Kiwi ladies who need encouragment, but all welcome.
Comments
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I think my Lobular is Classic but I do know there are three different kinds of Lobular and pleomorphic is not the best one to have. Having said that I heard Lobular is slower growing than Ductal so I guess that is a good thing. I'm too scared to stop taking Tamoxifen because I don't want a recurrence. They put me on Letrozole first but I couldn't tolerate the shocking side effects. It gave me terrible heart palpitations and so many other side effects I was on 7 different pills every day. I have thrown them all away now and am only on Tamoxifen. The Oncologist I saw this morning wants me to have an ultrasound and see a Gyne so I guess I can't ask for much more than that. I bumped into Nikki at the Botany Super Clinic too which was lovely
Michelle regarding your comment that your BS wrote down on your notes that you are an intelligent woman - I got told by one of the Nurses at the Manukau Super Clinic that they are not used to people like me who want to know everything. I can't believe there are people who don't want to know everything haha! ILC is less common than Ductal and I think they are just starting to really investigate it now. There is a guy called John Smith whose wife has Lobular and he posts a lot of really interesting stuff on this site about Lobular, unfortunately I find it really hard to follow 
Michelle I also read that you didn't know Lobular was so hard to see and if you had known you would have had MRI's. I've had 3 MRI's in the past two years in the public system. If you have insurance surely MRI's would be covered? I have to get back to work now but I am always around should you wish to talk. Take care, Donna xxx0 -
Hi Michelle, although I have ILC in my signature (it's what I was first told after initial lumpectomy) it turned out it was actually mixed ductal & lobular. I think that's rare too from what I've read... Don't know if it changes anything tho.
I guess you're going privately for your treatment. I see Reuben Broom at Auckland hosp, but have seen him privately a couple of times- he's at Canopy too. I get to see him on Monday, with public care you never usually know who you'll see, but the nurse specialist I talked to today has got me in with him.
I got the 'anxious' label (yuck) as I was asking lots of questions & querying choices (back at the start of my journey)- no, I just like to know I'm getting the best treatment. I think I'm pretty relaxed generally regarding my health considering....
How did you gals go with your appts, Nikki & Donna?
It's been a beautiful day today, I managed a walk with a friend. Hope you've all had a good one too
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Oh, must've posted at the same time Donna. Glad you're having follow up
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Nice to see your lovely smiling face at Botany this morning Donna.
I saw Sheridan Wilson instead of Rosalie, and she was really good. She's organising a CT of my lungs and bone scan sometime in the next few weeks. I am so over this SOB business and the hip pain. I will be pleased to get some answers, good or bad. I am hoping that she found me to be a sane individual because last time I saw her I was a bag of bums, just about to start chemo.
Michelle, I think I just have common garden ILC, although I am the same as you. I can't be on nothing. I am looking at having my ovaries out so that I don't have to have my monthly zoladex injection, I will still need the exemestane though, which is the one which makes me feel old and lousy. Still a reduction in medication can't be a bad thing.
I hope everyone is having a lovely day in the sun.
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Hey Nikki. Sheridan is nice isn't she- I saw her at Ak onc last time
I'm glad she's taking your concerns seriously and ordering scans. Best to know for sure one way or the other.
Isn't Auckland a small place....
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Thanks for info on getting MRIs in public system Donna. My sister is at high risk because of our family history of BC but she can't really afford an MRI privately. I will mention this to her. By the way, my breast surgeon Vanessa Blair has a PhD in lobular breast cancer (and stomach cancer I think) so I've been really lucky to have her on my side. I've also read John Smith's posts and I admire him for all the research he's done and his dedication to his wife. The medical and scientific terminology is pretty difficult to understand though.
