring/summer but I was also undergoing reconstruction and sometimes inflamation can throw the tests off.
After 3 consecutive increases in my CA - 15-3 blood test the MO sent me for a bone scan which showed something suspicious on my right femur and so it was followed by a hip xray, and a CT scan (Sept 2012).
My MO ordered a PET scan even though around this time the tumour markers went well below normal.
I went ahead with the scheduled PET scan (Jan 2013), followed by an MRI of just the hip (Feb 2013), another PET scan (May 2013) and finally a biopsy which confirmed BC.
Now I meet with the RO on Wed morning to talk about radiation and I haven't the foggiest idea what to ask him.
I'm hoping someone on here can help me ask the right questions...
Marie
0 -
Marie I honestly don't know what is standard anymore. But I did have a CT scan and bone scan done last fall before chemo maybe because my BC was so unexpectedly aggressive. The initial core biopsy did not show any LVI at all but 6 weeks later after the lumpectomy everything had changed massively thus I guess they wanted to rule out mets.
But you have got me~~what are the tumour markers and how do they test for them? And in your case why were they routinely testing them? I asked when I saw my MO last week if there are any tests that tell whether cancer is there and she said no. I find it a bit scary to just not know if anything is happening.
I have a feeling that I have heard Dr. Nichol's name mentioned here somewhere and in a positive way. I would not say that if it were the RO I have. I am sure he is competent but I find him patronizing and if I have to go back for rads again some day I will ask for someone else.
Meanwhile I hope you get some ideas of what to ask from others here!
0 -
Marie, you will get through this! I'm sorry I can't help with your rads questions either. Jumping into your pockets for Wednesday... {{big hug}}
0 -
Hi Marie,
So sorry to hear you're having to go through this. Dr. Nichol is my RO. While I had difficulty establishing rapport with him and despised how flippant he seemed to be about the potential of certain side effects from rads, I was told by the technicians that he is considered to be one of the most thorough RO's on staff. He is caring (returned my emails, calls, etc.), I just had a hard time connecting with him. Perhaps after discussing things with him you'll have a better idea what questions you want answers to.
As for scans, my MO explained that they really approach this on an individual basis and don't routinely perform them unless they feel there's a reason to. I didn't get a scan pre-chemo, but because I was freaking out about persistent back pain I was experiencing I did recently get a bone scan. I think she knew it wasn't going to show anything, and instead agreed to it just to put my mind at ease. I did have tumour markers assessed pre-chemo but haven't since and am not sure if that will be incorporated into my follow-ups. Something for me to check into....
Will be thinking of you on Wednesday.
0 -
I found this article written by Sneaky's MO, Karen Gelmon about tumour markers. Marie do you know why your MO ordered them and then repeated them? I may ask my RO since I don't see my MO until January. Such a crap shoot this BC! I know that we get standard care for the most part; chemo, rads etc. but there are so many components and possibilities and even in this article Karen Gelmon says MO's do or don't do these tests and they are correct.
0 -
MarieK, so sorry about the hip met. It is astounding that the protocols are so different, even here in our province from one cancer agency to the next. I'm on Van Island, and had a CT scan as well as a bone scan at the time of diagnosis, but it may be because I was simultaneously diagnosed with bc as well as endometrial ca. Sometimes it really worries me that I do not have any follow-ups with the onc in Victoria. All I've had since finishing treatment in July 2012 was a mammogram of the remaining breast.
Marian, the article that you posted is very insightful. I particularly like the idea that a blood test may become available in the near future to test for cancer or recurrence.
0 -
Marian - thanks for posting the article. It's a very interesting read although I have heard some of what she's saying before and also there is a disclaimer right on the lab report stating that the tumour markers tests should not be used for cancer screening.
I originally saw Dr Klimo in 2009 when I was first dx with BC. It was after I finished treatment in the summer of 2010 that he started checking my CA 15-3 and CA 125 tumour marker levels.
He retired and Dr Smiljanic took over and he continued with the tests every 3 months.
All was good until last year when my CA 15-3 started to rise. When I say rise I mean over the reference range but not over 100. Some women have markers in the hundreds and each person is different.
After the abnormal results I started going monthly. Very interesting that Dr Gelman doesn't recommend having this done too often and to allow time in between for the markers to clear.
Obviously these tests alone can't signify that cancer is present. I've read that dehydration, inflammation and stress can alter the results.
In my case further scans were done based on the "activity" seen in the CA 15-3 and cancer was found.
Thanks ladies for the support and info!
Have a happy rainy Monday!
