Kiwi ladies who need encouragment, but all welcome.
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should still be ok at 10:30 Fizz but I've had lots of midday and later appointments it's imposible then.
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Hope radiotherapy went well Kiwi. A break from drugs sounds nice.
Fizz, hope you get a good car park
Great news yesterday. Good for you sticking up for yourself. I hate to say it but I think MRIs are quite expensive... You can prob Google the price. Hope taxol went well yesterday Shazza, enjoy Pilates.
I'm really tired lately. I guess 8 months of chemo is catching up. I've got anothe onc appt on Monday, then a CT scan in 2 weeks- will be interesting to see how things are going...
It was so great to get Pam's rain, the garden looks so much better, everything looks clean & washed and now we have enough water in the tanks, yay
kt
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http://www.adhb.govt.nz/documents/Non_Res_Price_Li...
Price list from Auckland hospital...
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I had my appointment and got a car park straight away, really lucky. But the traffic in to town from East Tamaki was a different story
Anyway I actually got to see Rita this time, in the past I didn't click with her but she was really nice today and explained things quite well to me. She doesn't want me going onto another AI as I can't tolerate them. My blood pressure it still high. So I am go back in another month and they are going to try me on Tamoxifen which I swore I would never take, but what can you do? Hope everyone is good, kind regards, Donna xxx0 -
Got a park straight away - but traffic was murderous. Tomorrows apt is 7.30am - don't know if that's better or worse. At least I can work when I get back here. Donna, I hope today was good. I think a private MRI is well over a thousand :-( My lobular was not found on a mammogram although it was 13cm when they took it out. I'm planning (and the surgeon as given her consent) to have my other breast removed the in middle of this year, because of that.
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Kiwi I travel from Ramarama to East Tamaki every morning, I leave home at 6:45 and I don't get to work until just before 8am. And as far as I can see the closer you get to town the worse the traffic gets so I would leave really early. At least there shouldn't be any parking problems at that time. I'm always interested to talk to other Lobular ladies because our cancer is so uncommon. I am already getting worried that any future mammograms won't pick up any Lobular tumours I may have. I just got a copy of my pathology report and apparently I had LCIS as well, which means I probably also have it elsewhere in my breasts, no-one ever told me that and I only found out because one of the cancer doctors mentioned it on a report to my Dr a month or so ago. I really don't trust the people who work at the Manukau Super Clinic. I've been there so many times and they have made so many cock ups I just don't trust any of them anymore. I am sure the feeling is mutual when they see me coming. Right from the very first time I went there it's just been one stuff up after another, serious stuff ups as well, not just minor ones. I am going to write a short story about it one day. I am usually a meek person who puts up with a lot, but when it comes to health care professionals I get really angry. They forget we pay their wages, and they work for us!!! I would like to add I know most of them are lovely and they do try their best but some of them Grrrrrrrr!
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Hi guys, hope everyone is doing well. Rita wants me to try Tamoxifen, can't say I'm very happy about it but what can I do? She reckons I will have the same reaction to any AI's I may try. I have heard that AI's are way better for Lobular which is why I'm a bit upset. Kiwi if your tumour wasn't seem on Mammogram how was it eventually found? Hope you don't mind me asking?
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Hi Fizzdon. I was on tamoxifen for 7 years, it's very doable (imo) and kept the bc away for years.
If you can't tolerate AIs I guess it's next best. Do you think she'll keep your ovaries suppressed?- I know you don't need to for it but just wondering.
My ILC wasn't seen on mammo either, but luckily had formed a small palpable lump. It was seen on u/s but that didn't show the full extent of it. Tricky. It's a bit sneaky.
