New primary diagnosis (I think?)

Hi I’ve been looking at the forums for nearly 4 years but never posted… You all seem so brave and informed so I was scared LOL. Quickly (or not so quickly cos i do go on!) Aug 2006 (age 36) On left breast I had grade 3, 10cm Invasive ductal carcinoma (triple negative - no lymph nodes involved). Had mastectomy, chemo, radio. Recon in 2008. Jan 2010 I felt a ‘bit lumpy’ on other breast, went for ultrasound where they said it was fibrosystic changes. Lump got bigger but when I went for yearly oncologist appt he felt lump and I told him it was fibrocystic changes so he said oh yeah thats fine! Anyway, decided lump was getting bigger so have just had it confirmed that I have again Grade 3 IDC. Tumour this time is only 16mm but lymph nodes are involved. Having CT scan Friday. Had bone scan yesterday which is clear :slight_smile: They told me my oestrogen is weakly positive (3 out of 8) don’t know Her-2 status yet. This is all new to me as I am triple negative so not sure if this is recurrence or new cancer?? Has anyone had a similar experience or some words of wisdom on negative / positive / hormone involvement cos I am so confused :frowning: Thanks

neesey sorry to hear you have another cancer.

your story is fairly similar to mine in that i was diagnosed in 2006 at age 37 and got a new primary diagnosed last year at age 40 in other breast.

with regards to your tumour being ER poor… some consultants will refer to oestrogen receptor poor tumours as triple negative and may not give tamoxifen because of this.

a true negative tumour is 0/8 but a 2 or 3 is sometimes incorrectly referred to as triple negative when it is actually oestrogen poor and may in actual fact have some benefit from tamoxifen… your consultant may have called your original tumour triple neg even though it may have the same ER level as the more recent one.

but some times you can get a completely new primary… mine were both very different.

when you actually have the tumour removed and looked at by the pathologist the pathology may change.

i dont think the management will change whether its a primary or a recurrence… if its grade 3 and has some node involvement then its likely you would benefit from chemo regardless of ER status.

good luck with your scans.

Lulu xx

Hi Lulu. I was looking at your profile before I posted and it did seem very similar… was actually going to send you a message so glad you replied :slight_smile: You have cleared up a lot for me already. Feel like I’m calling my breast care nurse every five minutes and feel like a pain already! I know I need to stop thinking too deep into things but I’m sure you know that so many things go on in your head and its sooo hard to stop them. I can’t do anything until I have my results so all I can do is wait. Bone scan result today has really lifted me… I was imagining all sorts… Think I’m a bit naive to all this. Thanks for your help. Will let you know how I get on with the scan. Neesey x

i was daignosed in march with grade 3 idc left breast, no node involvment, “weakly” er positive at 4 out of 8. My onc says people argue whether this is triple negative or not, but he is putting me on tamoxifen as he says i will get some benefit from it. I am having chemo, have done 3 fec, am about to have first of 3 tax.

Sorry you have to go through this again,

Vickie

Hi Vickie, there are so many people going through it again… its so sad! Thanks for your post. It’s making me doubt my original diagnosis of triple negative. I never got a copy of my pathology report. Do you know if this is something you can request? Its all so confusing!!
Denise x x

Hormone status can change, between diagnoses. My primary was er-, and surprisingly, when I was diagnosed with mets, I had become er+. However, it was only very weakly positive,so effectively it could be classed as a meaningless positive. We tried hormone therapies, which didn’t help, which further suggest that even a weak + is not hugely different from a negative. We checked and double checked, in case errors had been made-but each test was returned the same. Apparently, the change of hormone receptors is much more common that you would think, which is why it’s always worth having them rechecked on subsequent diagnoses.

Thanks Elaine for your information. Will try not to think too deeply into it anymore. Its just the waiting makes your head spin!!
Thanks again to all who posted. Denise

Hi Neesey
Like Lulu I had a new primary diagnosis in the same breast in July last year which was ER+ (1.4cm), my first one in June 2005 being triple neg 3cm. Although they did say that this one was weakly positive. Both were grade 3.
Lumpectomy first time round followed by chemo and rads but just mastectomy this time and Tamoxifen. Its horrendous having bc twice but to be honest I don’t feel so afraid of it anymore. On both occasions I had clear nodes but opted for axillary clearance at the time of the mastectomy just in case and for peace of mind in the future! As it turned out they were clear again which was good news I suppose.
I just think that the “bad” breast and nodes have all gone now and I’m even considering a reconstruction for next year.
Keep positive…sending you a big hug
Bev x

