Australian Sisters
Comments
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I wish I'd been able to have it done under a local, general anaesthetics and me don't get on very well :-) I wonder if I can convince them to take it out without a general ... hmmmm... Good luck tomorrow - and remember - don't get stressed about it!
Racy - what a day for your first chemo - I was watching with horror and actually wondering how the people getting chemo that day were faring.
Trish
xoxo
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Lol Trish!
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Racy, I guess you were in the right place for them to see what SEs are really like for the patients at least. Glad to hear your home was safe :-)
Jenn0 -
Geez Racy you had a hell of a time last year.
Glad the port op went so smooth Jenn, hope your oncology unit are running on time for you tomorrow and that you get home at a decent hour.
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Ladies I am curious about something. Reading through the forum posts on various topics, it seems every one else gets the masectomy and reconstruction at the same time. I had read about it before seeing my BS and asked if I could have it and he said he would prefer not as he likes his patients to wait a few years in the event of a recurrance. Now after so many ops Im disinclined to go and volunteer for another and Im quite used to my prosthetic. Did you ladies get the choice?
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Lyndal, I have had this discussion with both a BS and a PS and it seems the common thread here in Aus is that they don't work well together and communication between the BS and PS prior to surgery is nil. I don't know about any other state but that seems to be the norm here in SA. In the USA, they have a lot of specialised hospitals etc that house all medical and surgical specialists and do work together as a team for the patients benefit.
I found all this out when I was looking to have reconstruction about twelve months after my mastectomy but here I am eight years later and I still have no recon.
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Jenn - good luck today!!
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I didn't have any conversations with my BS about recon. I had already decided that I wasn't going to have a recon anyway. I think that Chrissy has described it fairly well. Now that I think about it, the reason my BS and I didn't have the conversation was that he didn't bring it up and I had too many other things on my mind.
After surgery and when I was having a drain removed, I chided him (very gently) on the part of the scar that went around my side looked. I had a fair amount of fat there, and the scar looked awful. I asked him why he didn't remove all the fat there along with the breast so that it looked neat and flat. He told me then he always leaves that there in case I wanted to have a recon. When I said I didn't want one, he said he'd fix it for me in 12 months time. I thought at the time, I should have made my wishes known to him that I wasn't having a recon and it all would have been fixed at the same time, I wasn't about to go back and have another op just to tidy up my side.
I guess if (when!) I lose all the weight I need to the fat under my arm will magically disappear and more surgery will be moot :-)
Woke up this morning to a temperature of 2 degrees!!! Yes - 2 I didn't leave a number off. The coldest January morning in Canberra on record. It has snowed at the Snowies and Goulburn - about an hour north of Canberra had a temp of 0! So much for summer!
Jenn - I'm hoping your treatment is very gentle for you today, and hope you do get out at a reasonable hour.
Trishxoxo
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Trish...lol.....my younger brother who lives in Cambera rang me today and we had the conversation about the cold start to the day and the fact that the pool that Samta bought for the girls has had very little use................so litle in fact that he has taken to filling it with warm water so they can swim!!!! Gosh I'd hate to have his water heating bill when it comes in!
Well my bone scan doesn't look good but what is new is very small and the radiologist is recommending an MRI to confirm. I guess I'll see what the doc says when I see him in the morning. It is what it is but it looks like NED has left the building!
Jenn, I sure hope you had a gentle time of it and I hope the SE's are mild and few.
Love n hugs all. Chrissy
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Chrissy, hoping for almost NED for you.
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Lyndall...my BS and PS had a very good working relationship. I had tissue expanders put it at the same time as both my mastectomies (6 months apart). As soon as it was decided that I needed a mastectomy my BS rang the PS while I was in the office. She stayed after hours and I went to see her the same day to discuss it...(a huge learning curve for me!) Different Drs have different ideas I guess.I was very happy with the result.
Chrissy I hope NED is still with you but if the MRI confirms the suspect area I hope it can be treated successfully...such a stressful time for you.
Jenn....(((( ))))....fingers crossed that all went well today.
Cold here in Melbourne too but not quite THAT cold Trish..brrrr
jezza
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Thanks for the responses, gives me food for thought.
