Hello. I am nearly new to posting. I was diagnosed in mid March with a 7mm grade one pure tubular breast cancer. I have had a WLE and SNB ( nodes thankfully were clear ). I have been told I will be having radiotherapy.Although my tumour was ER positive I have been told I am borderline for needing tamoxifan - to be discussed with oncologist - who I am seeing for the first time next Thursday.My lump was found following my first routine mammogram ( I am lucky to live in an area where they are screening some ladies from 47 and I was called at 48 - the lump was not palpable ). I would love to hear from anyone else with Tubular Breast cancer and share what treatments you have had and anything you have found out about this rare type of bc.
Hi walkabout
Here’s the link to BCC’s publication regarding tubular breast cancer, I hope you find it helpful.
www2.breastcancercare.org.uk/sites/default/files/bcc201_tubular_breast_cancer.pdf
and also the area of this website where this is discussed:
Take care,
Jo, Facilitator
Thanks Jo. I haven’t found anyone else yet who has been diagnosed with tubular bc - it would be nice to compare notes.
Hi again,
If you would like to give our helpline a call they may be able to put you in touch with someone on our telephone/email peer to peer support service who has a diagnosis of tubular bc. Calls are free, 0808 800 6000.
Take care,
Jo, Facilitator
hi Walkabout, I was tubular. Dto two and a half years ago, lumpectomy (WLE), re-ex because didnt get clear margins, radiotherapy (no chemo as was grade 1, stage 1). Am on tamoxifen as tubular tends to be very hormone positive. My BS said that thought there is no such thing as a “good” dx, tubular is about as good as it gets. Show growing, doesn’t tend to Spread. Just has two year mammo, clear, so still in land of NED (no evidence of disease). There are, have been, a few tubular ladies around, but largely I suspect we are getting on with life. Certainly I feel no different to pre-dx now, other than a dent from surgery which is currently being fixed by lipofill reconstruction.
If I can do anything to help just say x
Mary grace , thank you for replying . Do you mind me asking what size your lump was ? I have been told by my surgeon that I am borderline for needing Tamoxifen which has confused me because I had read that tubular bc is almost always er positive and mine is positive. From what I have read I think the borderline thing might be because of the size of my tumour ( 7mm) but am not sure. I know I can discuss this with the oncologist next week but I like to go prepared and with some sensible questions prepared otherwise my mind just goes blank !! The BCN said she thought it would be a cse of weighing up possible benefits of taking the tamoxifen against the side effects. How have you been on tamoxifen - from what I have read here some ladies seem to suffer very badly and some less so ? Thanks. x
Hi Walkabout, I was 8mm and was also borderline for tamoxifen.
That wasn’t because of my level of hormone sensitivity - I am e+ 8/8 and p+ 8/8 but because prognosis for tubular bc is already good. I didn’t have lymph involvement so am 97% never to get bc again. With tamoxifen that goes up to 98% likely not to get a recurrence, so only 1% extra benefit gained for 5 years of tamoxifen.
BS said he would “consider me not taking it” Onc said "take it, it is systemic and protection against contralateral (ie getting it in the other side) which has about a 10% rate in tubular bc cases.
We compromised that I would take it for a year and, if I had awful side effects, they would then revisit it, but at leastI would get some protection. I was also 48 at dx. Snap! I reckoned it would get me nearer to menopause, as I was pre-menopausal. Actually I had some hot flushes atfirst, which died off after a few months and otherwise no adverse effects and so would be happy to take it forever as extra protection (having not had chemo and in case there were any rogue cells anywhere).
Sorry if this is TMI, but at 2 years, I had endometrial thickening (womb lining) which they attributed to the tamoxifen and had to have gynae investigations. Was taken off tamoxifen while this happened and they told me if I couldn’t take it again, that would be me done with treatment. That actually felt very scary. I feel that by popping my little tamoxifen pills, Iam doing something to keep bc at bay. Was delighted when I got the all clear and was put back on tamoxifen.
If it helps you with your decision at all, they told me that I would have got most benefit in those first two years,so if I couldn’t take it after two years, or even one year, that would have been better than nothing as it stays in your system for a while.
Then when I got all clear, they had a debate and onc still advised I went back on it, so they must actually feel that there is benefit. Onc said that tubular bc can be treated “curatively” and he advised treating with every weapon at our disposal, as he sees too many bc women with recurrence which he can’t then cure and said “in the nicest possible way, I don’t EVER want to see you again, and this is the best chance that I won’t have to.”
