Awh Thanks so much Val and Mo, both of your posts on here throughout treatments last time round kept me going on here , the class of 2006/20007 was very special to me with such a wonderfull group of ladies keeping each other going, dont know what i would have done without you all!! i often think about you all and wonder how you are all getting on, im realy sorry Mo you had to do chemo again , but i think like you say maybe in someways it will be easier than the first time round, and at least ive learnt pleanty of tips along the way now from everyone here, and im sure i will also do much better on 3 the weekly cycles, thanks so much you two, and for holding my hand Val,i know il be fine when everything gets started and i can get my head down again and just get on with it .
Lots of love and massive big hugs to both of you.
Linda xxx
With you today Linda,hope everything goes ok, big ((((hugs))) Melxxx
Hello Linda,
I am from the class 2003/2004 and 2010/2011. I don’t come here very often any more, but I felt I just had to say, life is so unfair, but you will get through, just like last time. I found it harder the first time, but felt gutted to find I had endured tamoxyfen and arimidex for nothing, only to find out my 2nd primary was triple negative, so maybe I didn’t take them for nothing. I am actually NED, but still get checked every 3 months. Take care of yourself.
All the best to you all, many of whom I regonise from my time here in 2010 but no one from 2003, so I must apologise for having left you,
Hugs Maria
Hi Maria, its so lovely to hear from you , like you im a bit worried that the hormone therapies have not worked for me either,but maybe they have as am still clear in my first BC side at the minute?, am a bit worried that this new primary may be tripple neg too and maybe thats the reason why the hormone therapies havent kept this one at bay, but its no good second guessing i suppose , i will just have to wait untill weds for the final path results.
Am gutted also to have it back again ,not sure how common it is to get BC again in the opposite breastl, i remember being told there was a small risk, but i think hormone therapies also help to reduce that risk by about 40% if i remember rightly, so quess we were just very unlucky tut, am so glad to hear you are NED Maria, hope you are doing ok, its lovely to hear from you again, big hugs to you.
Linda x
Hi Linda sorry you have joined the new primary club! You mentioned the risk of getting a new cancer in the other breast being low and it is around 5%. So it’s not very common to happen… However those with a gene mutation are more likely to have bilateral BC especially if they develop under age 60. There is a research trial you can take part in which checks for BRCA1&2 which I can give you details of if you think this might be something you wish to pursue… My first primary was hormone positive and second one TNBC and scared myself silly over it but have since had a recurrence And I’m just not so worried anymore… Getting it the second time was Hell! It’s everybody’s worst fear… Finding out you have cancer again. Take care xxxxx
Hi Lulu Thanks so much for your post, Yes id definately be interested in the trial you mention, though i dont know anyone in my family mum or dads side that has ever had BC, so would i still be eligable? if i am please could you send me the details as it would certainly be something id like to check for if were possible,
It certainly is awfull getting BC for a second time, i always knew there was still a risk of reocurrence with BC, but didnt realy consider getting it in the otherside so much, and with each yr that passed the risk reduces doesnt it and my surgeon told me last yrs at the 5 yr mark the risk reduced significantly, its all blooming rubbish isnt it, but hopefully with the new research comeing out like the finding of the 10 sub types of BC now newer and more personalised treatments will be on the horizon very soon for all of us.
Hope you are doing ok Lulu, Thanks for any info you can give me about the trial.
Linda xx
Hi Linda
Normally you need multiple family members to be offered genetic testing however because the incidence of bilateral BC is so low in the general BC population and high in the genetic population the trial considers it to be a possible indicator for genetic cancer.
You would need to be fully counselled by your genetic team as even though the chance of a positive result is low it is a possibility… The trial is commonly called brca 3 but it’s full name is the genetics of familial breast cancer study and its aim is to try and identify new genes which may be the cause of your cancer, however in the process they have to rule out anybody with brca1 or 2 from the study so they test you for it… However the process if very long and it can even take up to a year to hear back from them.