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Hi guys, Auckland is a small place and it was neat bumping into Nikki. I agree with you ladies, Sheridan Wilson is fabulous. She doesn't make you feel like a complete and utter nutter/hypochondriac which I know I can be sometimes. She seems to take our concerns seriously. I am so glad Nikki that you are getting some action at last!!! Michelle I think the only reason they gave me so many MRI's is because I had Lobular and even though I told them I had something growing in my boob they didn't believe me for 18 months. Also, as you know lobular can be multifocal (hope that's the correct terminology). The other reason why is I had an argument with a rather rude young Doctor who told me I didn't need MRI's every year. I told her yes I did and they gave me one. The other time was because I had something going on with my good boob. One thing I have noticed though is if you choose not to have a mastectomy they do seem to keep a close eye on your boobs - funny that! Don't know if this will be annual though, I would doubt it! So I don't know if your sister would qualify? Did she have the gene test? Also Nikki I have downloaded all the info on the Conquering Cancer day on the 9th April and am keen as mustard. Take care everyone, Donna xxx
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Wow CT scan on Monday. That was quick. I doubt that the Bone Scan will be as fast.
Hope you're all having a lovely day.
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Hey Nikki I just got a call from the Manukau Super Clinic and I have an ultrasound this afternoon at 4:15. Sheridan Wilson certainly doesn't muck around does she haha! Now I have to drink 3 cups of water an hour before and try not to pee myself - I know too much information aye!!!
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Fantastic! I'm so glad you're bothbeing taken seriously and Sheridan is on to it
Another beautiful autumn day here. I love autumn.
Good luck with all that water Donna!
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I am beginning to think that Counties hasn't got enough work to do! This has all seemed too easy. Yay for Sheridan Wilson.
Remember to steer clear of potholes on the way or else it could all turn very nasty with that full bladder! Good luck.
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Hi there, well I made it with no accidents which was a miracle as I had to sit and wait for an hour. Very grateful they saw me so quickly though. Apparently I have endrometrial thickening which is a concern and the lady who did the pelvic exam said they will have to do something. So now I am really worried, yet again and just so over it
I wonder what the criteria is for a hysterectomy? I am supposed to be going away tomorrow to Beach Hop with a couple of girlfriends, but now my heart just isn't in it and I just want to crawl under a blanket and hide. So I have to put my big girl britches on and get on with life, put on a brave face for my family and keep going. Good luck with your tests Nikki, I will be thinking of you. Donna xxx0 -
Hi hope everyone's enjoying the slightly cooler weather today. I now look forward to autumn and even winter because it's a bit easier to tolerate the hot flashes! When I had my mastectomy it was July so it was easy to cover up with jumpers, scarves, layers etc. Summer presents quite a challenge with skimpy clothing and our humid climate. I keep meaning to go to Naturalwear in Royal Oak and get a proper prosthesis and bras with the government subsidy that I've heard about. I just have a post-surgical light prosthesis and bra which keeps riding up and doesn't give my real breast (C cup) enough support. So I'm always adjusting it and pushing the prosthesis down, trying to do it subtly! I will probably have the other breast removed this year, though have some concerns about lymphedema being triggered in the right arm even if no lymph nodes are removed - have read about this on another thread.
Donna, it sounds like Tamoxifen is causing problems. All these drugs cause so many side effects. Letrozole has made my chronic migraines worse, my hair is definitely thinning, vision more blurry, aching joints, feeling weepy etc. etc. I'm sure you all have your own collection of SEs. I don't want to complain about these as most of you have been through far worse.
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Optimist, please PM me. I have quite a few mastectomy bras, and 2 size 6 prosthesis which I got from Silverdale last year - not worn. I would be happy to get them to you if you would use them. I don't. I used the knitted variety and 2 that KT sent me. I didn't have any problems whatsoever with my good boob mastectomy.
Donna, sounds familiar, Kruise had some "down yonder" issues recently as well.
Kath Taylor called me this morning from the Breast Clinic and asked if I would attend a meeting at Middlemore tomorrow to discuss the logistics of providing chemo infusions there instead of having to truck into town. They are specifically looking at breast and bowel. There will be surgeons, oncologists etc, who want to know how it worked or didn't work for the average patient. Turns out that they are probably going to run chemo out there towards the end of this year. Yay for all those who find themselves needing it. I'll let you know how it goes. I talk a lot so I imagine that's why they've asked me. God, I am going to have to act sane twice in one week ........
