Kiwi ladies who need encouragment, but all welcome.
Comments
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Hils, thats great info for Rowan
Rowan, what you were told pretty much descibes what I was told. My follow up person is my BS as well.
"It would be good to have some consistency!"
I remember saying those words too .A suggestion in the meantime would be (if you havent already), to check out on the BC Forum here under this Section :Connecting With Others Who Have a Similar Diagnosis Theres heaps of different Subforums for types of BC including rare ones. There may be some beneficial info in one of these. Well I just did a forum search on " invasive papillary carcinoma" in the aforemented section and here's a wee sample of what came up. There were 3 pages of relevant links. Even though there may not be any NZers in one of these forums, there still maybe info that helps otherwise. Hope this helps.
61 Posts matched your search.
Search Results
Papillary Carcinoma
Mine was IN the ducts....so it IS dcis. It was also encrysted papillary, meaning it was encased...
is based in unconditional love with I consciously allow to enter my soul. Dx 4/16/2012, DCIS, &
In the 'Less Common Types of Breast Cancer' Forum
Jul 6, 2012 06:34 PM by ShaynePapillary Carcinoma
Shayne, DCIS is in the ducts. My Papillary Carcinoma was at 6 o'clock on my chest wall...
In the 'Less Common Types of Breast Cancer' Forum
Jul 6, 2012 05:03 PM by barbe1958Papillary Carcinoma
left the ducts so it was invasive. But minimally, my papillary was stage 1A. I have read that papillary...
In the 'Less Common Types of Breast Cancer' Forum
Jun 20, 2012 09:48 PM by HadleyMucinous Carcinoma of the breast
of encysted papillary carcinoma adjacent to this making it a total of 2.2cm. There were also 3 other 1mm and a...
SaraAust Dx 5/6/2011, 1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2-
In the 'Less Common Types of Breast Cancer' Forum
Jun 20, 2012 11:15 PM by SaraAustCalling all Stage II Sisters!!!
Hello all, I was dx Feb 2011 with invasive papillary carcinoma. Was told it is quite rare...
In the 'Stage I and II Breast Cancer' Forum
Jun 7, 2012 10:05 PM by Rowan47Papillary Carcinoma
Just want to add - NOT ALL papillary carcinoma is INVASIVE. Mine is not. The initial biopsy path...
is based in unconditional love with I consciously allow to enter my soul. Dx 4/16/2012, DCIS, &
In the 'Less Common Types of Breast Cancer' Forum
May 19, 2012 04:39 PM by ShaynePapillary Carcinoma
i also was dx with an encapsulated papillary carcinoma 12mm..... no invasion - I am having...
is based in unconditional love with I consciously allow to enter my soul. Dx 4/16/2012, DCIS, &
In the 'Less Common Types of Breast Cancer' Forum
May 19, 2012 02:07 AM by ShaynePapillary Carcinoma
the imaging suggested no definite signs of invasion (but included an encapsulated cycstic papillary carcinoma...
In the 'Less Common Types of Breast Cancer' Forum
Apr 13, 2012 09:34 PM by BD74IDC (Infiltrating/Invasive Ductal Carcinoma) 2011 Sisters
cancer. Hodgkin's disease, 1985 had treated with mantle radiation, 2010 Papillary thyroid carcinoma, 2011...
In the 'IDC (Invasive Ductal Carcinoma)' Forum
Dec 4, 2011 10:15 PM by lizzy4e0 -
Hils and Musical, thanks so much for the great advice. Will do
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Hi girls, at last some nicer weather today- sun- lovely.
Rowan, I hope you find the answers & support you are looking for.
Well, I have really enjoyed making contact with all of you- you are a great support network. But now I am absolutely fed up with thinking about cancer. I know it will be hard to forget it especially when its 'there' all the time thanks to my mastectomy, + the stupid life altering meds I have to take....
But I am going to try & stay away from here for a bit- I really find myself drawn to the boards way too much & I'm going to try & go cold turkey. So you won't see me for a bit....just thought I should let you know.....
