hi would love to chat with anybody with grade and stage 1 bc. feel free to join in. i was dx in oct 2009. had the lump removed with no nodes involved and clear margin. premenopause age 40 and on zoladex and tamoxifen. cheers gaynor
Hi Gaynor, I was grade 1, stage 1 tubular bc, no nodes. Dx Jan 2011, lumpectomy and re-ex to get clear margins. 7/20 rads done and taking tamoxifen. I’m 47 x
hi marygrace, are you on any other treatment now. or has it all finished for you x
Hi, Once rads finished it is just tamoxifen for five years. Tubular is a bit of an unusual type of IDC which is hormone positive and not that likely to spread so they didn’t suggest anything else. I notice you are taking Zoladex as well?
Hello Slightly different story - Dx Jan 2010, grade 1 , tubular, had Letrozole for 4 months to shrink to minimise surgery necessary, WLE with SNB, original dx confirmed, clear margins, but with 2 out of 6 nodes positive so needed chemo (which they had been hopeful would be avoided) as well as rads and 5 years of Letrozole. Although there was something in the nodes I was not advised to have a full clearance. All things considered, it was thought the chemo and rads would deal would anything in other nodes. and they also said 'cos I am small (stature not boobs, well yes small boobs too !) I might not even have any more nodes !! they had taken out the sentinel ones and then the next level , 4 of them. those 4 were clear. I’m well past menopause and tumour was very ER postive so thats why I’m on Letrozole. I was worried about not having the full clearance at the time, but it seems to be the latest thinking if other factors lean towards that. At least it has lessened risk of lympho. Hope you all have minimal SE of ongoing drugs. lowering the oestrogen seems to be causing SE as time goes on - itchy skin, stiffness of joints, dry eyes. But these are minor niggles in the scheme of things.
my first BC was grade 1 stage 1… 1.3cm, no nodes and ER positive… i was 37 at Dx and had wle and re-excision for unclear margins followed by 25 rads and tamox.
Lulu x
Hi Kirsty, never met another tubular person on here before. Mine was only 8mm as it turned out but they said as its slow growing it could have been there for up to a couple of years, Scary thought. I didn’t have a lump, went there to get a cyst checked out and my bc was found by a very observant ultrasound guy who I owe a lot! I’m pre-menopausal hence the tamoxifen as mine was also e+8 p+8
Marygrace if it’s tubular it’s more like to have been there way longer than a couple of years. A grade 1 IDC is likely to have been there 2 or 3 yrs. We recently had a lady in clinic with a very tubular gd 1 cancer and the pathologist was debating whether removing it was the best option. As his comments in responseto the radiologist say he wondered what it would be like in 3 yrs at the next screening he said it wouldn’t be much different in 30 years. So yours could have been there a considerably long time. 5-8 years is not unlikely time scale for any grade 1 cancer to develop. But like Kirsty although the tumour may not change much the longer it is there the more opportunities it has to move to the nodes but it’s very unusual to have nodal involvement in a purely tubular bc. But some are IDC with tubular elements.
I also have a friend who posts on here who had tubular cancer but hers was a grade 2 I think.
Tubular is uncommon but it’s probably the next most common after lobular.
Lxx
hi lulu34.my bc measured 1.3 sn was clear and clear margins. i had 15 lots of rads and was age 40 at the time premenopause. iam on tamaxifen and zoladex and not had a period for 12 months. going through early menopause is not very nice with the hot flushes etc, but would rather have these than bc anyday xxx gaynor
Thanks Lulu, thats really interesting.
I’ve never known much about it despite my googling/researching and asking questions except that it was seen as relatively good news.
It was pure tubular but with some DCIS which took a re-excision to clear. No nodes or vascular involvement. Surgeon insists that I’m in the “excellent prognosis” group in some study or other (Nottingham?) and that 97% chance of it not coming back after surgery/rads, 98% with tamoxifen.
Onc wants to treat aggressively because of risk of contralateral so 20 rads (15+5boosts) an tamoxifen for “at least” five years - referred to some study which has people taking it for longer . Would have done chemo if anyone had even suggested but never any discussion. Suggested mx (my mother got bc at 41 and died of secondaries) but general agreement that WLE+rads would be equivalent. Still worries me.
I’ve seen you posting on other threads and you sound really clued up. I’ve always wondered about the genetic link. I have had no other female relatives with bc or ovarian on either side but both my mother and I. Surgeon told me a few years back that, as my mother died in 1990 and they didn’t used to do blood tests, that there is nothing to compare me with. Onc threw in last time I saw him (little ray of sunshine that he is), that he wouldn’t rule out a genetic link, even though two surgeons said they thought it very UNlikely.