We all make our own choices, but it has had none of the nasty effects people talk about on libido or sex life, or aches anything thing for me, and I would happily take it forever if they let me xx
I was diagnosed at 43 with 7mm tubular breast cancer. Had WLE and level two node clearance, none positive. Now 4 years from diagnosis and 1 year left of tamoxifen. There was no choice given to me about the tamoxifen I was just told to take it. After a change of onc a year ago he said I could come off it early if I wanted if side effects were bad. They aren’t too bad so I intend to take it for the full five years which my GP also advises.
Best wishes
Mary grace and LooLoo - thank you very much for sharing your stories. The fact that you are both taking the tamoxifen makes me think more along the lines of starting on it unless the onc next week says firmly that he does not think I need it. I did not get given my er score only told it was er +. I asked about whether it was prog receptive but they told me they did not know because at my hospital they don’t test for it if you are er + . I would have been interested to know because I had been on the prog only pill upto diagnosis and had wondered if that had helped the tumour along - but won’t know and as others have said on here you will probably never know why so not worth wasting enery in that direction. One thing from Mary grace 's post that was also very relevant to me was the info about the gynae issues. A couple of years ago I had some investigations and some atypical hyperplasia in the womb lining was found which thankfully self righted and needed no treatment.I have mentioned it to my BCN but will definately make sure the onc is made aware of it next week - guess it is something that maybe will need to be monitered ??? Thanks again
Sorry I also meant to ask Mary grace about the 10% risk of it occurring in the contralateral breast.I read something about a risk of this in my google mad research but only found I think one reference to it. Do you know if the risk of occurrence in the contralateral breast is peculiar to TC and does the 10 % mean 1 in every 10 women with TC will get an occurrence in the contralateral breast ( sorry if that is a stupid question - I get confused about whether it is %s of %s ).
Hi Walkabout, I have definitely seen 10% mentioned which is 1 in 10 but I was just told that it is possible to get it, not how likely.
I guess anyone could get contralateral though I have seen it mentioned specifically about tubular and onc did mention it to me. I only had WLE and rads, so one of my reasons for taking tamoxifen was that, if I didn’t, nothing was stopping something from developing in the other side, whereas if I was taking tamoxifen, hopefully it would. Onc said tamoxifen is as powerful a weapon as chemo and shouldn’t be underestimated.
On hyperplasia, I know a couple of people who have hard some form of thickening checked 18 months to 2 years exit with tamoxifen and another friend who was taken off tamoxifen because of another medical condition which meant it wasn’t suitable for her. I would mention it in case tI tips thE balance in whether you should take it.
the balance was in favour of me taking it, then when they were checking the thickening they said that, for the amount of benefit I was getting, the balance he tipped the other way and the risks outweighed the benefits, and now the opposite again, so they can change their opinion for everyone’s individual circumstances Xx
Mary grace - thanks for the further information - really helpful. I feel better prepared for my meeting next Thursday. it will be interesting to see what the oncologist says to me. x
Hi Walkabout, I also had a .7mm pure tubular, found and removed in a biopsy six months ago. I am 59. Here we use the National Cancer Care guidelines (http://www.nccn.org/professionals/physician\_gls/f\_guidelines.asp but you log on as a doctor) and for pure tubular <1cm they don’t recommend any further treatments after that lovely radiation. At Johns Hopkins at Baltimore where I went for a second opinion they have a rare breast tumor oncologist - who told me pure tubulars have a normal life expectancy and agreed with guidelines that no further treatments are beneficial after radiation (had a clear sentinal lymph node biopsy like you). She said " if you had to have cancer you got the best one". which I found weirdly comforting. I hope you are doing well.
Hi WatusiLucy - thank you for your post - good to hear from you. My oncologist said it was my choice as to whether to take the tamoxifen ( his view was it increased my odds by 0.5 % ) . I have decided to give it a go and see how I feel on it and take it from there - mainly because I worry about a second new primary - if my body has done it once why not again - but I have no idea if that makes any medical sense. I am into week 5 and so far the worst thing for me is that it does seem to slightly upset my stomach.I am getting some hot flushes but they are fairly minor and I think I get less now than I did in week 1. That being said if your oncologist is right - I would prefer not to take the tablets if they are really not going to give me extra benefit. I will discuss it again when I next see my oncologist. Did your rare tumour specialist have anything else to say about tubular breast cancers ? Hope you are doing well post treatment.
I was diagnosed with tubular cancer in Aug 15. First mammagram at 50. Had op on sept 7th. Removed 5mm cancer. Only now beginning to feel better. I had a smell coming from my under arm even after I had just washed. GP said it was an infection. There was nothing that I cud see. 8 days tablets they are helping. I didn’t know how you were meant to feel and I have a high pain threshold. Ct scan on Tuesday and rads to start 15th October x