Cheers
kt 0 -
kt we'll miss you (and please dont tell me to aim better) LOL
The thing is this. Been there done that. I know what you mean kt, and I did exactly that myself. I spent a long absense from these boards. Its part of what some of us go through and we need that space to be able to do it when and if we want. I think the best thing is this thread will always be here and if it "rests" for a while thats OK, it will always be there to bump up. Just because it may go quiet for a while doesnt mean it wiull stay that way. Ebbs and flows and all that.
All the best kt and hugs
Musical
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Hey girls, with me having to come on strong about stuff lately, heres something good for a change.
Rang Genetics yesterday as I had a meeting with them some time ago about the possibilty of the BC gene being in my family. It turned out I didnt need to get tested. Anyway I wanted to find out something about my dear beloved sister who I lost 6 1/2 yrs ago to this monstrous disease. My mum and I were her caregivers. She had a mountain of info and we decided the time was right to dispose of it but it was B4 I got BC. I always wanted to know what her status was. She had Hercepton and thats all I knew.
Hospital records are apparently only kept for 7 yrs. I needed to get onto it and find out. Long story short, it was going to be a Logistical SYNDROME that I really didnt want to navigate to view her path report and such. Privacy and all that. Came up with the idea that why not see if Genetics will oblige with the info since I had to get forms signed allowing them to access records. HEY it worked ! Theyre going to send me the Path report too
Musical
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All the best Kt you will definately be missed, but fully appreciate what you are saying. You know the boards will be here with whomever contributing if you need or want to comeback. As you say the sun is beginning to shine and at last it is gettting warmer, so I am hoping we are all going to have a fantastic Spring and Summer.
Great news Musical re your genetics test and getting the results, I hope it gives you the information that you need.
Have a great weekend everyone, whatever you are getting up to
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Kt am going to miss you on here, but as the other girls say, we are here when ever you need us and totally appreciate your reasons for your departure. you take care and hope everything wrks well for you.
Musical, that great that you are getting this info in yr genetics, do hope you get some answers to what you need to know. cool.
Hills. its pretty yuk, weather wise down here and supposed to get worse tomorow. then sunday better, we have to go to Waipawa on sunday to collect a dog kennel. another trade me thing. i think BIL is addicted to that site, just like me addicted to this one, i tred not to yesterday, but i yeilded into tempataion last nite and read a few posts til DH mumbled to come to bed, its 11.30, no wonder you dont get up early, and tired the next days. probably true. so i went to bed like a good girl lol
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i had to wonder the other day when they asked me to make a booking for my next years appointment with the the BS and his off siders and she said, what day in 2013, tues or thurs, quite a simple question, except who knows what is going to be happening in 2013, esp in sept lol. on the negitive side, we dont know if we have tomorrow. but putting that aside, who says i am going to be Palmy in a year, i just thought a long way ahead to book, even tho we can cancel. it just sounded quite strangs her saying what day will be best and what time is best. what was good this time, maybe not in years time. i am being critical here, but i actually was amused by it really. anyway it is a tuesday on the 3rd at 0.15, subject to change. lol if necessary. lo, at least i know i am booked.
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Hey Midnight, LOL
its 11.30, no wonder you dont get up early, and tired the next days. probably true. so i went to bed like a good girl lols
Now I wonder who that sounds like?????? HAha. well almost 'cept I've not been tired the next day... it might help if I was, then I wouldnt sit at this dang computer of a night. Haha I think my monitor is about to bite the dust, the poor ol thing. Its been 'blooming' (a techy term) and the thing went black so I thought here we go this is finally it. Its died....but no a recycle of power buttin and we're up again.... but its doing crazy - i -tiss things. Trouble is Im too jolly lazy to go and get another one. Im allergic to town afterall. lol.
Guess Ill wait till it packs a total sad then I'll HAVE to go.
OH Midnight, Ha that sounds weird that youre going to wait a year to be seen. I dont get that.