Hi Denise
I too have a new primary. It’s so unfair to have to go through it all again, my thoughts are with you. Once the treatment starts you will feel better. I am glad you have now posted, you will get plenty of support here, and every positive thought helps
Hugs, take care
Maria

Hi. Thanks for your kind words and hugs Bev and Maria :)I send big hugs back! Sorry you’ve had to go through it again but you both sound so positive second time round. I don’t think I’m as positive this time. I feel so alone this time … why… I don’t know. I’ve got great friends and family. So many things going thru my head. I had a CT scan yesterday and prob get results Thursday… its only been one day and it feels like I’ve been waiting forever already! My consultant said I will have a lumpectomy depending on my results of Ct scan. Now I’m thinking maybe I should have a mastectomy.Don’t know if they would do that if I asked? I’ve had tram flap recon already on left side but not sure how or if they would do recon on right side. They can’t do tram flap again so havent a clue what they would do.
Bev - definately go for recon . Big op but outcome great. Was supposed to go on Monday for 2nd tattoo but cancelled as so much going on.
Maria - Are you having treatment at the moment?
Big hugs to you x x
(This has taken me ages to type cos I’m so scared of saying the wrong things… I’m terrible for that! LOL)

Hi
I have an appointment with my breast cancer nurse tomorow to discuss a recon for next year! Quite excited about it now - had a terrible 2 weeks in Greece on holiday trying to cope with the prosthesis, felt very uncomfortable as it was so hot. Also unable to wear strappy tops etc. Won’t book another holiday now until its done!xx

hope it goes well, Bev, I had a TRAM flap after 2 years and it was the best thing I ever did - psychologically it was such a boost - can’t explain, but WELL worth the hassle
good luck
monica x

bev i agree with you there is something about having had it again that makes it less scary… im not scared of cancer any more and not afraid of dying for that matter if it were to spread or come back with more vengeance again.

just been for a 2nd look ultrasound and mammo today after something was picked up on breast mri and all they could see was normal tissue… but being a gene carrier i was prepared for anything.

has just made me more sure that having the bilat Mx and ovaries out later this year is the right thing to do.

hope the waiting is over for you soon

Lxxxx

Hi all. My scans were all clear!! I had my lumpectomy yesterday and home now. All went well. They removed all my lymph nodes and only did one cut so cosmetically should be ok. Get full pathology results in 3 weeks. Chemo will start after kids go back to school so I’m going to make the most of the holidays!!! I feel a lot better now. Thanks for your comments and kind words. Best wishes to all of you x x x

I’m really pleased for you neesey, I’ve been following your thread because I’m triple neg too. I’m like a sponge wanting to soak in as much info as poss!
Enjoy the six week holls with the kids!
Emma x

Hi Neesey

Sorry for the delay in posting but great news! You must be so relieved.
Wishing you well for the future

Bev xxx

Neesey / Daisyleaf

Just wanted to say I’m now on the waiting list for my lat dorsi reconstruction and the surgeon told me last week that it could be happening in just a couple of months! Weyhey…a new booby perhaps for Xmas! Thanks for your positive comments both xxx

great news Bev

Lx

Daisyleaf : Really pleased for you! Hope all goes well. Keep us updated if you can.
Bev thanks I am relieved.

Sorry haven’t been on here for ages, so just to keep you updated… Got my final results and they found grade 3 idc 1.8mm with one lymph node invloved and also 2.5mm of dcis which was very close to the chest wall so they didn’t get the margins they would have liked. I am therefore on my second session of myocet and cyclophosphomide (today)one more to go then have to have 4 sessions of taxotere. This to be followed by 3 weeks of radiotherapy and a 3 day boost. whoopeee …I didn’t have much to do for the next few months anyway !! :frowning: Have to have tamoxifen for 5 years as er was 3 out of 8. Sounds very similar to you Bev x x
Thanks for all your comments, I’m so glad I posted x x x

hiya neesey

mine was 1.9cm grade 3 no nodes but did have LVI. and also had DCIS extending to 2.5 cm and was in margin close to chest wall but didnt need any more surgery for this… they werent worried about it and said it was pretty rare for BC to spread into the muscle even though i didnt have clear margin… i was worried about it at first but jsut figured the chemo would blast it.

good luck with the rest of your treatment.

Lx