Hello every one, I wish you a happy Sunday
Bev, Thank you for all your positive comments. The statisics do seem to be on my side so I don't know why I am still shell shocked aout my triple neg results, but I suppose still not knowing what the next step will be, doesn't help. Mind you a friend who was triple negative died a few weeks ago after a battle almost non stop since 2005.
Aqua, Thank you for your thoughts, my boys have been great and I've got some good friends too. But as one of then said, when you live on your own there is no-one to disturb you in your thoughts, and they do tend to get out of contol sometimes.
Sandra. Thank you for asking for my news, I was really touched. Yes I have been more quiet, but I am still here reading everyones posts and re-reading everyones messages on my posts.
Well... 1.1cms is tiny and no nodes is the best news! The fact that you're triple neg now just means that hormone therapy won't work this time so chemo may be the way forward, but they'll take other things into account too before deciding on your course of treatment but it sounds like its been caught really early.
This is the reverse of what happened to me. I was triple neg in 2005 and had chemo and rads but this one last Sept was ER+ and as it was only 1.4cms, they said chemo wasnt really of any benefit this time.
So I can take Tamoxifen for this one.
Keep your chin up....try not to worry about the triple neg thing. I have 2 friends both triple neg...one is now 8 years since diagnosis, the other 10.
Love Bev xxx
lymphovascular invasion you will sometimes see it written as LVI is when some cancer cells have been found close to the tumour but within the lymphatic vessels or the bloods vessels or sometimes both.
this means that somebody with LVI has a slightly increased chance of the cancer spreading to other parts of the body, its often not taken into account when deciding on chemo regimes but i think more and more oncologists are using it as a means of assessing the risk of recurrence or spread and helping the team decide on the best course of treatment.
the main route for recurrence or spread is through the nodes but with lymphatic invasion it hasnt quite made it to the nodes yet as its still in the vessel and likewise vascular invasion means its in the blood vessel at the site of the tumour.... but what they cannot see is if microscopic particles break off as these could travel around the body within the blood or lymph fluid.
i hope that makes sense.
Thank you Sandra and Lulu,
Sandra, you made me laugh, thanks. That's just what I said to my Mum on the phone, very fast, appointment only about 10 days away. I'll probably feel better after a nights sleep.
Lulu, I realized that we had a lot in common and sent you a private message. What is lympho vascular invasion ?
Love to you all
that sounds very like me, my first one was hormone positive but my 2nd one was triple negative.... as its triple negative there isnt really much other treatment options after surgery except chemo and rads.
like Bev i didnt need chemo with my hormone positive one, which i had in 2006 as i had no nodes and it was only 1.3cm
but the cancer i got in 2009 was 1.9cm plus areas of high grade DCIS, and lymphovascular invasion, although node negative i still needed chemo.
yours is small and its good there is no nodes, but triple negative cancers dont respond to hormone therapy so it pretty much means you would need chemo.... i was on tamoxifen at the time i was diagnosed with my new primary, and im back on it now as i hadnt completed the 5 year course for the first cancer.
hope you are recovering well, and good luck with your onc appt.
ps there is a triple negative section in the forums too especially for us TNBC ladies.
Good News? well no nodes has to be good! don't know anything about triple neg. but l am sure you will have lots of positive messages from those that do!
At least that is another round over, Yes the waiting game, only 12 days to wait, and if you say it quickly it doesn't sound so bad!!!
Bit of useless information for you, the 3rd of May is our 'Spring Bank Holiday Monday' Bet you wanted to know that!
It's different this time: triple neg, 1.1cm and no nodes. Is this good or bad ?? I'm so scared.
No wonder tamoxifen and arimidex didn't work. The surgeon just said there is no more surgery to be done. Well I suppose that is a relief but I don't see the onc until 3rd May and he apparently follows the USA protocoles, so I still don't know what I am facing.
Bev thanks for your thoughts.
Love to you all, Maria
I'm sure you're much more comfortable now with the stitches out. I'll be keeping my fingers crossed for you today and praying the results will be good. Take care.
Love Bev xx
Thank you so much Bev
I've just read the words and listened to "Hero" It really is our anthem isn't it ?
I've had my stitches out this moring and looking forward to a bath tonight, I hate half showers.
I'll let you all know what my next move will be when I see the surgeon on Wednesday.