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Have a good weekend Kiwi girls, will pop by and see what folks are up too.
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Have a good weekend from me too.
We have our usual busy weekend with the children's activities. We are also taking the girls to the Royal NZ Ballets production of Cinderella on Sunday. They are doing a 1.30pm matinee session. I'm quite looking forward to it.0 -
you have a good weekend too Alyson. hope the weather is better for you up there, gosh it bucketed down here late yesterday, the heavens opened and down it came.
Kiwi mum. that should be a real lovely sunday for you, and seeing Cindrella, one of my fav fairy tale stories and snow white. i hope your girls really enjoy it/ and you too lol.
all the rest of you wonderful ladies ENJOY YR WEEKEND
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Well you never know what a day might bring lol.... monitor f-i-n-a-l-l-y packed a sad after 91/2 yrs. Pretty good. Cant moan. Its had an utter thrashing. Had to pinch the other one off the other computer.
Nice warm wind but pretty gusty...got the washing dry. Great. Raining now. Hubby all tucked up on the long seat having a kipp. (snoring too ) - Tomorrow supposed to be not very nice.
Got my Sisters Path report. That was quick.
Have a good weekend Ladies
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I've got recon on my mind. Has anyone had DIEP reconstruction? I've been online trying to find a surgeon in NZ who does DIEP but I've not found anyone. Everyone seems to do tram only.
My BS has referred me to Julian Lofts. Has anyone else seen him?
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Hi KiwiMum,
As you know, I am in Aus but can say there are still very few surgeons doing DIEP over here and imagine there's probably even less over there. I think that the fact that the DIEP is more taxing on the surgeons in terms of operating room time and microsurgical technique will probably mean that it will be a long time before the health systems in Aus and NZ will support DIEP over TRAM.
I'm scheduled for a muscle sparing free TRAM on the 28th of this month. Surgeon is very experienced and his before/after photos are amazing. I spoke to one of his previous patients who confirmed that "what you see on his computer is what you get" and that she was extremely happy with everything.
Regards Jenn0 -
Thanks Jenn. I did suspect this was the case. Is a muscle sparing TRAM very similar? Is the difference to do with free flap vs connected?
Are you getting nervous? I'm very apprehensive about the surgery and recovery time. Part of me wants to just get the left one removed too and be flat. It's the lopsidedness that bothers me most. I'm going to make another appointment with the PS and ask more questions. I can't decide whether to take the plunge this year or wait until after summer.0 -
Hey - I also posted my DIEP question on the Aussie BC site bcaus.org. Do any of you ever go there?
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I go there KiwiMum. It's not a very busy site unfortunately...
The muscle sparing TRAM can only be done as a free flap.
With the connected/tunnelled TRAM they flip the whole rectus muscle and fat and tunnel it up to the breast area. The blood supply is not interupted from my understanding.
With the free TRAM they totally unattach the fat and a small strip of the rectus muscle with perforator veins (microsurgery) and move it up to the breast area and reattach the veins into veins between the ribs (more microsurgery). The free TRAM is the closest option to the DIEP.
Jenn0 -
Hi Kiwimum I thought and I maybe wrong that DIEPs are carried out at Middlemore, Auckland. As a BS and a plastic surgeon is required and when I was enquiring about recon I was told this in March. I was asking as one of my friends had just had a DIEP carried out in the UK. May be worth asking - apologies if this is not correct. Have to say my brain was not always totally engaged when I was discussing all the possible options.
I read the postings on the Aus site but very rarely post
Jenn hope everything goes smoothly on the 28th and I wish you a very speedy recovery
Brrr it is getting cold this week, but at least it is not as windy as it was in Wellington at the weekend, it certainly lived up to its name on Saturday. Have a great week everyone
Cheers
Hils
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"Part of me wants to just get the left one removed too and be flat. It's the lopsidedness that bothers me most."