Hope you have a good day
kt
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Hi KT, she wants me to stop my Zoladex injections as well. If I get my period I will seriously be really "bleeped" off. I mean for goodness sake I am 54!!! Did you put on any weight with Tamoxifen? I have put a bit of weight on much to my disgust and I am blaming Femara. Rita explained to me that I have a 30% chance of getting cancer back, and taking Tamoxifen with give me another 6% chance of keeping it at bay. She said I could have the option of not taking anything. But I'm just not that brave. I also just found out when they took out my tumour they found LCIS, so I could have more LCIS in the same boob or my other boob, so I reckon I would be silly not to take anything. Also imagine if I do get it back I would be saying to myself if only I'd taken something, do you know what I mean? I wish I could go back 18 months ago when my biggest decision was what to cook for dinner.
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I know what you mean! (For all of the above!) I'm no longer in menopause & it's a nuisance to say the least. I know it's drastic but I had my other boob removed bcos of the chance of having it there- but apparently no sign of BC in that boob. (Plus I wanted symmetry, having already had 1 boob off) However I was 'lucky' enough to have it metastasize anyway!
Chances are it'll never recur for you, but you just don't know- it's a crapshoot. You just have to do what the onc recommends and hope for the best I guess... It would be nice if they could figure out why some metastasized or recurs & why some don't...
I didn't put weight on with tamoxifen or not much anyway, but have put it on with my latest treatment
Yep, it would be nice if none of this happened to any of us...it is what it is & we just have to suck it up & deal with it
kt
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Answering your question Donna. Of course I don't mind you asking.
My tumour, which was thickening not a lump had suddenly (in May) caused blood vessels, like breast feeding veins to come to the surface. I wasn't feeling great either. I saw my GP quickly, she was convinced that it was a cyst but wrote to the Manukau Breast Clinic requesting a urgent appointment. It took them 6 weeks to see me, by then the thickening was really quite noticeable, and I was having to wear a bigger cup size. The surgeon there took one look and did a core biopsy instead of a needle biopsy. They estimated at 9cm but was 13cm end to end.
I agree about the crapshoot KT. I have decided (with my indecision) to delay taking the hormone treatment until I am through radiotherapy. I checked the Karen (Breast Nurse at Auckland) and she said that the medication was to shut down my ovaries. I am only 48 so was not in menopause when this all started and continued to get my period all the way through FEC, but stopped with the taxotere (in early Jan). They don't consider myself in menopause yet so I need to start on it soon. I am giving myself a couple of weeks of feeling good and chemical free before getting the injection and taking the pills. If this harder medication option detracts from my quality of life, I will also be on tamoxifen
Ultimately I want to know that I did everything possible to help myself. I have put my faith in my Oncologist to help me do this, as I have a strong (over 50% chance of recurrence in the next few years).
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Thanks Kiwi1966. I don't know about you but I am convinced there must be something the medical professionals can do to find Lobular Breast cancer more succesfully than it is being done at the moment. I asked the radiology nurses at Manukau if I could have a look at my mammogram where they noticed a change, and the mammogram taken nearly 15 months before (when I knew I had something in there but they didn't believe me). I saw the same image (exactly the same). So I think they knew something wasn't right but were keeping an eye on things. The reason I think that is they actually phoned me a year later and insisted I go in for a mammogram. They said they could fit me in the following day. I thought it was a bit strange at the time. Did this happen to any of you? If it sounds like I've got a bee in my bonnet about this I apologise, but I do hahaha!
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I agree - there seems to be a lot of lobular around, so I don't get it. Our tumours seem to be larger because they go undetected for longer. I had been having regular mammograms, in fact I had had a fibroadenoma removed 5 years previously via the Manukau Breast Clinic and there was nothing else picked up, however they reckon that this had developed over the last 8-10 years. Mmmm
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Gosh, really. I am going to read up about Fibroadenoma now - was it in the exact same spot? I just don't understand how they can not notice something that is 13cm long. I think you and I really need to get together one day. As I work in East Tamaki and you live in Botany - we could quite easily meet one day after work for a quick coffee, only if you want to of course. I know what it's like with life being so busy etc. and not everyone is like me - curious/obsessed - some people probably just want to forget about their BC. Anyway let me know if you would ever been keen to meet up. That goes to any other Auckland ladies as well. I would love to meet you - all of you
Time for me to stop thinking about these matters now. It's nearly the weekend - I have a big weekend of sewing and reading planned hahaha. Regards to all, Donna xxxxx0 -
Lobular ladies...check this out. Exciting news, I do believe.