Jenn, Hope your feeling okay tonight and Chrissy, best of luck tomorrow and my fingers are crossed that it was just a smudge on the screen (wouldnt that be nice lol) or its small and quickly and easily treated.
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The scans say wide spread, top of right femur, top of right humerus, T5 and sternum. The femur and humerus are the smallest, T5 the one that is causing most pain and the sternum he's just not sure about, said it may be calcium deposits but either way, I have a feeling it will be a change of meds for me......ugh!!! and possibly some rads to the T5.....we'll see tomorrow.
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I dont really know what to say Chrissy. Just sincerely wish you didnt have to go through this and hope that you stay strong and get the best care available.
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Chrissy, I too am very sorry to hear the extent of the mets. I echo what Lyndal said.
Jezza, I was in Melbourne between Christmas and new year and the weather during the days was excellent, though the nights were still a little cool for a Queenslander. Overall great holiday weather though.
Glad your medical care was well coordinated. I was concerned when I read here that may not be the norm. Fortunately I had a lumpectomy but I feel for ladies facing mastectomy who may want immediate reconstruction and can't get it.0 -
Oh Chrissy - definitely not the result you (and we) were all hoping for :-( {{{{hugs}}}}
regards Jenn0 -
Update for me: Good meeting with the onc this morning. Agreed that rather than 3 x Taxol 3 weekly will have 12 x Taxol weekly (less adverse effects and better progression free survival stats). She wrote me a permission note to get massages that I can take to my usual place just in case they baulk at massaging someone getting chemo.
I gave her the printout/ recipe for Scream Cream (there's a thread on it here). She'd never heard of it and was a bit dubious - but has said she'll look into it...
Started chemo finally at 4pm. I had taken a whole cold bag of ice cubes and sucked on them the whole way through the epirubicin, 5-FU, and cyclophosphamide. Meant I didn't taste any of the nasty tastes :-)
Drank so much water today...
Felt fine on the way home. Ate a very small dinner and had a yoghurt cause my stomach was feeling funny. Now in bed and my entire enteric system is definitely acting up with random pains in stomach and intestines. My eyes are also feeling irritated and dry already :-(
I have Emend and Kytril to take in the morning and then again on Saturday. I have a whole bunch of Maxalon with no real instruction when to take them???? I had dex in the drip.
Anyone got a recommendation forvhe Maxalon? Should I take it now since my stomach is hurting?
regards Jenn0 -
I cant remember which drugs I took so i got my old presciption book and found an entry saying every 6 hours for Maxalon, Hope it helps Jenn.
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Hey Jenn, I have a box of Maxolon here. It says take one tablet three times a day. I had it for nausea. Not sure if it's for other digestive problems.
It can't hurt to try one though. They work quickly.0 -
I only took two of those tablets throughout chemo as I only felt I needed them twice.
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Chrissy - I sent you a PM
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Chrissy - I'm hoping and keeping everything crossed for you that NED comes back and it's only a temporary departure (((((hugs))))) to you xoxoxo
Jenn, I didn't have maxalon - at least not in tablet form, it was in ampules to use as a last resort if the other tablets didn't help. I was told by all the medical team to take whatever I was given even if I didn't think I needed it. It's better to stop the nausea from starting. Once it's started it's harder to stop it. Take everything for a few days and see how you go.
I found on the FEC that the day of infusion I would feel like a truck had hit me around 4 hours after the infusion. I'd sleep through it and go to work the next few days for a few hours. For me the worst days were days 4 and 5. That's when it was at its worst, and I couldn't work those days as I was on the loo almost all the time. Then I'd go back to work and could manage around 4 or 5 hours a day until next infusion. Don't forget to suck on jelly beans - they really help with keeping up the glucose in your blood and give your tummy something non confronting to deal with. Keep the water intake up - you'll need to do that all through the next couple of months. ((((hugs)))) to you too!
Kate - how are you going? Breasts any better now?