Marie
0 -
I should add that I haven't had a blood test tumour marker done since April.
Dr Smiljanic said to stop during that time but did give me another order (on Wed) to have bloodwork done before and after rads.
0 -
MarieK. Sorry about your run in with cancer again. I had Dr. Nichols and he must be the most experienced one as BCCA assigned aggressive onc docs for my huge attached to chest wall lump. I liked him. He answered all my questions.
0 -
Wow CdnChick... your post was June 10... so what's happening now? I posted in 2013 Survivors my big crappy news about heart troubles... thinking of you and hope your ok
0 -
Update ... got in to see my breast surgeon and they're going to watch the area and see. So I'll be going for mammograms every 6 months for the next 2 years. The radiologist that did the biopsy was able to remove most if not all the calcification and placed a clip. The pathology came back benign with some atypia so for now they're going to watch for any activity in the area. So I'm keeping my fingers crossed.
Cher56 ... Happy Birthday! So sorry to hear about all that's been going on (just took a peek at your post from 2013 survivors). Never a dull moment. Am thinking about you! {{big hug}}
A shout out to everyone ... hope you are all doing well.
0 -
going in this morning for my last (of16) rad treatment...im so fair..expected some burning...but only slight tan line (rectangular) no pain no redness ....will get my next mammo in 6 months and see radiation oncologist then...he recommends using glaxal in am and vitamin e oil evenings...at least over the big hump...next one is going back to work in september...8)
0 -
Congrats, Pands! Fingers crossed your skin doesn't get worse over the next 2 weeks. Aside from some itchy spots, my skin has pretty much healed (last rads on June 4), but I'd have to say the underlying tissue is very sore and tight. I'm not freaked out at this point... hoping that over time with stretching that things will feel better.
Thinking of you today, Marie.
0 -
Yay Pands!! Keep up your skin care regiment. Eventhough you're done, your skin still continues to react for the next couple of weeks.
Marie - thinking about you.
0 -
Marie I have been thinking of you all day and hope you got some questions answered at the RO today.
Pands, I would say that my skin is about the same as Sneaky's but mine ended July 14. I have been happy with how fast it got better though of course I don't want to speak too soon. My tightest area is under my armpit.
0 -
This is for all you guys finishing rads. I finished rads on July 6, 2012. Had the tightness in the armpit, ROM was okay to good thanks to yoga, but never got back full ROM. I went to see a physiotherapist for the first time this week after DIEP surgery 6 weeks ago, because the tightness in the armpit is worse now. She told me that the best time for physio after rads is about 6 months after last rad, because after that the damaged tissues become harder and less pliable. I wished I had known this, but I hope this knowledge can help somebody else.
Physio gave me exercises to do 3 x a day, and it is ouchy to stretch that arm. Will do what I can to gain back as much ROM as possible.
0 -
Thanks liefie, good info. Why do you think the tightness is worse now? I go weekly to physio and he is continually working on breaking down any scar tissue though so far so good.
Meant to say June 14 of course~~chemo brain lasts how long?
0 -
Hi ladies.
I need to ask.... What happens after treatment?
I saw my MO today and she said no tests would be done after treatment. Is that right? How are you supposed to know if the chemo/rads did what they were supposed to do?! Did I hear her right??? No PET? MRI? CT? I'm just not understanding this. Do I just consider myself cured? What if chemo/rads didn't work?!
I sent her an email... I'm just confused.0 -
Mirmipanda, what you say is correct. I think several of us have been feeling the same as we are just finishing or finished. My MO says no tests available. I posted a few days about tumour markers so you can see that but it is not policy for many reasons for most of us to test them.
I think we need to move on and that is what I am getting my head around rough as it is. The Mindfuness course available at the cancer agency I highly recommend as it has helped a few of us to "let go."
0 -
Marian, you are doing the right thing to have that physio now. My PS tidied up radiation scarring in there during DIEP, so I think that is what is going on.
Mirmirpanda, it was also really hard for me to be dismissed by my onc with only a yearly mammogram of my remaining breast as the only precaution. He actually told me I was 'cured', but we all know that is not completely true.
0 -
I have bloodwork every six months because I am on Metformin trial study. Asked MO about scans, she said no scan there is no test after BC treatment this sucks as it would be peace of mind to have . Was told to feel for and bone pain and headache that does not go away.. not very reasuring..
lifie... my MO also said I was "cured" but as you said we all know thats not completely true.. My body had made cancer cells once,,,, will it do it again is the million dollar question.. Have to be your own advocate
0 -
Thanks ladies for all your caring thoughts and support!
