Does Everyone with IDC have Chemo

linda614

bdavis 

I'm so glad I kept scrolling down the discussion board to your posts!  I had surgery about 2 1/2 weeks ago and just had my pathology report this past week.  It is almost identical to yours.  Reading all the posts about "decisions" on chemo had me wondering if it was the right thing for me.  I'm going to one of the top cancer research centers in the country and I trusted what they told me.  The other options was entire node removal on the right side.  Reading the aftereffects of that made me say "bring on the chemo".  But I have to admit it has me scared.  My mind is running amok!  Mediport in on Apr 26, Chemo on May 3.

But first I'm going to Ireland with students and having a damn good time!!!!

Chickadee

Thatgirl, no surgery.  Please note that I am Stage IV and that made a huge difference in the decision.  The onc stated there would be little statistical gain and surgery was my decision.  Without surgery they could observe if the hormonals shrunk the tumor, which it did initially.....80%.  That cancer cells are circulating already in my body will not be stopped by surgery to my breasts.

bdavis

I live by Princeton... at surgery at St Peter and chemo at my MO's office... My husband grew up in Ridgewood, so I know the area... and we used to live in Mahwah.

judyfams

ddavis,

Small world!  Remember the football rivalry between Mahwah HS and Ramsey HS.  When my son and daughter went to Ramsey High they were ardent Mahwah HS rivals!  Of course that was long ago as my daughter is 40 and my son is 34 yrs. old.

Good luck with your chemo and if you need to have radiation see if you are a candidate to have it done in the prone (face down) position rather than the supine (face up) position.  I had my rads that way and it was fine - no problems - but one must be a candidate for it.  Ask about it.

Judy

bdavis

Judy... a bit before my time... I am 48 and only lived in Mahwah when I was in my mid-20's for about 3 years.

I am trying to avoid rads, but if I see a RO I will ask about prone... what's the difference?

judyfams

The difference is that in the prone position the radiation comes from the right side and the left side onto the breast, not from above or below.  You are lying on your stomach with the breast handing down.  Therefore your armpit, heart, lungs, chest and ribs are NOT getting any radiation.  Besides having a breast the size to hang down (I am a C cup) the tumor needs to be away from the chest wall where the radiation can reach.  My tumor was in the 8 o'clock area.  The Valley rad. onco. wouldn't even discuss the prone position with me - even though I thought I was a good candidate from my reseasrch.  The prone position does have a different table set up then the supine position so it takes a few minutes to set up the table - maybe that's why he wouldn't even talk to me about it.  All he said was that I would be more comfortable lying on my back when I asked him about the prone position - didn't even get to the point of discussing if I could be a candidate for it!

The prone position obviously does not protect the breast skin from the radiation, so I did have some redness and soreness and tenderness - the skin never broke open, but the breast did hurt from the radiation which could also happen in the supine position.  So you could still get the breast skin problems from radiation in the prone position, but the other parts of your body are not getting the scattered radiation like they are when the radiation comes from above in the supine position. 

 I don't know why this is such a secret - if one is a candidate for this, the patient should be informed and the patient should make the decision as to which position they would like to receive radiation!!!!!!

Good luck with you initial rad. onco consultation!  I not only did radiation differently, I also refused to take an aromatase inhibitor and instead am taking Fareston which is called Tamoxifen for post menopausal women and have no side effects.  Another well kept secret in the world of breast cancer treatment -WHY???????????

Judy

bdavis

Thanks for the info

Chickadee

judyfams you intrigued me.  Fareston..(Toremifene).....no side effects?  However when I googled it, it lists the exact same potential side effects as Tamoxifen. 

I found this info interesting:

Unlike tamoxifen, Fareston isn't affected by the CYP2D6 enzyme. The body uses the CYP2D6 enzyme to convert tamoxifen into its active form. Two things can interfere with the body's ability to make this happen: a flaw in the CYP2D6 enzyme and certain medications that block the effectiveness of this enzyme. So Fareston may be a good option for anyone who has an abnormal version of the CYP2D6 enzyme or is taking another medicine that blocks CYP2D6 activity.

