September 2012 Surgery

Dakota212

Kitty and jenn-



I am headed back to work Monday also

Jennt28

So we'll all be exhausted next Monday night :-/



Do you all work office jobs too? I keep thinking I would feel better working in retail and standing rather than sitting all day at my desk.



Jenn

Sneakychiquita

Oh gosh, you working ladies.  I can't imagine... I'm way too much of a space head to return to work anytime soon.  Even if the chemo is deemed unwarranted and I only have tamoxifen to do, I'm fairly certain it'll be awhile until I return.  

I hope you all have a great week and get to do something enjoyable.

Momluke

I am at work for the first time today.  I am phasing back. Half days Tues/Thurs this week.  Half days Mon/Wed/Fri next week then full time the week after. 

I am happy to be back!!  Being home was driving me nuts!!! 

Dakota212

I work for a group of cardiologists. I do cardiac ultrasound. Full time

michellej1980

Physically I could easily go to work but my GP was happy to sign me off till 10th November in the first instance so I was like "yeah, okay". I just couldn't be bothered at the moment, especially with the uncertainty of further treatment and how it will make me feel. Until I know what's happening to me, I just don't think I can deal with work!

kittykoma05

I am an engineer, so I'll be stuck in the office until I'm done with all the appoinents and I can travel again. I don't think I have the strength to travel and do site work right now any way. I wish I could stay home longer, but I can't afford it.



Let's enjoy this week since we have a very long week coming up.

michellej1980

So tomorrow I go for my oncologist appointment. Hope I have better luck than last week! I'm nervous though as I guess we'll have a plan and the journey will begin. I hate chemo...

Dakota212

Good luck Michelle keep us posted!!!

michellej1980

The specialist nurse who promised she would attend with me isn't here. I called the breast unit and she's with patients. Why make promises you can't keep, and then not even bother to let me know? I feel so let down. Hoping the consultation goes better because I feel pretty shit right now. And angry.

Jennt28

How did it go Michelle? You seem like a strong woman who probably coped just fine on your own!



Jenn

michellej1980

It went well thanks Jenn. Haven't had much time to think about it as I've had friends visiting. I'll post a proper update tomorrow...

Sneakychiquita

"They weren't found at the dock, but we know the boats were in the water."  That's how my oncologist described my situation.  Yes, my lymph nodes were clear, but with the LVI there's no guarantee that all the cancer was removed in surgery.  And she suggested that my Grade 2 was a bit on the conservative side -  the amount of cancer found was quite large and the pathology report mentioned that some areas of the bigger tumour had greater mitotic activity so she thinks if the cancer's still there that it will respond to chemo.  I will likely start dose dense AC-T mid to late November.  

I don't think I'll push for genomic testing of the tumours.  There's problems with the Ki67 reliability on an individual level and it would be difficult to ensure that the more aggressive part of the tumour is included in the sample for Oncotype testing.  My onc said she could get the testing done (Oncotype not guaranteed as there's an application process), but I may ask her to cancel it because knowing the technical challenges involved I may not have faith in the results anyways.  

I thought I was beyond physical appearances, but the thought of being bald and not having a real boob has got me pretty down these days.  Prior to seeing my onc I was first reviewed by a young man going through his fellowship at the clinic.  He was very handsome and when he was examing my breast and my foob I just closed my eyes and thought of how he is probably the last man that will touch me there for a very long time.  I think I'd pay to be held by a man now.

I know this will eventually pass, but I'm probably at my lowest since getting the diagnosis.

michellej1980

Well, I met with the consultant yesterday and had a proper discussion, unlike last week with her 'monkey'. She asked me if I wanted statistics and I said yes so she looked at AdjuvantOnline to find that statistically chemo gives me an extra 23% chance of NOT having a recurrence in the next 10 years and the hormone therapy an extra 18%. That sealed it for me so chemo it is.