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Hi Nikki that is fabulous news about the Chemo, will save so much effort for heaps of people, all that stress and parking issues etc. They have asked because you are lovely, experienced and they obviously value your opinion!
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Thanks Donna, I hope so or it could be because I am gobby lol.
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Well done Donna! A drive and an hour wait with a full bladder! I hope things are sorted quickly for you. Try & forget about it till after your weekend away (yeah, right- I know, but try
)Hey Nikki, that's great that you get to have input
It would make life a lot easier for others if chemo is closer to home. Thinking of you re your test on Monday. Michelle, I too had noprobs with my prophylactic mastectomy. It's easier too, when they don't take lymph nodes out for sure.
I'm having a quiet afternoon after a busy morning at work. Nice to catch up with you, now to read the paper....
See you later
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A favour ladies. Please could you tell me any issues which arise from having to travel long distances (or within Auckland) for chemotherapy, long or short term. i know what mine were, but it would help today if I had a bit more from other people. Thanks, don't want to look like a dork.
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hi Ladies ...Just a quick Hi. I'll try and catch up and write some more later. Nikki are you just wanting thoughts re Auckland area or just anything in general?
Donna just wanted to say I'm going through what you are..had scan etc after weird bleeding, got told my uterus was 1cm thicker, so been to gynae because of uterus etc. He thinks I have a uterus polyp so wants to do the surgery, put a camera up, chop it off if it's there and do a clean out. I asked him about doing a hysterectomy but he said that they don't do that unless really indicated because it can cause a lot more problems. I don't want to have the op, even if minor because I hate them but I went to see him a week and a half ago now so they will be phoning me soon to chase me up on booking it in.
Have a good weekend everyone.x
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Hi Kruise & Nikki
Nikki, I know the travel on top of chemo makes it extra tiring. Especially if you have to deal with rush hour traffic. It adds to the stress as well.
Then there's the cost- petrol & time. If your working it takes more time off work (so loss of productivity & cost to employer).
All that stress & fatigue is not good for your body (or mind) as it's trying to cope with a serious illness.
But you've prob got all that already so I don't think it's anything new! If I think of anything else I'll let you know.
Oh, maybe it's easier for patients to have support with them if your treatment is based closer to home....
Kruise, I hope you get your op soo so you don't have to worry about it for too long.
Later, kt
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Hi guys. I have just finished my final stay for the oral taxol trial which ended up being a disorganised shambles that was extended a day longer than it needed too. Never be the first participant in a trial there are too many kinks to iron out.
Looks like after 4 days trapped inside while the weather was good it's all turned to custard again.
Hope everyone has a great weekend. I'm off to work but will catch up with the thread tonight. Looks like some of you have been busy.
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Nikki, have just received the bag with all the bras and prostheses. Your generosity has overwhelmed me considering you only met me a week ago online. Also thanks so much to your husband for delivering them. The foobs are so much better than the lightweight one I had because they are heavier so won't ride up. I particularly like the black bra but they are all great. I will 'pay it forward' in the future to someone else who may need something. It means a great deal to me.
kt, thanks for your comments on your proph mastectomy. It was the axillary node clearance that was so hard to heal from last time. It still feels a bit uncomfortable 9 months on. I saw Mary Wakefield, a lymphedema therapist several times after surgery and she was great with massage to help with cording etc. Hope things are going well with you.
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Michelle. I am so so pleased that you will use them - they weren't doing much in my wardrobe. Hubby was in your area so decided to drop them off so that you can test drive over the weekend. I believe that you can get matching knickers for the bra's, not that I bothered (not a matchy matchy kind of girl), from the place in Silverdale. I am just paying it forward because KT gave me some boobs when I needed them so I appreciate what a difference they will make. I was also worried about my foob flying out unaided.
I have just come home from the Middlemore Oncology workshop. Wow, we got shown the space which they are proposing to use, 4 chairs per room (8 rooms) roughly the size of the Auckland chemo rooms. They are proposing quiet rooms and rooms with TV etc. Separate male and female toilets which aren't part of the chemo room etc. More privacy etc etc etc. I was asked if I would continue with the steering committee as the breast representative - of course! They are hoping to have it up and running in the 3rd quarter of this year. It will free up chairs in Auckland as well. Waitemata and North Shore are both considering similar set ups, good news KT!