It seems a lot of us are waiting for results on Wednesday. SO GOOD LUCK TO ALL
Ps hello to Lulu, Jane, Sandra and Monica and sorry if I have missed anyone out
Hi Marial, don't assume you'll have to go through chemo again...! I didnt need it this time as lump was only 1.4cms and ER+. They said I'd have only a 2% benefit from chemo but an 8% benefit by being on Tamoxifen. I still had the choice if I wanted it but who would want to go through that ordeal again for an extra 2%?? My prognosis is very good again this time so just have to get on with things again.
Waiting for the results has got to be the worst feeling on earth.
I was positive that I had lymph involvement the 2nd time and thats why I asked for axilliary clearance but turned out they were all clear again!
So we just don't know do we? I'll be keeping everything crossed for you this week and will look on here later in week for your post and I'm sure you'll be telling us that things were better than expected!
You've got a lot of healing to do now from the surgery so just concentrate on that. This is the roller coaster all over again with emotions all over the place.
Do you know what....on your down days, do what I do. Someone bought me a copy of Mariah Carey's "Hero" when I was going through this the first time and I'd never listened to the words before. When I played it, it made me cry because it was so true but it does lift you and gives you back your fighting spirit.
Give it a go.
Love Bev xx
Just re-read your other comments, so i do know here you are. !! Brain just doesn't work well at the moment, but re-reading all your comments it's looking like it will be chemo again for me
Love to you all
I'm 10 days post op today and my stitches come out tomorrow, I am sure I will feel better after that. However I shall hopefully feel a lot better when I get my results next Wednesday and I know where I am going. Driving 100 miles was not difficult, it gave me something to do, the day before the op, and the surgeon managed to find the sentinel node even though my anatomy is not text book stuff !!
How far down your road are you ?
Best wishes, love Maria
Glad I could offer some support and hope you feel stronger day by day. Feeling tearful is understandable and absolutely normal, but as time goes on there'll be a lot more good days believe me. Just take each day as it comes. You must have been worn out driving 100 miles in one go. I was lucky that my treatment was carried out only 5 miles away in a centre of excellence. My hospital where i had surgery was only half hour away.
I'm sure the op will go well but if you feel like e-mailing me again to let me know how things have gone, please do, via my personal e-mail address. I can understand how traumatic a time this is for you and I've had many a sleepless night myself,I can tell you! try not to worry love and take care.
Sending you a big hug.
Thankyou so much for your positive thoughts, I am so glad all is now well with you. It gives me something to look forward to, and for the tips on swimming prosthesis. I have always bought my stuff at nicolajane.com. Never knew ASDA did stuff too.
I went for my radioactive injection to find the sentinel node today, had to drive 100 miles round trip, and they couldn't find what they were looking for. Not a bad sign they said, just that my anatomy is not the text book sort. Great, I thought, but I am a bit tearful now, so glad when it will be all over, the op, I mean. Each stage, at a time.
Lots of love to you and every one else who is rooting for me. If i can't sleep tonight I'll be back, if not it will be next week, look after yourselves.
Sorry to hear you have to go all through this again. I had grade 3 triple neg tumour in 2005, had lumpectomy and sentinel node biopsy. Clear margins, only 3 nodes removed but all were clear. Had 6 chemo and rads and all was well until my routine mammogram last August when another lump appeared right on my lumpectomy scar! I assumed this was just scar tissue so was really shocked when they told me it was another cancer.
Had mastectomy and axillary clearance this time (my own choice). Results showed no lymph nodes invloved again but turns out this was a new primary (ER/PR +)not a recurrence of the triple neg one! So now on Tamoxifen and back in work full time since January and doing well.
I'm sure you'll be fine but its the initial shock again and I know I started worrying about whether it will come back a third time, but as we all know too well, no point in wondering "what if"!
By the way, I go swimming quite a bit too - have you enquired about a swim prosthesis instead of using your softie? You can buy them for about £40 but I mentioned it to my BC Nurse and she said that if a patient swims a lot, they'll provide a swim one on the NHS.
It's just clear like silicone and fits in the post-surgery swimsuit. Just get a size smaller than your normal one. Worth asking for.
Also, George.com (Asda) do a lovely post surgery swimsuit and a tankini on the website. I have both. Only £12 each.
Keep smiling and just think of this as a glitch and you'll be on the mend soon!
Love Bev xx
Yes Dawn, Thanks for your comments, I know I will come out the otherside OK. But at the moment it still feels a bit unreal. Just bought me a new packet of knickers for while I am in hospital, sorting out my sponge boob (used for swimming) to use after the op and a bra with double pockets. Reconstruction was never an option for me. I can't bear to get out my wig though.