Do you know even if you can be tested if the only other person with bc in the family is no longer around and whether I would even qualify to be tested? I have sons not daughters but would still consider the possibility if I could be tested… I’m not obsessed by it, but I’m a researcher and believer that knowledge is power x
PS: They made some comment about me being “quite young” to have tubular and that it was mainly an older woman’s cancer. I was 47 and pre-menopausal but no idea whether there is any real substance to the comment. I’ve seen webboards with 40 and 50 somethings with tubular.
Also some scary US comments where people are taking very little treatment for tubular! (I wanted it gone yesterday and zapped with everything for all the reasons Lulu says) x
Hi gaynor and all, can I join in pls, dx Sept 2010, WLE and SNB Oct, grade 2 but I’m assuming stage 1 as no node involvement. rads Nov also started tamoxifen at same time.@ 36 I was told to expect the ‘works’, so I built myself up for chemo, but onc said no need, but I sometimes worry, as others on the forum say the only reason they had chemo was because of their age.
I don’t know too much about my bc (head firmly in sand) other than grade and that it was invasive, anyway doesn’t matter as its gone now.
I’m currently awaiting referral to lymphodema clinic, as my affected boob is really swollen and uncomfortable.
It’s good to talk to others in a similar position, as so many of us ‘just’ girlies,(you know ‘just’ rads ‘just’ tamoxifen ), leave the forum, as they feel they can’t complain about their worries when so many others are having a tough time on chemo.
Take care all x
Ps - mg I was told not to look at any US sites, cos they treat bc very differently there.
Hiya can I join in please ?
I’m 54 years old, 55 this momth and I was diagnosed on March 17th, had Letrozole for a month then WLE and SNB on April 18th. It was 2 cm, grade 1, stage 1, no nodes involvement. They wanted to change my tablets to Tamoxifen but as I’ve had DVT I am staying on Letrozole for 5 years, and they’ve said I am having radiotherapy, am awaiting my appointment with the Oncologist and will know how many etc then. They’ve said it hopefully won’t be till after mid June as we are getting married on 18th June.
What worries me is now that I’ve had BC what is the chances of it recurring again ?
Hi Crazy cat lady, Isn’t it funny how we say “just” about things that aren’t “just” at all because we feel that we are relatively well off compared to some others. Stage isn’t whether in nodes, its how big it was (less than 2cm I think) but as you say the main thing is that we are a group of people who have followed a similar sort of treatment path and can support each other x
Hi Saphy, See you’ve escaped from the woods! Saw the other day that you have joined the grade 1, stage 1 clan… I am on tamoxifen (and needed a re-excision because I didn’t have clear margins) but otherwise on a similar treatment path to you.
If you asked your oncologist he would give you recurrance stats if you want them, not everyone does. I’m someone who wants to know the facts. I just try to tell myself that rads will zap anything locally and hormone treatment protect against it coming back x
Ah, I see, thanks MG, my BC was 12 mm, I never ask too much, not sure why ‘ignorance is bliss’ I suppose.
Hi saphy, yup I worry about 'it’coming back too, even though onc said I have a 96% chance that it won’t, at 36 with no family history, I’m sure I must have had a 99% chance of never getting BC in the first place. I think we just have to put our trust in the docs and drugs we are given that (fingers crossed) it won’t be back! Also yearly mammograms, to catch any little blighters early. X
hi all, in the same situation as u all(but maybe different type of bc) dx in march with idc.had snb,wle.thankfully clear margins and no nodes affected.tumour was 1.5cm(felt much larger 2 me!)grade 2.rads and tam 4 me also. i was told they initially would throw every treatment at me because of my age(41)so was stunned when they sai chemo not necessary.initially worried that my prognosis would be improved with chemo but was told that wasnt the case.feel very fortunate,if thats the correct word?just didnt want this vile disease in the 1st place. love alex xxx
hi crazycatlady. i was offered cemo with 3% benefit. when i turned it down my consultant said i had made the right chose. i too now think at times 3% is better then nothing and having it might of given me a better chance of it ever coming back. my mum was dx age 47 stage and grade one, had rads and tamoxifen. 9 years later it returned in the other bust. she had cemo second time round. xxx gaynor
Hi all
I was dx Feb as a tubular, grade 1, slow growing, stge1, 8mm. Doc sd prob taken 3yrs 2get that far. Hahad WLE, SNB &had my 1st rad last thurs. 17 more 2go! Been on tamoxifen 1mth. Just turned 50. What a nice birthday surprise & 1st mammo. But I do consider myself lucky, not having chemo+ they fd it.
Alis
Hi Alis, that sounds so similar. I am also tubular 8mm, grade 1 and stage 1 and had had this about 3 years. WLE< SNB and 7 rads into 20 and 6 weeks into tamoxifen. I’m 47 x