Hi,
My surgeon just phoned with my oath results following my WLE last week…and it seems pretty bad news
Invasive tumour was 1.5cm, strongly ER+ and HER2+. They removed 3 nodes during SNB, 2 of which were positive. The surgeon said he really struggled to find any nodes so is confident the rest will be clear but I just don’t believe him! The bad news is that whole of lump removed was DCIS (4cm in total) so I now need a mastectomy and full mode clearance. I will get immediate reconstruction.
Im only 30 with two kids under 5 So this sucks!!
Anyone had similar results and can give me some hope, because I am seriously lacking some at the moment.
Hi Kerry
I too have had masectomy and full node removal. I have a daughter whose 5 and was worried how she’d cope. I got a book from the Breast Care Nurse called ‘Mummys Lump’. Its illustrated and written for young kids in mind and I found it good to read through with her. I felt numb initially, then really pissed off when I was diagnosed. However I went along to a support centre in my area and met a lot of woman, some diagnosed and treated 20 years ago and still here. Its a very survivable cancer if you know what I mean. Its good you can get reconstruction it was not an option for me at this time. Hugs to you. xx
Hi Kerry
You are obviously in shock and terrified its so hard for younger women with young children to worry over, I was dx with grade 3 ILC in feb I had a 3cm tumour with 3/20 nodes affected , I had a WLE full node removal followed by chemo and rads which I have just finished I am now on the delightful Tamoxifen , its seriously scary stuff when you are first dx but once you have a treatment plan in place it gives you something to focus on , please continue to come on here for support its invaluable it really is the ladies on here are the only true people who know what your going through and you can rant as much as you want withiut offending anyone, Try not to focus too much on the path results rather than the treatment its too much to take in and handle so early on ,
Good luck hun
I finished my radiotherapy yesterday. Was diagnosed in January this year, ER+++ PR+++ and HER2+++. Had 6 x FEC-T then mastectomy with immediate LD flap reconstruction, 25 sessions of rads and now Herceptin for a year, tamoxifen for 5 years. Its all doable and the worst bit is definitely the diagnosis. Once you get into your treatment you just get swept along.
My reconstruction is very good - I go back into hospital in November for nipple construction and uplift on other breast.
When I was first diagnosed I said to my OH - “so long as I don’t lose my boob or my hair” - lost both but I’m still here. I’m 45 with 14 and 12 year old daughters. I have been completely open with them from day one.
Wishing you the best of luck and please feel free to PM me if you have any questions.
I’m really sorry the news wasn’t what you were hoping. Your results are very similar to what mine were. I had a 4.3cm invasive tumour with some DCIS, two nodes with cancer, ER+ 7/8 and HER2+. I was 32 when diagnosed, but I don’t have any kids. Although the news could be better, my oncologist seemed confident that they could cure me of cancer and that prognosis is very good, and hopefully the same applies to you. I had mastectomy, chemo, rads, and am now on herceptin and tamoxifen. It has been a long road, but it really is manageable and I look back now and can’t believe what I have come through. Although I only recently finished rads I am feeling better all the time, and at the moment have no signs of cancer. Also, my sister had a very similar diagnosis four years ago and she is doing really well, so don’t give up hope. x
Hi Kerry
I was diagnosed in January. 19mm grade 2 tumour strongly ER+ and PR+ HER2-. Had WLE (lumpectomy) and full node clearance, 6 x FEC chemo and 20 rads, now on Tamoxifen, I have a 5 year old daughter. I know it’s a very scary time for you, just about the worst point, but as Janice says it will get better once you have your treatment plan. Take care and any question please feel free to PM me.
Lydia x
i was diagnosed in january. Lobular grade 3 multifocal- largest invasive area 3.1cm. No lump. Just pain. No cancer showed on mammo and not much showed on ultrasound either. as my cancer was lobular i needed and MRI on both breasr. Was told from outset didn;t look like nodes involved.
had mx on right breast and when i got the results and tols it had affected 1/3 sentinal nodes as was much bigger than even imaged in MRI i was absolutely devastated. Totally terrified and numb with disbelief. I completed my chemo and rads and now on tamoxifen. it does get much easier. The only thing I’d say is that youc become paranoid about aches and pains.
I had to have and MRI of lumbar spine and sacral becuase of pain in back and foot numbness. I had to get results of the mri yesterday. heart raced in waiting room and felt dizzy and physically sick. was told the mri disclosed problem with two discs which has manaled tissue and is pressing on nerves hence pain and numbness, but no cancer ( referral now to back doctor!) I am still drained today after that. At least I know that i wasn’t imagining pain /numbness etc becuase you do become paranoid. i knew i had to get these scans done and had to face the fear square on. I am still waiting on pelvic scan results but doc says it is highly unlikely they will find anything. I’m not saying this to make you feel worse, the contrary. I am the most anxious highly strung bod you will ever meet. If i can get through this you can . Wishing you the very best x x
Hi! New to the site! Also had more discouraging news than expected yesterday. Diagnosed with ILC in August, mastectomy 10th Sept, but tunred out to be larger and higher grade than anticipated, plus 1 out of 4 Sentinel Nodes affected. Plan is to start chemo v soon - see oncologist on Tuesday - followed by anxilliary clearance after that. Was much more scary to get results than I anticipated, and threw me into a low, but rallying now. SO encouraging to read the posts on here, so glad there is such a community.
Thinking of you too Kerry.