Monica, I am not realy up on all the treatements, all I know is what I took, but it's good to know there is more stuff out there
yep, I took it for 5 years, and I'm taking it again now til I've had the op then I'll go on to letrozole. I'm kind of philosophical about it all at the moment, I'm doing everything I can to stay well, but if it comes back, I'll deal with it again, whatever form it takes.
Dawn, your attitude is inspirational!
love, monica xx
It certainly is a roller coaster! I hope you are finding some encouragement from those of us telling you about our recurrences and that it doesnt necessarily mean bad news - well it is bad that it has come back - but some of us go on for a good few years once we get over that bit. Daisyleaf, like you I found that it wasn't so much worry that it came back but disappointment that I had to go through it all yet again. My first diagnosis was in 1990 and I went 5 years free of it to have it return. I have since then had it return a few more times as well! but I have found that I just got on with it and came out the other side each time ready to take on life and all it had to offer. Wishing you good luck marial for the op on the 8th.
Daisyleaf, you echo my thoughts exactly. I even kept a packet of new knickers just incase it came back ( and I had to return to hospital) , but used them after 5 years, telling myself it was over. Now that I am getting to grips with the idea, I am wondering why i took tamoxifen and then arimidex, I thought they were to stop recurrence. Did you take them too ?
what a bummer to find yourself back in this world, I'm so sorry you've had to join us.
I'm another one who joined the forum after a recurrence, my original diagnosis was in 1997, so at least I had 12 years in between.
I had my mastectomy and axillary clearance then, but this time had chemo and radiotherapy after my lumpectomy and am having my ovaries removed next month.
Things have changed so much, haven't they? and for the better,in terms of whats available, treatments etc
Its very strange, second diagnosis, isn't it? In some ways, its not such a shock but in others, its so bl**dy disappointing and disheartening - but its always scary. As the others have said, the waiting, for results, appointments, ops, etc is what seems to get us most.
I hope your op goes well and that you get encouraging results from it
let us know how you go on, and take care
love, monica xx
ps everyone, chocolate is full of iron (I think!)
Hi Lulu, Jane and Sandra,
Thank you all for your thoughts,I need them right now.
Just on a positive note, not only do you loose weight, during chemo, you save a fortune on hair dressing bills and waxing too !! I don't know if I'll need chemo this time, but I expect so.
Look after yourselves.
maria i had BC for the second time last year and it was a grade 3... i had a sentinel node biopsy and radioactivity but it was all done during surgery when i was out under GA anyway.... the tumour was 2cm and my nodes were negative.... i was 37 first time and 40 the second time.
after surgery i had chemotherapy for 6 months and then rads x 25.
good luck with your op... hope you get some positive news about your results.
hi my masectomy was in 2004 no chemo but had tamoxefen this jan could not believe had it in the other side had had sentile node biopsy like you had lumpectomy no lymph node involved so no nodes removed having chemo next fri dreading it it is all scarey stuff good luck with your op Jane x
Welcome to our world! not for the first time for you l see, but you have done really well up to now, so positive thoughts and love are being sent your way.
Good Luck for your op, wont be long now! and then another hurdle over, it is all the waiting that is a big worry.
Yes things have certainly changed since you were last diagnosed, l noticed the change, l went through this with a friend 10 years ago.
I had a lumpectomy 10 days ago, my results were not good 16/18 lymph nodes were positive, l have now been told before l have chemo, l need to have more of a margin taken away, as there are pre cancer cells still there! l am due to go in on the 14th.
The only good point is if you need to lose weight it certainly helps with that!
Hopefully Easter will make the weekend go quickly for you!
Love and Special Thoughts to you and all those you hold dear
hello all you lovely ladies. At last my op is set for next Thursday 8.4 What an emotional roller coaster so far, you all know what I mean.
How things have changed in 7 years. I've got to go for a radio-active injection the day before so that they can find the"sentinelle"lymph node and therefore I should not be so uncomfortable under the arm , this time, as they won't have to scrabble around to find what every they are looking for. I was shocked to learn it is grade 3 again, don't think last time the biopsy could tell what grade it was.
A lot of you seem to know what you are talking about, but I dare not ask for your opinions, in case my chances are not good, but any positive thoughts would be very welcome over Easter.
I've lost my appetite since my new diagnosis, but I wish you all a Happy Easter with lots of Easter eggs and love from those you care about.