Knackered now though - this intelligent, sane lark gets pretty old after a couple of hours - though the lunch was nice.
Have a lovely weekend.
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Hi Michelle. Isn't this a great forum. It's fantastic to have the contact with each other for support. And the bonus of foobs etc being passed around
Nikki sent me some great hats when I was losing my hair last year!Well done with the workshop Nikki! Sounds great- you're a great advocate for us. It would be great to be able to get chemo on the Shore too!
OMG Shazza, trapped for 4 days! Thank goodness you're out now. I hope the oral taxol is worth it & you can enjoy not going in every week.
Have a nice weekend everyone, enjoy your sleep in tomorrow
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Hi Michelle, my ILC is pleomorphic...apparantly not the best to have. Am on Letrozole since 2.5 years, side effects are not too bad.
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Hi Woody, good to know I'm not the only one! I see you had chemo for a much smaller tumour than mine. My nodes had isolated tumour cells and I had the Oncotype DX test, result 22. My oncologist seemed quite certain that hormone therapy alone would be best. I feel quite concerned about this at times (not having chemo), but it's too late now to change it. It's great that you're tolerating letrozole well, I'm finding the side effects are getting worse for me but will keep on with it. How was the reconstruction experience for you?
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Hi Michelle, mine was a double focal one, though the individual tumors werent large, 16mm and 9mm from memory. I think spreading to the lymph nodes is what triggers the recommendation for chemo. Never had an onco type test though, maybe not standard in Hawkes Bay? Did have a good read of my pathology report though. Mine was not really a lump but more a thickening of my breast and they initially thought it was one large tumor, but it turned out to be these two smaller ones with an inflammation around it .
Always felt the treatment, operation, chemo, radiation was a standard one, not targeted to my particular case. The reconstruction I only chose because it was the fastest way to get a mastectomy, something to do with funding I think? Still had to wait for three months...if I could have had a plain mastectomy sooner I would have chosen that. In hindsight I am pleased with the reconstruction, though not completely the same as my other breast in shape, I dont think it is noticible.
No nipple and not keen on an operation (though I did have strange dream recently were where a nipple was created on my left breast and it felt really good- might need to revisit that!). The side effects from Letrozole are stiff joints and numb fingertips on my middle fingers and weight gain, but not to a degree that it is intolerable, think that research on Letrozole for ILC shows that it is the best option and I guess it is all about trying to decrease the odds of recurrence...
Good to see the forum is alive and well, has been a while....
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My son and his girlfriend at her school ball.
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They look fantastic Nikki. His suit is really nice. Btw loving the bras etc. Can't thank you enough.
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Hi everyone, wow it has been busy on here which is great. Nikki you must be so proud of your boy, what a gorgeous looking couple. I'm pretty impressed with you too. It's awesome that you are on that steering committee
Kruise thank you for reminding me about your experience with down below problems, you made me laugh originally with your comment "it's all about the bass". I know it can be a side effect of Tamoxifen, but I just can't help but worry. I had my ultrasound on Wednesday and haven't heard anything yet. I'm sure if it was urgent they would have called me by now. So I guess I will have to wait and see what they come up with? With regards to Chemo and ILC - what I have learned is you only get chemo if there are positive nodes or if the tumour is considered large. Mine at 3.5 wasn't considered large enough and because I didn't have any positive nodes I didn't have chemo. At the time I was kind of relieved but I have wondered if there are any escaped cancer cells floating around that Chemo would have taken care of. Shazza I hope you are doing okay and anyone else I may have missed I'm sorry. I type these posts when I have a break at work and am always in a hurry. I just got back from Beach Hop in Whangamata yesterday. Had a fantastic time with my girlfriends. Was pretty blown away by the amazing cars. Did heaps of walking, ate too much, drank too much and had a bloody ball. Take care everyone, Donna xxx0
