ILC and LCIS effect on Oncotypedx

Helena,

Oncotype won't impact the decision for hormone suppression therapy. That decision is made due to the ER+ status of the tumor. Sorry. I am getting ready to start tamoxifen and am not looking forward to it.

 I just found this site and am crazy.  I too had ILC, and the size was 3.9 cm. and attatched to my chest wall. I also had the DX test.  My score they told me was on the low side.  I had a full masectomy in Jan.  Since then i have really been confused.  My surgeon and my onco. told me it was very aggressive.  I needed chemo and radiation. Went to M. D. Anderson for a third opinion and am still waiting.  I have decided to do treatment because if it should come back soon i would regret not doing treatment.  I am 52 and have not had menopause yet.  Well i say not but i haven't seen it since Jan.  My onocologist said the test would not be as accurate on ILC.  Please tell me what you feel.  Suppose to get mediport on Wed. 

Helena,

I guess the dose of Tamoxifen also depends on how strong your ER/PR is,  not only the weight.

Like what Impatientpatient said,  Oncotype test only helps to decide whether chemo is needed.  Usually low scores associate with high ER/PR+,  which HT will benefit more than chemo

My understanding is that Tamoxifen dosing is "standard," regardless of the size of the woman or the amount of ER+. I think they adjust the standard dosing sometimes if your doctor agrees to give you a "Tamoxifen metabolizing" test and then decides to do something with those results (many do not). But other than that, it seems women mostly do 20 mg once per day, with some doing 10 mg twice a day to attempt to alleviate side effects. I think it would be GREAT if they adjusted medications and other treatments based on a woman's weight (I'm on the small side) and type of cancer (does Tamoxifen even really reliably work long-term for ILC?) and percentage ER+. But it doesn't seem that this is the way things are done...

Roseann: Yes, I have the same question as you.

Rae: Sometimes those info. confuse me.....I saw somebody here with strong ER+/PR+ and HER2 negative 0, and low grade,  but her Onco score came back as high.....wow

BC has so many variables hasn't it? - no wonder we have trouble understanding it!  Bet even the oncs scratch their heads at times trying to work out what is the best thing to do - lol!

Helena - I was on Femara for 6 months but have now been on Letara (a generic produced by Douglas Pharmaceuticals that our government provides free) for the last 6 months and the standard dose is 2.5mg per day orally.  I read up on it and found it is a banned drug in sporting circles and that male body builders take it to drop their estrogen levels. The recommended dose for them is .5mg per day and that is supposed to drop their estrogen level to just 2%.  Five times the dose for women who are generally smaller than men seems a bit like overkill to me!! As you say there may be less side effects if the dose was adjusted but as someone said on the Femara forum 'the best side effect is life' so I'm going to keep taking the little yellow pill at full strength and grin and bear my aches and pains as best I can if that is the end result.

Enjoy your weekend ladies

Rae

Di, You're my oncotype buddy. I was a 13 too. No LCIS or multifocal for me, just one 1.4 cm ILC tumor.

I'm doing chemo, starting in May. I feel sick typing that, but that's the decision (made weighing a huge variety of factors) and I'm sticking to it (whimper!). Then I'm doing rads, and 5 years of Tamoxifen. Don't know what will come after that. One step at a time...

Travelgal69 and Jenny B

Reading back this is quite long and if you know this stuff don't bother reading it but, even though  some doctors seem to be very good at sharing information with ladies, some aren't so this info may be helpful to some of you who are not quite sure why chemo or HT or both was or was not offered to you.

There are all sorts of factors that determine post surgery treatment and as everyone's cancer is different the treatment options will be different. I guess when there is doubt the suggestion is to have the more aggressive treatment to make sure.

In NZ we don't have the Oncotype test and the factors that the oncs look at when deciding on treatment are: Stage, Grade, Node status, ER/PR status and lymphovascular invasion status.  This will be the same in the USA but they will take into account the Oncotype score too. Stage and Node status are pretty easy to understand but some of the other factors are not.