Hi Kiwimum, just thought I'd chime in here. Like Hils I wasnt always totally engaged either, and so I didnt totally 'get it' about all the reco options. Possibly because I had my mind made up that I didnt want any reco anyway because of the extra surgery.
It is really wonderful that ladies are coming on here and helping out with the reco options.
FOr me, the quickest route possible was the best, because of my own personal factors, like age, how my hubby felt, how I dont stand up to medical procedures well because of allergies etc etc.
I had 11 mths of being a uniboober and because I wasnt small I found this nothing but flipping trouble. My prossey weighed a ton, the bra strap dug into my shoulder and gave me deep irritation and pain at the same time. I started get really fed up with it and was going without prossey. Then I started getting a back ache because of the lopsidedness. Then I was getting lumpiness going on and I thought NAH!!! Ive had it with this. US's on lumps, more worry blaaahhh.
By getting a Prophy this is the benefits which definitely for me outweighed the cons. - First and foremost hubby was REALLY supportive and totally unselfish about this. He wanted what was best for me. - No more back ache - No more terrible weights to carry around - No more discomfort in bed because I like to lie on tummy sometimes. - NO MORE MAMMO'S Yah!!!!! - Less worried about BC on that side - I could choose my own cup size, or go flat when I chose. (Im in the country and theres plenty of times this is 'safe' if youre self conscious about going flat...lol especially with what I call a tamoxifen tummy ... [ yeah nice one BC thanks for that] )
Hope this helps. Take your time to make your decision cuz only you can make it. Once its made theres no going back. My BS was happy that I had really thought it through and he agreed for my case it was the right thing to do. Just remember any decision you have to make about BC is NEVER ideal. Its always the lesser of 2 evils. Unfortunately thats something we have to come to grips with and every woman works through this in her own time.
Musical.
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hi everybody, i didnt have mx, only a lumpectomy, but is there a physiogical, like greiving woman can get with loosing their breasts to BC, i sometimes think i should of opted for a mx, but hubby said, it could be very hard on me emotionly and physcologicaly and he did not encourage me to unless it was going to save my life and no other choice, i sort of look at it as, i have never had kids, not likely to, perish the thought starting now, one heck of a miracle for that happen. too many four legged bubbas to look after and they drive me nuts at times, i dont think i am motherly material really, putting that aside, what use are they to me, i get snide comments as they are on the bigger side and cause issues in other areas. if it came to the crunch and i had to loose them, would i still feel the same, or am i being brave now because it has not had to be a cause of action to take, and if it happens will i be a blithering mess. i must be about the only one of you that has not had a mx, most of you have had mx's done. the thought has crossed my mind, would it of been better if i had asked to have mx, i was not offered it, just the lumpectomy, am i better off really? just a question that you ladies coming from a different perspective may be able to answer, i will leave the floor open for discussion, Are Breasts better off, than keeping even when the odds are not too bad for keeping them.0
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Hey midnight, all good questions and one every lady needs to ask themselves consider and ask themselves again....in fact I'd say you can never ask too many questions about this. The more angles you cover, the more of an informed choice you can make. We are all so different and our circumstances are variable. That alone makes it every womans choice and essentially the weighing up of the pro's and cons. Then you have to factor in your DX. Now Im not sure whether there is a criteria of DX beofre they offer you a Mast. I was offered it as well as a Lump. Just looking at your Dx and your tumor was Grade 3 as was mine. That means it was pretty agressive. For me that alone constitutes enough to whack my breast off, taking into account other issues unique to me. Ive also heard of many cases where its been 3 operations if they didnt get clear (enough) margins , where they ended up taking the breast off anywayz. All that surgery could have been circumvented. But as I say, thats me, with all my allergies and what not. I have NO regrets whatsoever with my choice of not opting for reco and Id have to say at my age its less important and marvellous not having to lug around that weight.
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Thank you for all your advice and support. I've decided to go back and talk with the plastic surgeon and ask lots more questions. I just called his office and have an appointment for tomorrow. I had better get cracking on those questions!
