Tubular bells (I mean cells!)

Does anyone know anything about tubular cancer? Looby x

Hi loobytuesday - I’m new to all this BC business but have looked on net - apparently very rare 1 per cent. It’s called tubular cause of the shape of cells. Apparently a good (if there is one) to have, doesn’t usually involve lymph nodes and unlikely recurrence. Hope this is a bit of help.

Tracey xxxxxxx

Hi Lobby,

Gosh you do mirror me!!

I’ve had a tubular bc removed in May 7mm. I’ve looked up loads of research, in nhs profession and daughter a medical student. It’s quite rare and very treatable. They used not to treat it but found some women died from secondaries so they had to treat it. This was because they said that it was very slow growing. I had my first mammo year last Jan and it wasn’t seen then and pick up this April, so I don’t call that slow!

Bcn and breast surgeon said it was the best one to have if you are going to have bc. Quite frankly I’d rather not it at all!! Onc has been very kind and not reflected any opinion.
Still to have all the follow ups as the breast surgeon said to me that once you have had bc, you are more prone to have another! Oh joy! So I’m having all the treatment offered. He also said that recurrance of same type of tumour was less than dying suddenly - I think he was trying to reassure me but reading this he sounded as though he was full of gloom and doom. I don’t really want to have or do either.

I hope that this is helpful.

Hi Jo

We are twins! Mine was dx 18 June (first mammogram, one month after 50) and they said 7mm Removed 3rd July 12mm. Still small but I read that it is only good because tubular is usually dx when small and size for size it may be worse than ordinary ductal. Can’t understand all the scientific stuff and there doesn’t seem to be much about it in layman’s terms. I gather that it rarely travels out of the breast. Did you feel a lump or have a routine mammogram?

I asked my cons who was very dismissive and told me just to go away and get on with life! I don’t intend to dwell on it but I do want to find out more so I can make more informed decisions. He told me to take Arimidex whereas my onc told me that it may not be worth it in relation to the side effects. I know it’s a decision many people would love to have but I still worry. Only 0.5% are diagnosed from first mammo (less with subsequent ones) and I was unlucky. Onc told me after rads my chance of recurrence is 3% and Arimidex will bring it down to only 2% - what if I was unlucky again.

Also, I gather I have LCIS in tissue too which may not develop but … Another thing that worries me is that they treat the breast in question with surgery and rads - but no checks at all (other than first mammo) made on other one. LCIS did not show up on mammo so it might also be in other breast. I know they don’t treat it but surely Arimidex would help prevent another cancer, rather than a recurrence. Apparently my ER+ was maximum 8/8 - you cannot get more hormone positive than that. At the mo I have said I will start Arimidex and review it after 3 months. Really don’t want to have drugs if they give bad side-effects but I don’t want to compromise chances either.

My sister also has bc - she is not sure of her type but was v aggressive - first noticed in lymph - and growing like a monster so chemo before surgery. Prognosis was poor but she is still ok 8 yrs on. She was 48 when dx so was not lucky (to have mammogram dx) like me. No other previous family history but looking into it for our daughters.

What do you get in the way of follow-ups? I haven’t got as far asking that yet. I know there are annual checks, but are there more in the first year - after rads? My wound has only just stopped oozing and I’m a bit worried that it is still leaking inside cos breast very hard and lumpy. They said they might not be able to do rads until it had settled down. Is it normal to be hard - also still visible bruising (3+ weeks from op).

Sorry to be such a worrier - would love to hear if anyone has had similar issues. I feel a bit bad too that my worries are so minor compared to the many lovely people on here who have not been as lucky as me. Wishing everyone the very best. Wear purple!

Looby x

Hi Lobby,

We can go to private chat if you like and compare info and phone no’s if you want to?!