Dear Ladies, On 23rd November 2016 after my mastectomy and sentinal node biopsy I was diagnosed with a Grade 1 Stage 1 (1 cm) hormone positive invasive lobular ( not ductal) carcinoma .I had a breast MRI prior to surgery because there was a concern re multifocal disease and there were 2 other lumps there so I decided to go mastectomy instead of further biopsies - I figured all the lumps needed to come out anyway as I would have been super anxious. Regardless of all this "good news" and good prognostic features I still feel unsettled. The medical team ( including 2 medical oncologists) said there was no need to offer me chemo and while this was very good news I am also worried not to have it. I am just going to have tamoxifen and monitoring. I feel ok that I had the mastectomy but worry for the future. Any BC sisters with a similar story ? Most times I feel very grateful that it was caught this early but I have a recurring thought of its return. I would not wish this experience on anyone and pray that everyone if feeling ok with whichever path they are travelling with their diagnosis. At times I even feel like a warrior...go figure!

Hi Christinag, My story is very similar to yours. Tumor which was 2.7cm Stage 2 Grade 1 EO+, PR+, Her2-, with a benign lesion next to it in left breast. Had a skin and nipple sparing mastectomy with immediate reconstruction using silicone implant in June this year. No chemo or radiotherapy just Tamoxifen. I initially panicked because your told that the chemo or radiotherapy will clear up any random cells. My radiologist explained to me that because my cancer was Grade 1 it was the slowest growing of all and to have chemo or radiotherapy would actually be doing my body more damage. Because my cancer was hormone positive the hormones fed the cancer cells. The tamoxifen starves the cancer cells so they cannot grow. I can accept that explanation and know that I will be being monitored which gives me piece of mind. I feel incredibly lucky that it was Grade 1 and count my blessings that at this point in time I have dodged other treatments. Hopefully I will continue to be this lucky into the future and I refuse to worry about a recurrence that may never happen. In the meantime how brilliant to get on and enjoy every minute of my life and cherish it and cherish all who share it with me. Wishing you all the best. Xx Cath

Cath, thank you for responding so quickly. Yes our stories are very similar indeed and that's the best attitude to have ,that is, to refuse to worry. I wonder how many of us with breast cancer are blessed/lucky enough to have been detected so early as to not need chemo? You could get away with not telling anyone that you have had it coz you don't lose your hair. I went around and told so many people after the core biopsy. Lot of love in the room though when you share things like this which I feel very grateful for. Best to you too and "see you on the dance floor" xx Christina

Hi Christina i was diagnosed with grade 1 tubular carcinoma there were 2 tumours they got both out through an incision across nipple both were grade 1 stage 1 er+ Pr+ her2- no lymph node activity and clear margins I don't need chemo but will have radiation and tamoxifen for 5 yearsim glad I don't need chemo but am still worried about having radiation

Hi Christina,I had IDC so am different, but I just wanted to say that I had DCIS in 2011 ER+ and they treated me with radiation and tamoxifen 4yrs, unfortunately I had a recurrence inspite of it last year. My Oncologist said he generally recommends chemo when it is stage 3 depending on other factors. I was Stage 3 and because a recurrence had to have Chemo. NOW...My Mum had BC at 40 they did an immediate Mastectomy and no treatment AND it NEVER RETURNED :) 26yrs she was absolutely fine! So based on your diagnosis it does sound to be correct. I have to a have Mastectomy in the New Year as prevention, but opted only for a single. If it ever came in the other side, which they all said I am NOT higher risk, just the same as everyone else. I'd opt for Mastectomy only, no treatment :) Oh am on Arimidex now, but am hoping they come up with something better as side effects are difficult. So I think your Specialists are definitely onto things, just ask lots of questions. Youre in good hands! xx Melinda

Hi Christina, my story is very similar to Cath's. Routine mammogram in July, diagnosed with 1.3cm grade 1, stage 1 invasive ductal carcinoma. MRI confirmed no other cancers. I'm not big breasted so to make sure margins were clear I chose a nipple sparing mastectomy with immediate silicone implant. I could not believe I could be so fortunate to have clear nodes and not need any further treatment. I am also Er+ Pr+ her2- and am taking Arimidex for at least the next 5 years.But I too was uneasy and got another opinion from an oncologist despite my surgeon saying chemo wasn't needed. He confirmed this and explained that grade 1 cells are slow growing and have only just started deviating from 'normal' cells. Chemo only attacks fast dividing cells. Yes, without chemo it would be easy enough to hide what we have been through but I also told everyone, including a group email to all the Gold Coast staff in the bank I work for. Breast cancer came out of the blue for me so hopefully I gave a few ladies a nudge to get checked!Of course there will always be that little worry which never quite goes away, but I remind myself that while taking Arimidex my risk of getting cancer in the other breast is now less than the national average.Getting breast cancer is absolutely life changing with or without ongoing treatment. I count my blessings everyday that I got the result that I did, and can look forward to a healthy life with those I love. My heart goes out to those who need chemo and radiation and I am so glad that it wasn't necessary for you. Wishing you continued good health