I will be having at least 4 cycles of TC, 6 if I can manage it. I'll be having a shot of Neulasta as she's concerned about my blood counts given the battering my marrow has taken already over the years. I was concerned that I am 'missing out' on extra drugs as the nurse had previously said I'd either have the E-CMF or FEC-T regimen. Because they don't want to give me an more anthracyclines (so no 'E' for epirubicin) for fear of damaging my heart I'm having TC instead. I'd normally have the E-CMF so Taxotere is replacing both E and M. She said it makes up for them both but I can't help but worry I'm now disadvantaged!



I've got to wait for a Hickman line to be inserted as my veins are so crap. Not looking forward to having one of those again but I guess it will make my and the nurses' lives easier.



She warned me that dexamethasone I'll need to prevent a reaction to Taxotere is going to make my hip problem worse - I have 'avascular necrosis' due to lots of steroids in the past. I said I'd rather need a new hip than heart so it's fine!



Sneaky - your diagnosis is similar to mine. I'm worried about LVI too but the doctor didn't seem to be. She said it certainly isn't an independent prognostic factor but then coupled with the size of my tumour I still obsess over it. Anyway, hopefully, this chemo will sort it out for us both! Sorry you are feeling so shitty right now.



I am going to be using scalp cooling caps - I think they use Paxman here. She said it works in about two thirds of her patients so that's good enough for me. Baldness is the SE I am most bothered about, even though I've been there before. You do get over it, but it still isn't nice. Can you not use the caps? I asked the doc about risk of scalp mets but she said there was no evidence of that being an issue???

Jennt28

michelle - so glad it went better this week! Sounds like you came out with confidence in the doctor and the plan :-)



Jenn

Sneakychiquita

Michelle - I asked about the cold caps, but she said she wasn't a fan because of the chance of scalp mets.  It's a very low probability but I have read in at least 1 article where they reported biopsy confirmed skin scalp mets in 2 of their 400+ patients. That study was published in 2006 so perhaps things have changed since then.  My onc did say I make the decisions, but the fact is that I wouldn't have anyone there to help me with the caps during chemo anyways so I haven't researched it any further. 

My LVI was worrisome because it was evident around both tumours.  She said it wasn't like it showed up in an isolated spot, but that it appeared to be throughout.  On its own, she wasn't worried... the LVI combined with other things like my age and the heterogenous nature of the tumor with portions of it demonstrating rapid growth that makes her think I would benefit from chemo.  That is, assuming there's even cancer left in my system since the surgery.  I think it's the treating without knowing if it's really necessary that I find the most bothersome.   

It's good to hear your consult went well.  It makes such a huge difference when you have faith in your team.  Best of luck with getting the line in and what not.  Do you know approximately when you'll start your chemo?  I'm hoping to wait until late November because my daughter goes in for some surgery on Nov 14 and I'd like to be able to take care of her for a week before getting my first dose.  We'll see what the onc thinks of my plan.

michellej1980

Not clear on the differences between the different scalp coolers but I believe the ones thy use most often here are the ones attached to a machine which continuously circulates the 'cold' through the cap and so doesn't need changing. It seems like the nurses will deal with it for me.



It is horrible knowing that there's a chance you might be doing this unnecessarily. I feel the same but I just keep telling myself what's a few months out of my life to ensure I can extend it for many years?



They reckon I should get my line in in the next couple of weeks, then I have to attend 'pre-chemo' just to find out exactly how it'll all work and meet the chemo nurses etc. I guess they'll talk to me about hair care too to give the cold caps the best chance of working. I reckon I should be starting in mid-November. We're going to have a lovely Christmas aren't we?' :-/

kltb04

RE: Working - do not see how you gals are doing it.  I am fortunate that I am back to being a SAHM again.  I had worked part time in retail for the past four years and after I got my biopsy results, I just did not go back.  They would have worked with me but it was mainly a job for "extras" and the added stress of working just wasn't worth it.  Have a degree in education/had done some long term subbing but I really don't want to go back to that.  So after all this, I have to decide what I want to be when I grow up.

