How did you decide how to manage DCIS after surgery?

Nolton9

Hello,

First post, but have been reading lots on here for several months - so helpful.

I am 43 with 4 children and I have recently had a MX for extensive DCIS, intermediate grade. I had an immediate diep reconstruction and am going through the final stages of this over the next couple of months. 

My final report showed that whilst the area of DCIS was smaller than the mammo initially showed at 5cm rather than 8cm but that it was mixed with an area of classic and pleomorphic LCIS. Within that area were 2 areas of invasive carcinoma (ILC) both 1mm. Strongly ER and PR positive . Sentinel lymph node biopsy showed 3 nodes were all clear. No vascular invasion. 

The oncologist has recommended 'a trial' of hormone therapy. (I cannot take tamoxifen as I  had a uterine haemorrhage and needed blood transfusions a while  back whilst on another hormone therapy for fibroids. Zoladex has been suggested instead).

Whilst I understand that hormone therapy plays a very well-proven role in reducing the risk of contralateral and recurrence problems. I am completely terrified of a replay of the issues I had previously with hormone therapy and also equally worried about what seems like a long and debilitating list of SE of Zoladex. I am also not completely clear what my risk actually is of a new BC event - as generally it is referred to as "a very low risk" and that taking Zoladex would again half that small risk. Does anyone have the numbers for this risk?

I have tried a couple of discussions with the BC nurses at my hospital but the outcome of those is that they seem to feel I'm not so good at making decisions!! Which I find patronising and easy to say when its not you! So I wondered if anyone here with experience of a similar decision could give me some tips/thoughts on how you decided whether to take the hormone therapy or make your peace with an already very good prognosis...  I have a young, active family and feel we have already been on hold whilst I get over the reconstruction is Zoladex just going to be another 5 years of that?

Many thanks,

Annette47

Can't give you exact numbers, but your risk is primarily going to be of a new primary to the opposite breast.   I've seen numbers both that a diagnosis of bc raises your risk .5-1% a year (what my onco told me), or that your risk is approximately 1.5-2 times that of someone with no history (seen that mentioned here).   I'm not an expert, but if I recall right, ILC carries with it a higher risk of being bilateral (both breasts) than IDC, but since yours were micro-invasions I don't know if that makes a difference.

What type of hormonal therapy were you on for fibroids?  I ask because most types of hormonal therapy try to supplement estrogen and/or progesterone while the types given for breast cancer try to block estrogen (so they are more properly known as anti-hormonal therapy) so they are not at all equivalent in terms of their effects.  

I did choose to do a trial of Tamoxifen, but I was strongly ER/PR+, had a lumpectomy (so more remaining breast tissue to protect) and had no particular risk factors that would make it particularly dangerous (i.e. risk of clots or uterine cancer).   My oncologist laid out the numbers (both the risk of a new primary and the risk of recurrence) and said it was up to me.   Knowing that most of the "quality of life side effects" would go away if I stopped the drug (as I said the more serious ones were not a particular concern in my case), I decided to try it and have tolerated it quite well and have been on it for 15 months so far.  

redsox

Nolton9--

Have you discussed this with your gynecologist? That seems like a voice you need to help you make a decision.

percy4

I decided against hormonal therapy because my recurrence risk is low, and, as you say, it would only be halving an already low risk.  I've had horrible hot flashes for years all through perimenoupause and on, and also work on my feet and cannot have any joint pain (I would have been taking Arimidex, as I am just past menopause).  I was told I could try it and discontinue if the SEs were too much, and perhaps I should have, but I didn't want to feel crappy even for awhile, really.  I need ALL my best physical enegy these days.  My RO told me that studies have actually proven that ongoing exercise for life cuts recurrence by 30%, so that's good enough for me, and that's what I'm doing.  On the other hand, I didn't have 4 young children; mine were grown.  It's slightly possible I would have made a different decision if I had, but maybe not.  As to getting one's own fairly exact chance of recurrence, believe me, I've tried.  They just can't narrow it down to a precise percentage.  Going by the opinion of a few docs, my recurrence chance is 5-14%; considered very low.  On the other hand, a maybe 20% lifelong chance in the other breast, which obviously goes down each year.  Hope that helps. - P.

Nolton9

Hello,

Many thanks for your replies. Percy4 I know just what you mean about needing all available energy these days!! My youngest is only 4 so I somehow feel much too young to be contemplating a menopause or even two. I think the very fact that the zoladex has been presented as something to try has alarmed me.. making me think the SE must be hideous  but I guess many women cope or even adjust really well.

Thanks again, I'm always better with info from other ladies rather than leaflets.

percy4

Well; just remember your recurrence chance is cut by about half.  Ask your oncologist to do a rough calculation of your recurrence risk (they use tools like CancerMath, Adjuctvant Online, and I know the British National Health site has a calculator there, somewhere).  Then see what your absolute (real  percentage points) reduction would be.  If you're reducing recurrence chance by 15%, it may be worth it with a young family to be there for.  If you are reducing it only by about 5-8%, it may not be worth the side effects.  You can always try it and stop if the SEs are not bearable.  Probably what I would do if I had kids at home.  I had mine quite young.  I'm a "young" 57.  Still; my children are 37 and 40, so while I'd like to live my normal 35 years to come, it is not the end of everyone's World if I don't.  And I sure do not want to live whatever life I have left, whether it is 5 years or 40, feeling like crap.  Not good for anyone.  Now, if I had a treatable recurrence after this, THEN I would do the hormal therapy.

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Mouche

I choose not to do RADS and didn't want to do Tamoxifen either but gave in to the Tam which I started a week ago. My DCIS was a very tiny 2mm (low grade) that was found hiding in a 1.2cm complex selerosing lesion.

My doctors disagreed when it came to RT, but after a long consult with my RO and looking at my risk #'s, she backed the no RT.