My appt today went very well.
The good news is that I only have one small spot on my femur (Dr said it's rare to find just one and at this stage), it's Estrogen + so lots of treatment options, 10 sessions of radiation should help, very low possibly of bone fracture (it's in a bad spot) from radiation and follow up with Tamoxifen until further notice.
Hopefully I will go next Friday for my tattoos and CT scan positioning and I'll start radiation sometime after that.Interesting...he said no more pelvic u/s and no more mamagrams for me. He said that the pelvic u/s for Tamoxifen is not the protocol anymore and they don't do mamagrams for women with metastic breast cancer. I don't really understand this since I still do have a natural breast....
He did say that I would be followed closely and have regular scans so that would take the place of the u/s and mamos I guess?
So sorry that some of you are feeling "set a drift" after treatment and follow up. I agree with Ossa - you have to be your own advocate and report anything unusual to your GP or care provider for follow up.
It's sad to say, but once we've had it we have to keep vigilant. We can enjoy our lives as best we can but the worry never really goes away...
0 -
Hi ladies, I have been reading but not commenting because I have been so busy with renovations, house guests and other family stuff. I see my MO tomorrow - I am planning on asking about follow up - having read the comments here about others' experiences I guess I won't be too surprized to hear exactly the same regarding tumour markers, scans etc. On another note, I am planning on asking her for a prescription for the scream cream since my DH is getting somewhat impatient with me now that treatments are over - and I most certainly have no sexual desire whatsoever. I will be curious to hear MO's response regarding this request.
I haven't done any physio after rads or surgery and I am a bit tight in the armpit - perhaps I should consider this - I do stretching on my own and my ROM is decent but could definitely be improved.
marian - I signed up for the next mindfulness course which starts in October - I have heard only good things about it and am looking forward to it.
mirmirpanda - I hope I get to hear those words tomorrow about being cured! I requested a blood test to see if my hemoglobin has come up - but my MO said that wasn't routine - but she did it anyway. Definitely have to be our own advocate!!
0 -
adagio, there was someone who knew you at the last class on tuesday. We laughed that you and I are virtual friends only so far. i did ask my RO to order routine CBC too because I wanted to know my hg. My BP continues to be very low even for me and pulse sometimes high. I will be monitoring this while on the AI to see just what S/E continue. I slept really badly for the first time since rads started and ended taking an Ativan~~legs ached, wandering mind. But am feeling tired but OK today.
My GP is doing a full physical with bloodwork in August and she is really proacive and interested which I fel grateful for since we only got her at a GP in November just when I got really sick from chemo.
Marie good to hear it small and ER+ with lots of treatment options. I agree with what you say about being vigilant while enjoying life. I think we are all atune to our bodies these days and only hope that we pick up on anything unusual too as you did. Does seems off to not do mammograms for the normal breast?
0 -
Please excuse my immaturity, but I just can't believe there's no follow up!!! Here, lets cut you up, pump you full of chemicals, fry your skin into jerky and turn you into to a pill popper: have a nice life. So we just have to sit back and hope we got it? I mean don't get me wrong, I'm appreciative for everyone and everything, they're saving my life, it's just that's a pretty big pill to swallow. We've been overloaded with test, after test, after test and then nada?
I'm 34, got diagnosed @ 33. Hazel was just 3 months old! She's 10 months now, she's walking!!! I feel like I've missed out on having a baby because of cancer, I had to focus on myself so much, but at the same time I'm glad she's too young to know what's going on. I'm in 'medical menopause', jeebus, I'm having menopause the same time as my mom. Haha. After all the hair loss n' such, I look like my grandfather. I've been abandoned by family because they can't deal with me being sick or their own mortality. I don't recognize myself. My body, permanently disfigured. My mind is gone, I get stuck in the worst head spaces. My confidence, my pride, shed with every hair lost, like the tears I cry everyday because of all steroids. How I wish I could accept things more graciously, how I wish I could be a ferocious, fearless woman. I have to keep laughing through this, I'm just so tired. I just want peace of mind, after everything we go through. Something that I can see.
Sorry, I'm just a bit sensitive as of late, feeling 'ranty' and strangely very sad this morning. I guess it's just another brick to lay in my fortress of shit I'll never understand.