Lymphovascular invasion indicates whether the tumour has grown into nearby blood vessels which would allow cancer cells to have gone from the tumour to the rest of the body via the blood system. This is different from the lymph system which is checked in the Node status.  If there is lymphovascular invasion you may be more likely to be offered iv chemo.  Even though I had clear nodes and didn't have lymphovascular invasion I was offered Hormone therapy as a preventative as the onc said "we just don't know if some cells have made it into the blood system regardless of these two clear factors".  So if we don't take the HT we are gambling that stray cells haven't gone to other parts of our body via the blood or the lymph system regardless of clear tests. I am not a gambler so I take the little letrozole tablet every day and try to manage the SEs.

The Grade of a cancer is determined by three factors and each of them is rated 1-3 ( 3 being the worst). Mitosis score shows if it is a fast or slower growing cancer ie how quickly the cells are dividing (if this is high then the cells will generally be more sensitive to the chemo drugs). Nuclear score says how normal looking the cell nuclei (the middle part of cells) are and Tubule score shows how normal the pattern of growth of the cells is (if they are growing in a neat orderly way they will have a low Tubule score).  So, as an example, mine was early Grade 2 (score of 6) which was made up of Nuclear score = 2, Tubule score = 3, Mitosis score = 1.  Whilst the cell nuclei were quite abnormal and the pattern of cell growth was very abnormal the growth rate was slow so my onc said chemo would only give me a 1% benefit and the risk of damage from the chemo was not worth the benefit so I went straight onto hormone therapy after surgery because my ER/PR status was very good.

ER/PR receptor status is usually written as a +++ and a % on your path report.  This factor shows how many of your cancer cells use the hormones Estrogen and/or Progesterone as fuel to grow. The % score shows the percentage of cells that are sensitive to estrogen or progesterone so a high score indictates that Hormone therapy to stop the production (AIs) or block the absorption of the hormones by the cells (Tamox) should be an effective preventative for the recurrance of your cancer and for killing of any stray cells that may be lurking elsewhere in your body.  Mine was ER+++ 90% and PR+++ 80% so that meant Hormone therapy was going to be very effective for me as a treatment. The lower the score the less effective HT will be as the primary treatment but it may still be effective as a long term preventative.  Guess each onc has their own idea of that level.

Hope this helps.

Enjoy your day ladies

Rae

Thanks Sue. Nice to hear from you again.  With a Grade 3 and HER2+ I guess you were a "must have" chemo regardless of no LVI and no Nodes. I think it is just fantastic what the medical profession has figured out about our cancer cells and the new methods and techniques that have been created for use in BC and other cancer treatment.  Treatment can now be tailored for each individual! In the past BC treatment was pretty harsh - radical mastectomies and total lymph node removal, large scale radiation and chemo cocktails for almost everyone - but with earlier detection methods, less invasive surgery techniques, more precise radiation methods and individual drug treatment plans many of us are saved from aggressive treatment we don't need while treatment for those who do need more aggressive treatment must be much more effective.

Re biking - my daughter has nearly killed us both - after only 6 days she said "mum, let's do a bit longer ride" and I stupidly said "ok".  So off we went on Saturday and about two hours later, with very sore unmentionable places down there from sitting on a very hard seat, we stagggered home after 25 kms.  Sunday she said "mum, let's go for another ride to make the most of the beautiful weather" so sucked in again we set off and ended up doing another 25km!  - could hardly get off the bike when we got home - things were very numb in unmentionable places down there!  She wanted to go today and I said 'NO!"

Off to bed - am tired from all this riding!

Take care ladies

Rae

Ah, a bike ride would be nice. We just moved and are on a winding country road now, so biking with my kids feels more dangerous than it used to (we moved from a suburban neighborhood).

I'm starting chemo on Wednesday, April 28. I'm a little sick typing that...but here we go. Nervous!