**Tamoxigang counting down to Easter eggs- thread 48**

[BetsyBoop]

throws some hot cross buns on the trolley

[weebarra]

Sorry to hear your news really, you're always amazingly strong on here.

[BetsyBoop]

Oh and speedy - step away from google! We've all done it at some point and all it usually achieves is scaring the pants off you. Much of the information you find is so way out of to be useless and irrelevant as treatments have moved on so much in the past few years.

[Wren48]

Speedy, Betsy is right. step away from google. And ((hugs)) to you as well. It's a horrid time.

[Tiny100]

Hi Speedy, I have TNBC too. Patricia Prijatel's FB page is a much more positive read, in fact her latest article addresses the language that is used to report TNBC.

Surviving Triple Negative Breast Cancer

[smee]

Speedy I know I'm being anecdotal, but I met two TN women when I was diagnosed 4 years ago and they're both well happy and clear. Not denying it's scary, but step away from google as Betsy says and trust your team. You'll be me reassuring people in a few years time.

[MomOfTwoGirls2]

Did anybody suffer hearing loss as a SE?
I was referred to Audiologist because of ringing in my ears. I thought the ringing was just chemo SE, but it turns out right ear is functioning at 90% but left ear is functioning at 95%, and that imbalance causes the ringing effect.

Audiologist said I'll just get used to it and will tune it out eventually. I'm in the system now, and they will monitor again in six months.

When I'm busy with anything I don't notice it.
The first time I noticed it was when I was hospitalised with neutropenia. I always thought it was worse during week 2, when my bloods are lower. But I guess that is the only time I have quiet time...

[MomOfTwoGirls2]

Forgot to add, I actually thought my hearing loss would be more dramatic. I struggle to hear the children clearly if there are other competing noises around.

And my eyesight has dis-improved also. I am wearing my glasses much more than I used to. Chemo nurse told me to arrange for eye test shortly, now that chemo is over.

Finally, hair is coming back. But it is snow white. Not a single strand of brown visible.

With all if the above, I feel like I'm getting old before my time. I'm (only) 48.

Sorry for the moan, nothing major, just bloody annoying.

[BetsyBoop]

Mom I can't remember anyone mentioning hearing loss before, but I know a few of us where eyes went a bit odd with chemo. It does settle down, but I know that I wear reading glasses a lot more now, when this time last year it was only very rarely I needed them for tiny print. I'm that sort of age (47) like you, so hard to say if it was chemo or just getting old...!

Psst tiny, I replied on your other thread :)

[Wren48]

Mom, I remember tinnitus being mentioned as a SE, and I've had that a bit (I'm a bit prone anyway), but maybe what I've had is similar to you and what I've got is hearing loss. I'm about the same age as you and the eyesight thing is definitely as likely to be about age as about chemo! I was advised that my eyes would be a bit different in chemo, but that it would resolve afterwards.

[reallyreallyworried]

First day of Rads for me!! Feeling a bit nervous, but I'm sure once I've met the team, I'll be fine! (must be my turn for things to run smoothly!)

malt good luck with your first day back teaching! ENJOY xx

[malteserzz]

Really you'll be absolutely fine, just lie still ! That and the travelling are the only hard bits Thanks sure I'll be fine too, bit nervous but looking forward to it x

[amberlight]

Speedy, have you been Googling? Move away from that Google! It has many fine qualities as a search engine if you are after a nice recipe for Spaghetti Bolognese or pictures of Brad Pitt (as I understand it). But as a tool to tell you your odds, it's less accurate than standing at the pub exit last thing on a Friday night and asking the people who are staggering home. Google brings up the most common answers. They are most common because they are based on the oldest and most useless data. Almost everything has changed in Breast Cancer in the last couple of years (new genetic stuff, targeted personalised medicines etc) and the new treatments are so new that the statistics aren't anywhere online at all. Worse still, some teams had a negative attitude to TNBC in older women and just didn't even bother with chemotherapy and radiotherapy (!). Unsurprisingly, more of their patients had a bad outcome. So...that's why some of the stuff online ended up looking really negative.

What we know for sure is that TNBC (Triple Negative Breast Cancer) is a rudely behaved one, but it's also one that 'runs out of steam' fast. Rudely behaved cancers are also thirsty and drink up chemotherapy fast. As a consequence, they cop it fast, too. So chemotherapy tends to work better than for other people.

What the team will watch for is how effective the chemotherapy is. In some people, it doesn't work. Those are the head-scratching cases for a team. They will use surgery and radiotherapy to do the job instead and look to get really good 'clear margins' round the lump when they do surgery. If they think they've got it all out, that's a very good sign. They will also look for any of it creeping back, and then try out some of the new potions that are in trials. (Some are looking good in the early trials - I watch the research papers)

In some cases it shrinks the lump quite a bit. That's also good. They can then target it with surgery, radiotherapy and other potions (if available) and improve the odds further.

In a good number of cases, the lump disappears completely after chemotherapy. This is called pCR. This is where the team does the Dance of Hurrah in the hallways and you're pretty much guaranteed a long and happy life.

So, each thing you're told about your breast cancer at the start doesn't exactly make it better or worse as an outcome - it is information for your team so that they know which treatments to use.

Hope that helps....

[amberlight]

PS I am not a doctor. I just read the research every day and have been through a rudely behaved sort myself, and been on here for years...