Trishxoxoxo
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Ive been thinking of you thru the night and this morning Jenn. Hope you got a decent nights sleep and arent too sick today. If its bad, remember you can get through this - you wont feel this crappy the entire time. It does abate thank god. Nibbling on a sao biscuit without any spread occasionally can get something into your stomach that isnt too objectionable. If the nausea is bad, very small sips of water here and there are still vital to keep you hydrated.
Just remembered too, constipation hit me around day 3 or 4 so if you can start taking a mild dose of something to help now so it doesnt build up to that extent. Take too much and you will have diarhoer cramping which sucks as well. But a mild dose of a stool softener can only help down the track.
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Hi Trish - yes I think they have turned the corner, still a bit tender but very manageable indeed.
I do have a cold though - nothing bad, but I was surprised given the anitbiotics though that I would have caught it (from my dear family, thanks muchly
Chrissy - I've got everything crossed for you... and so sorry to hear of this set back. Hopefully it will only be a temporary one.
Now, I have a bit of a question I need your help with please. I just need some opinions, and right from the get-go can I say that I am not "chickening" out of chemo/herceptin + 5 years of whatever it is I will need to take, but I want to make an informed decision.
My cancer is apparently all gone from the breast. My BS was almost certain. In fact when he did the lumpectomy he said there wasn't any evidence of it and it must have all been removed from the core biopsy vacuuming they did. Nothing in the SN either. So effectively I don't have cancer in the breast anymore. I do understand that there might have been some microscopic cells that 'might' have slipped through already via the blood stream and could be lurking somewhere else, but I wonder really what would the chances be of that.
I guess I am just at the stage of wondering if the trauma of being on a drug regime, in my case, where I don't have any evidence of cancer (it would be a no-brainer if I had a tumour, or even if it was in my margins) is really going to be of benefit to me.
Unfortunately I don't have a crystal ball. So I don't know that anyone will have the answer to this. I have my MO appointment tomorrow, so I am going to of course put this to him, but I am supposing that he will probably err on the side of what he is experienced in doing, and if he says, you must or really should have it... then I am still not sure if my case really warrants it.
I don't for a moment say that I won't be undertaking the treatment, but I don't want to just blindly jump into something that the experts say I should have. I know they know what they are talking about, I'm not downplaying their role, but I don't have any cancer left!!!
If you were me, with my diagnosis (the HER2+ is the real kicker I think) would you be questioning this too? I don't want to look like I'm not a cancer cheerleader here. Far from it. I admire everyone so much here on this board. But I really would like to make a well informed decision and not just jump in without exploring the validity of it being really necessary for me.
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Hi Kate
Everyone has to do what is best for them, and you will have to make your own decision about whether you do or don't go onto a treatment regime.
My dx is almost the same as yours - except I had a micromet in a lymph node. For me, it was a no brainer to do the chemo/herceptin/hormone treatment. HER2+ is not something to be taken lightly. Just because your tumour was small and apparently hadn't spread doesn't mean there isn't a chance (and a fairly high chance with HER2+) it won't come back. My stats for being alive in 5 years time with no treatment was 65%. With the full treatment it went up to 93%. As I said - for me it was a no brainer.
It's unfortunate that to have the Herceptin we have to have chemo to go with it, as it's the chemo that's hard to get through - not the Herceptin. But studies have shown that it works better when used in conjuction with chemo. The Australian Government won't pay for Herceptin unless it's used in conjuction with chemo.
As to the 5 years of (probably for you) Arimidex - again - it improves your survival rate a lot, and to me worth the se's.
I would hate to find out in 5 years time that the bc had come back and I hadn't done what I could to make sure that didn't happen. If it comes back after all the treatment I've done - at least I know I've done everything I could have, and wouldn't start playing the "what if" game.
I think I told you I had a friend who had a similar dx to me and she did chemo and Arimidex but not Herceptin. No-one is really sure why she didn't get it, and she didn't know enough then to ask about it. She finished her 5 years of Arimidex in October and found out she had liver mets. I don't want to be in that position.
Yes the chemo sucks, but all in all it was just over 3 months of my life, and if 3 months of hell will give me another 20 or even 30 years, then I'll take it.
Just don't talk yourself into thinking that just because all your cancer was removed during surgery you are ok. It can still be going around in your blood stream, or microscopic cells can be still in your breast. You just don't know.