Starting cycle 7 tomorrow of weekly Taxol, can't wait till this is done, but at the same time I'm so nervous for it to end. So many 'what if's'. Last Herceptin will be in January and then I'm off to Mexico!!! I've earned it!!!0 -
Dear Mirmirpanda,
Your post struck such a chord with me, and I wish I could give you a hug. We all have our pity parties, and our meltdown moments of being the victim, believe me! We are human after all, and you are not alone in this. I do want to say a few things to you.
First off, you ARE a ferocious, fearless woman! This uncalled-for disease is NOT for cissies, and you have weathered surgery, chemo, and rads so far, and will continue to survive the rest of the Taxol and Herceptin. The best indicator of how strong you are, is the fact that you are just 34 years old! Nobody that young should ever have to deal with this, but you are fighting this fight like a pro, have come this far, and you are doing all this while taking care of a baby? WOW!!! You are doing really GREAT, and I truly admire your courage! Little Hazel will be so proud of you one day when she is old enough to understand what you went through, and you are a wonderful example to her. You are way too hard on yourself. Be good to yourself. Cut yourself some slack, and know that you have done/experienced something so life-changing that most people of your age cannot even imagine. In the process you have gained much wisdom too, and are way more mature than many of your peers, I'm sure.
Your hair will grow again. You will eventually not notice the boob anymore. You will gradually move away from being a ca patient to being a normal person again. As time goes by, this will fade. What helped me the most to get over this was to focus on healthy eating and exercise, and become physically strong again. As I became stronger physically, my mental condition and emotions improved dramatically, and moved to a way more positive place. Our minds and bodies are so connected to each other, and they work together. Even if you can take a walk every day with your baby it will help. Smell the fresh air, look at the trees and flowers, and experience the abundant beauty of nature around us. Maybe you are doing it already. In that case, good for you. That is one thing we have control over, and you will reap the benefits.
Best wishes and big hugs to you from a wet Vancouver Island!
0 -
Mirmipanda, I just read your latest post and you are still doing chemo. Did you have rads during chemo? But no matter, you are still in active treatment and so no wonder you are feeling so sensitive, sad, ranty and all the rest of the bs we go through. My lows and they were pretty much rock bottom were after chemo and the mx but before rads. Somehow with "living well with chemicals" and seeing a BCCA psychiatrist and taking the 8 week Mindfulness course I am feeling more like who I was before though will never be the same.
Now having your family abandon you just plain sucks~~but I have known for a long time that you can't always (or even often for me) count on family. But friends, that is a different story as are our mutual virtual friends here who have been here so often for all of us.
Try to get into the fall Mindfullness course at BCCA. I noticed that Adagio has got in.
0 -
Mirmirpanda, nothing to add as Liefie has said it so well. Just wanted to say that my heart goes out to you and the others who are feeling 'cut adrift' at the end of treatment. I am so grateful for this on-line 'home' where we can come for understanding, compassion and caring. Nobody understands like the ones who have been there before you. xoxo
0 -
Thanks ladies. I know with time this will make more sense, it's just really over my head right now.
I haven't had any radiation yet, that will start late August, the 26th-ish I believe. I met my RO, Dr. Parsons, she seems nice; her receptionist, not so much. Says I'll get the 'full load', which was like 30-35? I can't remember, basically every weekday for a month or so. Rads will take me into October and then a 10 year Tamoxifen pill popping party. I'm kind of hoping I can stop after 3 years for baby #2, and then go back on for the duration, but my MO just frowns and shakes her head every time I mention it. The words 'oomph' and adoption have been discussed. First things first, get this shit over with!!!
I'm just starting cycle #7 of 8, YAY!!! Seems like a looooooong time coming. I will be finished weekly Taxol August 2nd, which means no more f'ing chemo and I'm having a party! Well, we were having a party anyways as it's close to Hazel's first birthday and Chris&my anniversary, but still no more f@#king chemo party!!! Then it's Herceptin till January 24th and then I'm off to Mexico with my mom for 10 days minimum!!!
As far as the family thing goes, I don't have much in the way of 'blood', but I make up for it in other ways. I do have the most amazing and supportive friends. My mom really is all I have, aside from Chris and Hazel. My brother and sister have stopped all contact with me, they haven't even asked my mom if I'm ok, not once. I don't even come up in conversation. I called them when I was diagnosed, they knew I was going to have surgery, chemo and everything. Haven't heard word one. Not for Christmas, birthdays, nothing. I've even sent presents and cards to them and their families... Still nothing. It hurts, it sucks and I know if my father was still with us it'd be a totally different story. Honestly, we've never been terribly close, it just stings a bit for them to not even ask how I'm doing. Their loss. Moving on!!!
I will look into the mindfulness class.0