http://www.stuff.co.nz/national/67457475/otago-researchers-identify-drugs-to-beat-hereditary-cancers
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I am obsessed as well Donna. I can meet you after work one day. Just let me know when suits you.
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It is exciting that NZ has so many studies happening. My BC friends had not heard of Mepitel film, although their RO's had heard of the study. I have it thanks to Donna!
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Then you read this:
http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=11420513
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Oh goody haha, someone else who is obsessed like me. I can't stop reading and trying to learn as much as I can about Lobular Breast Cancer. One of the nurses who I had an argument before my lumpectomy because she said they were putting the hook wire in the wrong side (even though I told her it was the wrong side she wouldn't believe me). She said to me "I'm sorry Mrs Price, we're just not used to people like you who want to know everything". Thank you for those articles. I had heard about the Maori family with the genetic mutation that leads to stomach cancer. I am very interested to know if Lobular is genetic because I am fearful for my daughter. The Breast Care Nurse told me she needn't worry and didn't need mammograms until she was 40 - really - I don't think so!!! There are a lot of exiciting things happening with cancer research at the moment. Gives me hope for the future, if not for me at least for my childrens generation. Kiwi I am available every night after work except for Thursday (because that's the night I go to the pub with my girlfriends). You name the day and time and I will be there with bells on
It takes me 20 minutes in peak hour traffic to get from my job in East Tamaki to Botany and I finish at 4:30 so could be at Botany at 5pm. Have a nice weekend everyone xxx0 -
Good to hear about the research going on. Not so good about the drugs tho (Kiwi's article)...
There doesn't seem to be good record keeping either, as far as early stage that advances to metastatic. Though having said that, I think they may be doing some here- I had a blood sample taken after I was diagnosed stage IV for a study that was looking into that sort of thing. Can't remember the name of the study though- stupid chemo brain!
Raining again.... Have a good weekend everyone, tgif!
kt
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I know I keep saying I'm going but I am so drawn to this discussion. Why don't we have the gene testing here in New Zealand? Why are we 20% behind in survival rates than our Australian Sisters?
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Fizz - I'm American and I hear you. I am so lucky to have Richard Isaacs as my MO; he's amazing. But the care I got at Wellington hospital was shocking. If I hadn't gotten a second opinion with Dr Isaacs (which cost me $475 but worth EVERY penny!). He goes to the conferences in Europe and the US and keeps up on things, etc. I don't think the care in NZ is what it should be, which I know is partly finances and partly doctor shortages. But you would think with research universities here that things would be a bit more current. The care I got in the US was a much higher standard, but to be fair, I had amazingly good insurance. Without it, my care would have been much worse than here.
I'm interested in Lobular because my best friend (since I was 12) has lost her aunts, grandmother, and mother to BC. She and her sister both have Lobular BC. And I'm a scientist, so it's interesting from that perspective too. I agree with you - knowledge is power to me and I want to learn as much as I can.
Hopefully once I get past moving house in the next few weeks, I'll be coming up to Auckland on a routine basis for 2 or 3 days a month. So maybe I'll get to meet you ladies some day - although I haven't connected with Kruise yet and we're in the same city.
Hugs to all,
Terre
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I would love to meet you Terre. Your friend who has so much BC in her family, is it Lobular Breast Cancer? I have none in my family other than an Aunt who had Ductal a few years ago. I can't get a sensible answer from anyone in the medical profession if my daughter has an increased risk?