I hate thinking about "what if" with my other breast. I am keen to get a prophy with immediate recon on that side. I think I need to talk with my BS about that.
Musical - I hear you on the uniboober!! I'd rather be flat than my current lopsidedness.
Jenn - you are blazing a trail and I'll watch your recovery with interest. How long have they said you need off work / or need for recovery?
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KiwiMum, all the best for your appt tomorrow. We''ll be thinking of you and hoping it all goes well for you. Yes write those questions down...lol I dont know how many ladies have said, they remember all the questions just after leaving the appt
I take a note taker with me to all my appts. Its a great idea and a lot of the medical team agree. I always ask 1st though.
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Musical, according to (Miss Muffets, BC nurse, little book she sent me about what i was, grades etc, the DCIS was also a grade 3, now i know they don't consider them to be a problem there, as it is localised and had not spread into my tissues as the IDC did. but both being grade 3, i wonder, if it should of been an option, the thing is they didn't know till they did surgery what grades they were, so would not of been for a few days they knew the grades and my lumpectomy was already done. you kinda wonder all the time, and as hubby says, you can only go on what info is given, whether you are really safe at all with this darn thing or is it going to come back and bite you in the bum down the track, dispite all the treatments. so we just soldier on and keep praying for favour.
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I just talked to B C nurse, actually got her first pop. which was good. the blood test were pretty good and i am still a young chick and pre -menopausel. she said, so if they good, well i will still have alot more years to kick around. Right now i am ravenous and going to have some lunch. What i dont know? but something.
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Midnight Im not familiar with DCIS so Im not sure how it works and how they grade it etc. but I'd have to say theres more that does into it than just your grades. Sorry I should have said that first off. Just looked back and Isaid....
Just looking at your Dx and your tumor was Grade 3 as was mine. That means it was pretty agressive. For me that alone constitutes enough to whack my breast off, taking into account other issues unique to me.
Im fairly confident I qualified myself enough
. Bottom line, if anything bothers you or theres questions you feel you need to ask, do so, and the sooner the better, because as we ascertained earlier, our BC nurse sorta makes herself more 'unavailable' as time goes on. Good one you got her today!
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Hi All,
I am considering reconstruction after a bilateral Mx (I asked for the left one to be removed 'just in case').
I was a D cup before sugery and loved the idea of being flat chested. But, as you know, this takes flat chested to a whole new level. I would like my clothes to sit nicely. I have gained 10ks since surgery and I feel that if I had boobs, they would hide the flab
. I was initially OK without reconstruction, but now that i have energy to be vanity (as opposed to surviving), I am thinking, hmmmmmm B cup boobs could be nice.
Advice please.
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Hey welcome to our family of ladies here, i wont be able to give you much advice, but there are other ladies who will be able to help you heaps. nice to see you here and you will receive heaps of support, its a good bunch in here. warm hugs
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I think to have or not have a MX is a very personal decision. I originally had a lumpectomy but did not get clear margins and following a MRI it was realised that I needed a MX due to the exctent of the DCIS.
If I had remained with just a lumpectomy I would have had to have had radiotherapy. If they had not carried out the MX they would have not found the IDC that was hiding in amongst the DCIS. Prior to my MX I did a pros and cons list for having recon verses not having recon - very happy to share this if anyone would find this beneficial.
I have attached a link to the American Cancer Society Breast Reconstruction After Mastectomy document. I know that it is very USA centric - but it does detail the different reconstructions (note not all are available here) and there is a great section on questions to ask your BS / PS which I thought may be helpful to Kiwimum and anyone else looking at this at the moment. Link is below
http://www.cancer.org/acs/groups/cid/documents/webcontent/002992-pdf.pdf
Welcome Keepingfaith and hope all of your questions are answered tomorrow Kiwimum
Beesie on the USA forum is a mine of information re DCIS if you look under DCIS, hope this helps Midnight
The heavens have opened and it is raining cats and dogs here - at least it is not snow (yet)
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