After your counselling all that is involved is a blood test and your genetic team will arrange an appointment when the results come back to discuss it with you.
Your onc and surgical team may not be keen to refer you to genetics but if it’s something your keen to do you need to go through genetics in order to take part… Maybe you can print the details or give them the link if they are dragging their feet.
Hope you find this of interest…
http://www.icr.ac.uk/research/team\_leaders/Rahman\_Nazneen/Rahman\_Nazneen\_RS/Genetics\_of\_Familial\_Breast\_Cancer\_Study/18651.shtml
Lulu (btw I’m getting better all the time!) xxx
Hi again Lulu, thanks so much for all the info re the trial,i have printed it all off to take with me tomorrow when i go for my path results, so will def have a chat with my breast surgeon about it and see what they have to say , i shall also take the info with me when i go to see my onc soon for my tratment plan , they are both very good and always spend ages with me discussing anything and everything that i want to discuus so i dont envisage too many problems with them objecting , though we shall see. It is certainly something i would like to consider going for as i said, and as i have a daughter who is now worried sick that she is gonna get BC at some point no matter how hard i try to reasure her, it could put her mind at rest a bit, or if not at least give her the oppertunity to be tested aswell and consider possible preventable/risk reducing treatments , its all very very scarey stuff isnt it, BUT if i did have a gene mutation its better to be forwarned and forarmed i think ,for me anyway, id want to know.
Am realy pleased to hear that you are doing well Lulu and getting better all the time, thats brilliant news, take good care of you ,and thanks again for all the info.
Linda xx
Hi Linda - saw your results on another thread, you are amazing being so positive but I supose the news could have been worse (boy how our parameters change once diagnosed!) - can I ask what LVI means please?
Take care
x
Hi Sascha,
LVI means Lpmphovascular Invasion, my nodes were clear but i have LVI, i found this on another site which explains it more
"Lymphovascular Invasion
Breast cancers have a blood supply like normal tissue and organs. Tumors also
have lymphatic channels running through them, which serve as a circulatory
system in the body for tissue fluid and proteins separate from the blood
circulation. If cancer cells under the microscope appear to invade into the
blood vessels or lymphatic channels of the tumor, the possibility that cancer
cells have spread to the lymph nodes or other areas in the body increases. This
is called lymphovascular invasion or LVI."
Its worried me a bit but my surgeon didnt seem to be that concerned (or didnt show it) he was happy because my nodes were clear, it does mean though chemo would be more likely though just “incase” any cells have escaped, i didnt have LVI the last time so dont know that much about it but oviously would be better not to have it. Am trying not to panic and just focus on the good bits lol.
Hope you are doing ok pet.
Linda x
I am new to this forum but sending love Linda as I too sadly have just had the recurrence news after almost 8.5 years - its SHIT!!! Good job we atre strong women isn’t it? Wishing you all the best with journey 2 xxxx
Hi i too have had a recurrance in the original site after 4 and a half years!!! waiting for results of pet scan and will be having a mastectomy sometime soon. It seems to take ages to have scans etc done . Stay srtong girls xx
Hi all, I was originally diagnoised at 36 in 2006, and then again a new primary in 2009 on my 41st birthday. Just wanted to say hang on in there. It is devastating to be told you have to go through all this s***e again, but I am now 3 years from my second primary diagnosis and fingers crossed doing ok xx
I made 5 years and 1 day! Originally diagnosedin 2007 aged 40 with Triple negative, grade 2, stage 2 invasive. Had lumpectomy, chemo and rads. Diagnosed via annual mammogram with grade 3, stage 2 invasive TN again. Had masectomy withimmediate DIEP flap (which failed) and now on second of seven chemo cycle. Brings it all back, but emotionally so far have found it easier to deal with, think there is always a small part of the brain that was expecting it to come Back. Physically its the same hell!