[weebarra]

Amber, you are great! When I first found out it was TNBC, I thought I was going to die - soon. Now I know that if I stay disease free for a few years, I should be okay and if not, well, it's the kind of bc that's v popular with researchers atm.

[harrietv]

Hi biggerbuns I'm doing really well thanks. Big turn around in last couple of days - getting used to my new implants, off pain killers and sleeping (on side) becoming easier every day. Mum leaves today and I feel ready to cope with two DCS of 5 and 7 after/before school on my own - this is day 11. Struggle slightly to get stuff off top shelf still and can't use too much power in arms (so chopping potatoes a bit tricky) in case I bust internal stiches but other than that, and napping at lunch time, I feel good. Hope that makes you feel less nervous about recovery. I remember foofoo advised help for about 2 weeks too. I concur.

Turned out my mx decision was a good one. There was 3.5cm more DCIS further down the duct that was invisible on mamo and ultrasound. Right into my nipple. So 7cm in all. It's the highest grade, with all the 'bad' features of DCIS before it turns invasive so feel a) very lucky but b) nervous in case pathology report missed any microinvasions. Also feeling concerned about my narrow 1mm margins between chest wall and also at skin (I had tiny boobs so at one point it was all pretty much DCIS). UKSounding the different treatment protocols in diff countries are interesting/confusing. I've done quite a lot of my research on the forum you mentioned and in US, women like me (age, agressiveness, small margin, necrosis, large DCIS) are offered radio after mx to prevent an invasive recurrence, although the studies which point to this treatment are limited in a number of ways. Have potentially my 'final' appointment with my breast team this week before discharge to yearly physical exams. Plan to try and take all my concerns with me. My BS'll be wishing he stayed home and had a .

really blimey. You're a strong woman and I know you'll get through this- what a good gut instinct to continue with your chemo last time. I'm so sorry that you're in this position though, and angry at your hospital, it's better we are than you are. You need your energy for better things.

[foofooyeah]

Amber - you do make me laugh, I can just see you peering over your pince nez in a disapproving fashion.

Your are very reassuring

[kitkat1967]

yes - I always picture Amber's diapproving expression and it makes me smile!!

Good to hear that you are on the mend Harriet and like you say a good decision to get rid - hopefully you will have a bit more piece of mind now.
I don't know much about Rads - I had 4.6am lump which was medium grade DCIS with 1.3cm grade IDC in it. I had mx (and chemo) but no Rads. My onc consulted with a clinical onc who is a professor due to specialism in Radiotherapy and he said no to Rads. In fact he said I didn't even qualify for a trial that they are running at the moment to give Rads to ladies who they previously would not have included. So an emphatic No which was good enough for me.

[kitkat1967]

sorry Harriet - that was meant to say grade 2 IDC. Plus the IDC was not near the edge of the DCIS and I had plently of clear margin round the DCIS as well.

[difficultpickle]

Survived biopsy thanks to sedation. They always struggle as I've got tough bones! They warned that it is almost certain I will have to repeat the in patient chemo before I can go ahead with the transplant. This is because the more chemo they can give me the better my chance of staying in remission after the transplant. They won't review the biopsy results before the end of next week which means I'm at home until at least 7th April. Means I get to spend part of Easter hols with ds (he breaks up this Friday).

[Tiny100]

I am currently trying to decide what surgery I should go for and have started another thread. I think I may have put people off responding because it is headed up Triple Negative Breast Cancer, however I am looking for input from anyone who has gone through breast surgery. Thank you Betsy and Smee for sharing how you made your decisions.

The Thread - please respond if you can!

Harriet - Good to hear that you are on the mend and that your surgery decision turned out to be the best one for you.

[Wren48]

pickle, well done for getting that biopsy out the way. And it's so great that you can just have a tiny breathing space and spend time with ds in the holidays. You must both so sorely need it. Another round of chemo is not so cheery, but improving chances is the thing.

[difficultpickle]

I'm not looking forward to the thought of going back and doing what I spent the last 5 weeks doing. It also means my transplant will be delayed and I'm most likely to end up having that in June/July. I was rather hoping I'd be having that in May and could spend the summer at home recovering.

The one piece of good news I got today is the London hospital ward has its own chef so the food is good and if you want something outside normal meal hours there is someone to make it for you.

[kitkat1967]

hello Pickle - if you have to repeat your in-patient chemo are you going to swap to the London Hospital after your horrid experiences last time?

Tiny - I didn't have the option of a BMX but would have had one if it had been possible. I figure once you've had one breast chopped off you may as well have 2 if it reduces your odds of getting BC again. Those papers linked to on your other thread were fairly conclusive and very interesting.

[Wren48]

Pickle, yes, I completely see that the timing messes with your summer. I spend a lot of time counting on my fingers when I might end treatment and what that means for my children's summer. I also now cry every time I go into hospital, and that's just the consequence of normal chemo, so I guess that 'not looking forward to it' is one of the understatements of the year.

Is the London hospital where the transplant takes place? I think a chef is an inspired idea and I'm glad that there's one thing that will work in your favour.

[difficultpickle]

I'd stay at the local hospital as it will be so hard for ds to visit me in the London hospital (at least a 1.5 hr drive). At least I will have a better idea of how to manage foodwise (ie not rely on hospital food for anything other than breakfast!).

I'm relieved that the London hospital food will be better. Apparently patients used to refuse to go into hospital for treatment because the food was so bad!

Timing wise I doubt I will be back at work before January rather than working from home in September as I had originally thought.