Grade 1 Stage 1 ( 1 cm) hormone positive invasive lobular carcinoma

kookasdream
Member
9 years ago
HI Christinag, similar story here, low grad 1 cm, no lymph nodes involved . . I had a lumpectomy in February followed by radiation.I had 16 days radiation when others were having 25, and no chemo...and yes, it does makes you wonder but I have checked with surgeon, oncologist and radiation specialist and that's the recommendation. Am on tamoxofen which I am finding OK, though I do get a bit weepy if I get overtired. I thought all clear.
Worryingly I had my annual mammogram etc early and found an abnormality. OK, I thought, here we go again , and this time it will be chemo and mastectomy, but after surgery , (my surgeon said lets take it out and have a look, not stuff around with needle core biopsies etc ) and it was large scar tissue from the first surgery...Hooray!. so even if something happens down the track its not necessarily cancer.... and if it is, they will catch it early... so I keep all appointments, do the annual checks, and try to stay well. Worry is natural but don't let it rule your life and be strong. Good luck to you!
adean
Member
9 years ago
Im 4 years down the track same story. Still here. Xxx
Brenda5
Member
9 years ago
I possibly could have gotten away with just Tamoxifen treatment too except I had lymph node involvement so they threw the book at it with chemo. Didn't need radiation treatment though so that was a bonus. :)
christinag
Member
9 years ago

Pammy46 to you I would say good on you for being more patient than I and waiting for further tests and having such a clever surgeon. In hindsight If I had not been such a nervous wreck, loosing weight and not sleeping I probably would have preferred the path you are taking with the radiotherapy instead of mastectomy. It sounds like you are in excellent hands. Best to you and yours xx
christinag
Member
9 years ago
oh girls thank you for your stories and responses, this truly is a wonderful space, I've got to go to work now but i will go with a little spring in my step today xxx
primek
Member
9 years ago
We always want them to give us everything. But they know what is needed based on clinical trials and experience. Fabulous that yours was caught so early. It takes time but eventually you start to feel comfortable in believing the cancer is gone. Take care. Kath x
Hopes_and_Dream
Member
9 years ago
and a wonderful Christmas
Hopes_and_Dream
Member
9 years ago
Hi Christina, my story is very similar to Cath's. Routine mammogram in July, diagnosed with 1.3cm grade 1, stage 1 invasive ductal carcinoma. MRI confirmed no other cancers. I'm not big breasted so to make sure margins were clear I chose a nipple sparing mastectomy with immediate silicone implant. I could not believe I could be so fortunate to have clear nodes and not need any further treatment. I am also Er+ Pr+ her2- and am taking Arimidex for at least the next 5 years.
But I too was uneasy and got another opinion from an oncologist despite my surgeon saying chemo wasn't needed. He confirmed this and explained that grade 1 cells are slow growing and have only just started deviating from 'normal' cells. Chemo only attacks fast dividing cells.
Yes, without chemo it would be easy enough to hide what we have been through but I also told everyone, including a group email to all the Gold Coast staff in the bank I work for. Breast cancer came out of the blue for me so hopefully I gave a few ladies a nudge to get checked!
Of course there will always be that little worry which never quite goes away, but I remind myself that while taking Arimidex my risk of getting cancer in the other breast is now less than the national average.
Getting breast cancer is absolutely life changing with or without ongoing treatment. I count my blessings everyday that I got the result that I did, and can look forward to a healthy life with those I love. My heart goes out to those who need chemo and radiation and I am so glad that it wasn't necessary for you. Wishing you continued good health
melclarity
Member
9 years ago
Hi Christina,
I had IDC so am different, but I just wanted to say that I had DCIS in 2011 ER+ and they treated me with radiation and tamoxifen 4yrs, unfortunately I had a recurrence inspite of it last year. My Oncologist said he generally recommends chemo when it is stage 3 depending on other factors. I was Stage 3 and because a recurrence had to have Chemo. NOW...My Mum had BC at 40 they did an immediate Mastectomy and no treatment AND it NEVER RETURNED :) 26yrs she was absolutely fine! So based on your diagnosis it does sound to be correct. I have to a have Mastectomy in the New Year as prevention, but opted only for a single. If it ever came in the other side, which they all said I am NOT higher risk, just the same as everyone else. I'd opt for Mastectomy only, no treatment :) Oh am on Arimidex now, but am hoping they come up with something better as side effects are difficult. So I think your Specialists are definitely onto things, just ask lots of questions. Youre in good hands! xx Melinda
Pammy46
Member
9 years ago
Hi Christina
i was diagnosed with grade 1 tubular carcinoma there were 2 tumours they got both out through an incision across nipple both were grade 1 stage 1 er+ Pr+ her2- no lymph node activity and clear margins
I don't need chemo but will have radiation and tamoxifen for 5 years
im glad I don't need chemo but am still worried about having radiation