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Hi Fizz,
I'll be in Auckland 22 - 24 April, flying home at 6 pm on the 24th. I'll be up pretty much once a month for a while as well, so I'm sure we can figure something out at some point!
My friend and her sister have Lobular BC. Not sure about the other women in her family. I'm not a doctor, but the advice I have given to my younger friends with BC in their family is to at least get a baseline mammogram (and maybe MRI and/or ultrasound), in their early 30s. That way, it hopefully will be easier to pick up any changes as time goes on. That was the recommendation from my oncologist in the US and she is top notch. Note that your daughter may have to pay for it herself, but I would think it would be worth it. And you may be able to find a GP who is tuned in and sympathetic to the issue.
Hugs to all,
Terre
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Fizz I had Breast Cancer at 32, 37 and then 46. I'm adopted so I didn't know if there is a family connection. They agreed to do genetic testing for me as I have a teenage daughter. It came back negative but they still think she should start having check ups from when she is 24 so about10 years younger than me at diagnosis. Because she will be so young and mammograms aren't that reliable when you are younger they suggest a Breast MRI. I think that she wil have to wear the costs for that
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Wow Shazza that is just so young - to get breast cancer and to start testing. My daughter is only 22 and felt a lump in her breast a few months ago which really upset her. It has gone and was probably just hormonal but I think this will be the new norm for us. Extra sensitive when there are any changes in the boob area. The other thing I was wondering about was in that article KiwiCatMom was kind enough to give us the link for it mentioned that Lobular Breast Cancer was genetic. Please correct me if I am wrong but this is what was said - Led by Professor Parry Guilford, cancer genetics researchers have identified drugs that could successfully treat or even prevent deadly familial stomach and lobular breast cancers by targeting specific genetic mutations. So does this mean that Lobular is genetic. They don't give gene testing in NZ which is a real shame. If any one can shed any light on this is would be greatly appreciated. I will have to start saving now for MRI's for both myself and my daughter haha!
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Hi all would live to meet up it is great fun.
Even though my stats don' t say I have lobular as well. No evidence of it in my family at all. But there is bowel cancer and prostate cancer all over the family.
Having real problems with MiL. She is in hospital and they are saying that she needs full time care which we know. To add to this have family funeral tomorrow after seeing the back specialist.
Sorry to whinge. I am just so tired and in pain.
Hugs to all
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Aw that's no good Alyson, I don't mind if you come on here to moan, that's what friends are for and we all understand. We will hopefully organise a get together when kiwicatmom comes up. Not sure but I guess we will all have to keep in touch and organise something real soon. I hope you start feeling better soon, can the Doctor give you some new pain killers maybe? Thinking of you, Donna xxx - PS I am sending you a cyber hug
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Fizz - look at this, under the CDH1 gene: http://www.breastcancer.org/risk/factors/genetics
Overall, it's a good article on genetics and BC. My mother died of lymphoma. An MO in the US said, "I'm not surprised you have breast cancer; there's a strong link between mothers with lymphoma and daughters with breast cancer." Don't know what his basis was; never really looked into it as I don't have children or siblings.
Also found this - link with lobular in women and prostate cancer in fathers: http://www.biomedcentral.com/1471-2407/11/497
Alyson - don't worry about having a moan - you have a lot on your plate. I'm sorry to see you're going through this. That's really hard. And pain on top of it - geeze. Hope you at least get some pain relief!
Hugs to all,
Terre
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Thanks KiwiCatMom, it worries me when I read that. I am currently on the waiting list for a gastroscopy. I just wish they did gene testing in New Zealand, or I win Lotto and could afford expensive medical treatment. I had heard about the connection with Lobular and fathers with prostrate cancer, which my father has had. I've also heard that having a lot of moles could be a connection, I have my fair share of them too. Mind you I could also have Mad Cow disease apparently as I at meat in England in the late 80's hahaha! I'm not even allowed to give blood because of that. I guess one day we will know a cause. It would sure help someone like me with a very overactive imagination.
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