Hope this helps, but you need to make your own decision, and whatever your decision we will support you. Remember though, that for you chemo may be very gentle, you just don't know. You have to suck it and see lol.
Trish
xoxo
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Jenn - don't take a stool softener until you see which way you are going to go. Some of us have constipation and some have diarhoea - I had bad D and if I'd taken a stool softener then I would have been worse.
Sorry Lyndal, don't mean to jump on your post, but not everyone is the same. I have had constipation once and I really don't know which is worse - I think they both really suck :-(
Trish0 -
Jenn - sennacot worked for me. Definitely do not let yourself get constipated - I have a very bad memory of that - I termed it like giving birth again. Sorry if that's TMI
Kate - I agree with everything Trisha said. HER2 is VERY nasty and we do have to do everything we can to prevent distant recurrence. I only had to read a little bit about it and jumped at the chance to do chemo/herceptin. MY onc said I had a 23% chance of recurrence and the treatment would halve that - that's a big enough advantage for me.
Sue
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Kate,
Last week I questioned it all too.
What if I happen to be one of the ~40% of women with Her2+ that do survive 5-10yrs with no further treatment? If that's the case why would I put myself through all this, with the short and long term side efects affecting my quality of life?
What if I turn out to be one of those Her2+ women that put themselves through all the treatments, for whom they don't work, and yet they still progress quickly and die. Having ruined the last part of their lives with treatments that impact negatively on their quality of life?
What if I'm one of the women for whom all this does work and I bring my chance of being alive in 10 years to 80 something % and I do finish my uni degree (2yrs to go) and I do see my daughter finish uni, find a career and a great life. And I do share some more wonderful years with my husband (and we navigate the early menopause (would have happened anyway soon) etc etc which I'm sure we will). So many things I could fit in with a bit more (almost) guaranteed time.
I voiced all of this to my husband and my psych onc last week, and they both pointed out that despite their opinions I was going to have to be the one to weigh up the numbers and either choose to sit in that chemo chair, or not.
I spent the week looking at the charts, asking questions here, and really soul searching - and on Wednesday this week I had the port installed and yesterday I threw on my big girl pants and sat in that chair and allowed them to pump all those things into me. I had to be very brave...
Today I am sitting in a nest of beanbags on our deck overlooking the bush. I've taken 8(!) tablets today, not to mention the spoonful of olive oil (to coat my mouth and digestive system and the half small bottle of prune juice :-) I don't feel "normal" but I did go out for a 2.5 km walk with hubby and dog this morning and I've hung two loads of washing. I can tell my enteric system is not right, but i don't think it's made up it's mind quite what to do yet ;-)
It's not so bad, it's a beautiful day, and I'm being pro-active and doing something and I feel good about that.
You will need to make your own decision, but know that you are not alone :-)
Jenn0 -
PS Kate: I had a brain, chest, abdo, pelvis CT scan and a bone scan after my surgery and no sign of any cancer anywhere else. But those Her2+ cells are sneaky buggers....
Try these if you are interested in numbers:
http://www.biomedcentral.com/1471-2407/7/153
http://jnci.oxfordjournals.org/powerpoint/101/10/736/F5
http://canceraustralia.nbocc.org.au/download-document/hrsrw-trastuzumab-for-her2-positive-breast-cancer-a-systematic-review
Jenn0 -
I forgot to say that now - 14 months out from my first chemo, I feel really, really good. Almost wonderful in fact! lol
Still some aches and pains, have to be careful getting up after sitting for too long (everything pops and hurts), but after 4 or 5 steps I'm loosened up enough to walk properly.
All in all - life is pretty much back on track.
You, Kate and Jenn are at the beginning of this pretty awful journey - but let me tell you there is light at the end of the tunne - and it's not the train coming to run you over - but a return to a happy healthy life. It just takes some time. But worth it.
Jenn - glad to hear you aren't feeling too bad at the moment. You may be ok tomorrow too. Like Sue said though keep an eye on how your bowel is going. If you haven't gone for a day then try a senacot - you defenitely don't want to become constipated. Just don't jump in too soon with them in case you don't need them.Trish
xoxo
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