Diagnosis: 9/1/2009, IDC, 2cm, Stage IV, mets, ER+/PR+, HER2-

judyfams

Fareston does have similar side effects to Tamoxifen because it too is a SERM.  However since it uses a different metabolic pathway than the Tamoxifen, Fareston's side effects (while similar) are fewer than Tamoxifen and less severe than Tamoxifen.

Try to GOOGLE the following to read an interesting article

 Medwire News Toremifene potential alternative to tamoxifen for HR-positive breast cancer

I also posted a discussion here on Fareston and some women replied and they too have had no side effects.  one lady has been taking it for 2 years.  Click on my name to find the thread I started about Fareston.  It seems that it is being used for both pre and post menopausal women. 

Good luck!

Judy

Cheryl1884

DebRox,

In  2001, I was diagnosed with IDC, stage 1, no node involvement.   I was ER and PR positive and Her2 - negative.   I had lumpectomy, radiation and hormone therapy (Tamoxifen & Aromasin) but no chemo.    Sending loads of support to you.

  Blessings and Hugs,       

thenewme

Hi DebRox,

How are you doing?   It's been a while since you started this thread.  Have you decided on a course of treatment?  Hope things are going well, whatever you decided.

JudyFams, it sounds like you've had some pretty rotten doctors!  Hopefully you've been able to find someone now that you can trust to work with you and give you good, reliable information and recommendations.  Radiation positions, dosages, patterns, etc - are variable depending on lots of factors, and if you were given bad information from your doctors, hopefully you've reported their negligence.  Patients deserve accurate, credible, and reliable information pertaining to their individual circumstances, and any doctor who offers less than that should be reported, IMHO.

Here's a BCO article on Fareston for more information:

http://www.breastcancer.org/treatment/hormonal/serms/fareston.jsp 

judyfams

Fareston was originally used for breast cancer metastasis. Then it began to be used for post-menopausal womem who could not tolerate the side effects from the Aromatase Inhibitors, and finally has now been also used for pre-menopausal women who have the gene that does not allow them to metabolize Tamoxifen.

Fareston has been around since 1995 - not as long as tamoxifen, but about the same time as the Aromatase Inhibitors.

Women on this site have also stated they have not experienced any side effects other than the usual menopausal hot flashes etc. with this drug.

It is worth speaking to your oncologist if you are unable to deal with the more severe side effects you are having with your current antiestrogen drug.

I just wanted to let you know there are other options available. 

Judy

Plils

 Hello beautiful ladies,

I am so confused on what to ask and what to do.  I am also a newbie, I am 46, I was diagnosed in March with IDC Stage 1, Grade 3, ER/PR+, Her2/ Neg, had a lumpectomy with a SNB with 6 lymph removed 4/7, with clear margins and no nodes involvement. I just got my Oncotype results which was a 17, now I am waiting on my BRCA 1 & 2 because my mom was just diagnosed 7 months ago with IDC, her mother died of ovarian cancer and my other grandmother died of colon cancer which makes me High Risk. Depending on BRCA test will determind if I have a double mastemocy and oophorectomy since I only have the right side left but, if it comes back negative then I have no clue what to do???

One more thing for the past 3 years I have had my yearly mammogram and had to go back for more pictures and ultrasound's saying that both of my breast are heterogeneously dense, mostly in the  the right breast, both demonstrate scattered fiboglandular densities and my cancer was in the left breast.  I am so confused and will have my next appoint with onocology this thursday.  I am scared to death on what to do, any suggestions!!!

Hugs. Pam

bdavis

Plilis... I don't have family history,but after my lumpectomy and SNB, I have now decided to have double MX... and skip radiation. This will reduce my risk of recurrance locally by about 10%, and for me, it is worth the extra peace of mind... If I had radiation on my left breast, I run the risk of damage to my heart and other undesirable possible radiation SE... and more improtantly it doen't resolve any possible problems I might have with my right good breast and they are already keeping their eye on something... so to eliminate MRI, biopsies etc and possible recurrance or new cancer, I am replacing that bad tissue with some good ole tummy fat.