Sue xx
In addition to the support and shared experiences here our helpliners are on hand with a listening ear and further information, lines are open 9-5 weekdays and 10-2 Saturdays on 0808 800 6000
I am posting a couple links to our newly diagnosed and younger women information which I hope you will find useful:
Hi Kerry
I am sorry you have had such news but hope to give you some encouragement. I was older than you at dx (48) wigh kids 11 and 15 but had similar path results.
3.5cm lump and extensive high grade DCIS had max and full clearance 2 positive nodes ER+ HER not tested, positive posterior margin , nodule of cancer in skin and vascular invasion.
I had 6 FEC and then Rads followed by 2.5 yrs Tamoxifen and 2.5 yrs arimidex
The reason i am posting is that it will be 8yrs next month for me and despite a dx of Lymphoedema in 2006 I am doing ok.
I wish you the best of luck with the treatment
Thank you do much for all yoursupportive replies - it helps so much to read similar stories.
Ive had a terrible night with very little sleep. I’ve had pain in my back for a while so now I’m so worried it has spread already. I phoned the helpline yesterday and they were great but allthey can do is reassure you; they don’t actually know. I’m so scared of not seeing my kids reach school age. Taken some Valium but it’s not doing much!
Hi Kerry
sorry your feeling so down and unable to sleep - we all know how you feel Hun - things do get easier - I was 34 when I got told I had breast cancer my girls was 4 and 8 - I was so scared about my kids ie- not seeing them finish school or being there for there wedding
i will be 3 yrs out in jan and I had IDC 2.5cm tumor - 3 nodes affected and vessel invasion
chemo rads tamoxifen
overies out now on arimidex
stay strong Hun - you will be here to see your children start school and finish school
alison xxxx
hi all
6 weeks ago(19th aug) i found a lump in my breast n under my arm went straight to docs who made me an urgent referal saw consultant on 30th aug where i had mamo ultrasound n biops taken b4 i left consultant said it was bad news as it looked verry much like cancer i then had the longest n worse 4 weeks of my life waitin 4 results finally got the dreaded bad news 26th sep got to have mastectomy n looks like ill need radio n chemo dont think its really sunk in yet as (like everyone said) the waitin really was worse than the diagnosis n y is the thought i could lose my hair the worse part about all this havnt really given much thought about the fact im gonna lose a boob dont think im lettin myself think about it i have been told i might b able to have immediate recon but they dont no if its in my lymph nodes yet as sample taken was showing signs but they didnt no if sample was part of the lump or the nodes as sample was too small dos this make sense to anyone thanks 4 listening x
sue x
Dear Kerry1981 - I guess 1981 is your year of birth? In which case you are just 2 years younger than my darling daughter. I am going to talk to you as if I was talking to my daughter. Please try not to worry. The strong ER and HER2 results are GOOD - it means there is more amunition to fight it with. You will feel better when you know what the plan is. If one of your nodes has tested positive then you may have to have chemotherapy - but don’t panic! It’s not as bad as you see in the movies!
I will be here for you if you need me. Stay strong - you will be given the tools you need when the time comes.
Hi Kerry,
I am a little older than you (37) was diagnosed at 36. I had a grade 2 invasive ductal carcinoma. Its HER2 positive and ER and PR positive.
I had chemo first as they wanted to shrink the lump before i had surgery. The chemo i was given was FEC-T. (3 lots of FEC and 3 lots of T). I have then gone on to have a mastectomy - i had mine 3 weeks ago.
I get my pathology results today…so fingers crossed…
What i am trying to say, is yes… treatment can be tough…but we do come out the other side. I continued to work all the way through my treatment as it helped me focus.
I am due my 5th Herceptin on Wednesday…i drive myself to and from appointments so Herceptin isnt too bad for me. And as my consultant says…HER2 used to be a more aggressive form of cancer. But Herceptin turns it from a lion in to a pussycat. That in itself was reassuring to me.
You will feel more in control once you know what the plan of action is for you. The waiting and the fear of the unknown is worse at times…
ASk as many questions as you like on here. There will be plenty of ladies to support you. I am more than happy to answer any questions you may have. If i can help i will. Even if its just to share my experiences.
Rae
x
Hiya,
I only just saw this mail today, i think the boards are playing up again.
Well i did get my pathology results and all is pretty much ok. The chemo did its job and apparently i have an excellent response. The cancer had spread to 9/22 lymph nodes so i will defintely need radiotherapy. (its not started yet). But as far as the tumour in my boob was concerned, it had shrunk a lot prior to surgery (it was less than 5% of its original size).
He did talk to me about survival. My 5 year survival he said was all being well 100% and my 10 yr survival is between 82 and 90 %. Obviously these are not absolutes and i know its not definites but they are a guide. He also supported the fact i can come off hormone therapy after 2 years so i can try for a baby. (i am being put on Zoladex and Letrazole as my hormone therapy).
All in all i am ok with the outcome - i have my proper prosthesis now and i am just trying to get on with things now :-). I am still having my Herceptin too, but the side effects are nowhere near anything like i had on chemo.
I hope all on the thread are keeping well,
Rae
x
Kerry - I’m at a similar stage of treatment to you so no stories to tell but just wanted to say I hope you are feeling a bit better having had time to digest your news. I suppose the thing you have to think is - at least you know what you are dealing with and they can give you the right treatment. I’m certain there are plenty of ladies walking around with bc who don’t even know it. I’m not saying any of us are lucky - but at least we have all these treatment options available to us.
Rae - so happy that your appointment went well - especially the bit about coming of the hormone treatment to try for a baby. That is fantastic news that your oncologist supports what you want to do