Sneaky - so sorry you are having a hard time.  The hair didn't bother me as much as I thought it would.  Once I started losing it, I shaved it and never looked back.  I had four rounds of A/C and my hair started growing back after - grew all through the 4 rounds of Taxotere and now I have about an inch or so? I never even asked about cold caps, it was just too much work for this lazy gal!

michelle - glad you have a plan in place for treatment - that makes things slightly easier at least mentally.  Take a Claritin before each Nuelasta and about a week after - it helps a lot of folks with the bone pain that Nuelasta can cause.  But my advice is to have pain pills on hand just in case.

Hope everyone else is doing ok.  My PS seems to feel my extra pain is a stitch that just hasn't dissolved yet - so no fill this week.  And no advice other than "you need any pain pills?"  Sigh..

kittykoma05

I got so some pretty shitty news today. I went to see the oncologist for the first time and she told me that there is a chance I might need rads. This comes after my BS assured me I would not need rads or chemo. I had my BMX on Sep 14, and I am just now finding out about this. The oncologist said I need to see a radiation oncologist so she can decide if I need rads or not. Apparently is hard to tell from my pathology report. Of course there is no appointments until next Friday, so I'll have to wait another week to find out for sure. I'll probably ask my PS to stop the fills until I find out since I'm not sure if the radiation should be done before the fills.

michellej1980

I'm sorry kitty. I wasn't expecting this whole ordeal to drag on either until after my surgery when they saw how big my tumour was. The BS had said I would probably not need chemo and so I was really hopeful. Even a couple of weeks ago when I got the pathology results he said the oncologist woud discuss whether I'd benefit from chemo or not, and was suggesting the benefit would be small whereas in fact it is huge. What I've learnt is to not listen to anyone's opinion unless they're the expert in that particular field! What they should learn though is not to second guess other specialists' advice. What was your pathology?

Dakota212

Hi girls. Can I join the chemo club.... Ughhh... 8 cycles of A/C for me and then taxol. I start on nov 8, MO said I didn't need a port. Was thinking about the caps too but agree a lot of work and I won't have someone with me either. Send any advice

michellej1980

I can't find a November chemo thread in the chemo section. Shall I start one?

Edit: I have started one!

Sneakychiquita

I'm trying to look on the bright side of the hair loss.  I've always wanted to do different things with my hair but have been a bit chicken to veer away from the long look that I'm comfortable with.  I recently found a very good stylist with a big heart and will spend a day with her cutting my hair in different ways to get an idea of how I look at different hair lengths/styles and finish off the day with something short and pixie-like.  

I think I'll mostly sport the scarf/hat look, but I still plan on buying a wig for the few times I want to look hot.  Luckily, my health insurance covers something like $200 for a wig purchase (with a prescription).  Although, I'm guessing a good wig can be mighty expensive.  

Sneakychiquita

Oh, I'll join.  Talk to you soon!

kittykoma05

I went back to read my pathology report and if I understand it correctly, it says that the one of the margins on the right side was positive. I guess once the BS told me I didn't need chemo or rads I didn't pay much attention to the actual report. Now I'm mad at myself too for not paying more attention to the report.



Sneaky and Dakota - I'm sorry you guys have to do chemo.

Jennt28

I'm so sorry about the whole chemo and rads "surprise" ladies! I have done things sort of backwards so have already done all of that crap.



I knew right from the first day of diagnosis (mammo, ultrasound, fine needle biopsy and core biopsy all in one day with immediate lab results) that my cancer was highly aggressive and I would be up for chemo :-/ What a day that was...



It's nearly a year (1st December) and I still remember every minute and emotion as if it were last week. My hubby was at work down the road from the testing centre and I finally called him after the needle biopsy and asked him to come over. I was the "last woman standing" at the centre by 4pm and I had been there since 9am. Those nurses and doctors became my friends that day :-/



I had already taken that day off work and hubby and I had planned to meet up after he finished work and go Christmas shopping in the city. Well, we wandered the shops totally stunned. Stopped for a drink at a bar and we both sculled them so quickly and in silence. It was such a sad day...



Chemo was tough. No hiding that fact... But although it seemed never ending at the time I now look back and can hardly remember what it felt like (blanked it out?). My work were really supportive. Since I work in cancer clinical research they had to be really... I continued officially working full time with days either off or working from home after each infusion. It all got really hard when I was doing weekly Taxol and ended up working for 3 weeks with pneumonitis before it was diagnosed properly. Then I had 3 weeks off work.



Ah, I'm rambling now...



Have a good Friday everyone, and a big soft hug to all who are just starting out on this journey (I call it a journey, not a fight). My bulk of my journey will be mostly over by the end of next March when I finally finish the 3 weekly Herceptin infusions.



luv from Jenn

kittykoma05

Michelle - Sorry you were also told the wrong thing at first. I agree that a doctor should not give an opinion unless he is an expert on that specific topic.



Jenn - Thanks for sharing your story. What a day you had when you found out so much in one day!

schoolmom

When I saw my onc the second time he told me my bone scat and CT scan were clear of cancer with some suspicious nodes in the thyroid. This was prior to surgery.  When I asked about Chemo he said less than 3% chance because the tumor was so small.  After lumpectomy and pathology I find 1/3 sentinel nodes, grade 3 cell and oncotype study.  I was so hopeful with that less than 3% and now waiting for the news.....was supposed to get  oncotype results yesterday but the lab wont release them due to Aetna issues.  Maybe today.....

kltb04

For all of you about to embark on the chemo journey - stay strong and don't get too freaked out by all the SEs you read about - you may well not have them.  If you are getting Nuelasta to boost your white counts, take the Claritin - it may work for you, it may not.  Definitely join/start a chemo board - I met some of my besties through this journey on the March board.  I had 4 A/C and 4 Taxotere and still on Herceptin - anyone can feel free to PM me with questions.

Jenn - isn't it amazing how you can remember details about those dreadful days.  I remember the day my APN found the lump, the diagnositic mammo day, the day of the biopsy, the fact that when the radiologist called with the results (which we really already knew) that I was sitting on my couch with my parents talking about American Idol...just these snippets of feelings and memories.

kitty - sorry you got news you weren't expecting.  I too have been told no rads from BS, PS, MO and I am the one who scheduled my first RO consult (who recommended rads but is a first year dr and my BS questions his opinion) - I am supposed to have a second consult now that I have surgery pathology but haven't gotten the appt/referral yet.  Don't quote me on this but from what I read on some of the boards, the more fills you can get in the better according to some PS's - they would rather go ahead and get the fills in before the rads damage the skin.  BUT some PS's won't do it at all, it just depends on your dr.  The RO I saw for my first consult had no issue at all with radiating with expanded TE's.

marianelizabeth

kitb04, I agree about the S/E, good to know about them but we all react so differently. My MO asked me to hold off on the Claritin first cycle and I am glad I took that advice as I have virtually no S/E from my Neupogen shots and will have #6 tonight. Just looking at your history I am wondering if you have had any surgery other than SNB but with a 3cm IDC? 

FYI, my daughter who recently returned home from travels helped me set up my first ever blog which I think will have multi purposes. One is to update many who want to know what is going on but don't want to call and bug me, two is to help me process this whole BC thing and maybe also just to make my mind work in a different way. So far, two posts and part of it covers just what you and Jenn talked about above; the idelible memories of the early days.

http://breastcancereh.blogspot.ca

Hoping you all have a good weekend wherever you are!

Marian

PS Our young adult kids are having a pumpkin carving party here on Sunday and we plan to shave my hair at the same time. Seems fitting for Halloween and no one seems to find it weird so far!