Confusing stats on reoccurrence, help!

fredntan

I'm stage 4. Yes I am 2 yrs NED. Have been on chemo a long time. I started out as stage 3. My prospects are good BTW.

you have to have the right doctor

just take the damned pill and leave breast cancer.

if you get mood swings from menopause-Effexor for depression is also wonderful for this

farmerlucy

I freaked out the first time I tried Tamoxifen, and it was an entire year later before I tried it again. Starting again was perfectly fine with my onc. I did the best I could the first time and I can't get that year back. The way I see it, if I hadn't had the preventive BMX when I did it would have been close to another year before any screening found the nasty bugger, at the very earliest. You did the best you could. Just move forward from here.

Anonymous

Dcoded, great. You've gotten wonderful advice here. Write it all down to take with you, along with your fears, to appointment with MO but do pickup the script and start the Tamox. Doesn't hurt to start, you could always stop if you wanted though I don't believe you will. Pop it into your mouth then kiss those adorable twins and go on with life.

ChiSandy, not on the same day - Phooey! And only 2.5 oz - why that's only a drop - double Phooey!

Seriously, I loved reading through this thread. You all gave Dcoded great info without judgment; just what BCo is all about.

Carlsoda

Dcoded; I started tamoxifen on August 10th and so far so good. (Touch wood) no side effects, don't feel any different. Give it a shot!

DCODED

Yes, thanks again lovely ladies for sharing your experiences and all the heartfelt advice. I truly appreciate it.

Bonniebleu

DCODED - I was also nervous to start Tamoxifen, but started it in July. However, I had some side effects crop up and my MO said that the dosage is not one size fits all. I was on 20 mg a day, now going to start 10 mg a day. Just so you know that it can be adjusted. :

BarredOwl

Hi DCODED:

I am very glad you called in.

Some patient information for tamoxifen indicates: "Tell your doctor if you have ever had a blood clot in the lungs or legs, a stroke, or a heart attack. Also tell your doctor if you smoke, if you have high blood pressure or diabetes, if your ability to move around during your waking hours is limited, or if you are taking anticoagulants ('blood thinners') such as warfarin (Coumadin)."

Prior to taking the drug, the MO must be made aware of any personal history of blood clots and related medications. The MO should also be informed of your history of endometriosis and Graves' disease (osteoporosis risk)), so they can recommend appropriate surveillance (e.g., gyn exam) and baseline bone density testing, if appropriate.

If you did not discuss this history with the MO when he initially recommended tamoxifen, please call the office back and tell them "you received the prescription for tamoxifen, but before commencing use, would like a call back from the MO to discuss my personal history of blood clots in my legs, as well as potential osteoporosis risk (due to Graves' disease) and history of endometriosis." If you have a patient portal with e-mail, also send a confirmatory email to the MO using the same language.

Keep us posted.

BarredOwl

bluepearl

Didn't follow all the answers but if you have had blood clots in the past, NO tamoxifen. You could be chemically induced into menopause so you could take an A.I. instead of tamoxifen which doesn't carry a high blood clot risk. That said, you do NOT want any stray cells setting up camp WITHIN the next 5 years in either your bones or organs. The anti hormonal is designed to kill those stray cells BEFORE they nest somewhere. They could lay dormant for years and pop up. No one knows why cancer cells star reproducing, but they do and more so if you ARE hormone positive. So the idea is to kill them early. Other things you mentioned have not be clinically proven as effective as anti hormonals (or if effective at all). The onco score of 26 would be very wise to take an anti hormonal. If it were me, I would have taken chemo with that as well....but that is just me. We all make the best decisions we can.

BarredOwl

bluepearl:

Can you please provide a citation to a reliable source that says that no woman with any history of a blood clot in any area and from any cause (possibly no longer medically relevant), is completely barred from tamoxifen?

DCODED:

Please ask your MO.

BarredOwl

DCODED

I mentioned to the Pharmacist that I had blood clots in my legs post-partum - she asked if it was diagnosed as deep vein thrombosis....and it was not. So she said this would be okay. So my : take away from this is that DVT is definitely something to trigger discussion prior to taking Tamoxifen - but "surficial" clotting (which I had is less risky....

BarredOwl

Hi DCODED:

That is encouraging. Please do still review this question (and the other co-morbidities) with your medical oncologist, in case he has additional recommendations for you. When patient instructions say "tell your doctor if", they mean to tell the prescribing physician, in this case, your MO.

BarredOwl

exercise_guru

I am a patient who tried AI and then moved over to Tamox. I think the side effects are pretty manageable for me knock on wood and sometimes I wonder if I am even taking the drug. BTW Have you ask your doctor about that PR- and if that is luminal B? I think that would matter in your decision for hormone treatments.

KayMc1

Have you looked in to DIM?   Considering your reasons for not taking the Tamoxifen, seems like it may be worth your looking into this.

Anonymous

Thanks for the clarity BarredOwl and bluepearl. My advice to commence taking the tamox was with the thought that her MO would have already had the medical history which should have included the clots, etc.

Dcoded, pharmacists are very knowledgeable but the MO should also know of any contraindications when prescribing meds.

DCODED

I've seen a couple places on this discussion board indicating there may be some significance to being PR - ( with ER+) but I dont reaaly onow what that is...? And re: exercise guru comment I really dontknow what luminal B means...help pls

KMC1 - don't know DIM either?!

Meow13

PR negative is associated with luminal B, my PR was less than 1% and ER was 95%. I got a high oncodx score. I think there is a tendency to think hormone therapy works better on both ER positive and PR positive luminal A. I have not seen any conclusive stats on that being true. I am doing fine and I didn't have chemo just AI drugs. I'm 5 years in october.

Heidi000

I'm new here. Went through process fast. Diagnosed end of July. Double "m" Aug 2. Thought I was done, but oncotype came back at that gray number of 21. Had 3 consults and am so confused and hoping I'm not making a bad or wrong decision. I am 50 and have 2 children who are 20 and 22.

Being terrified of TC, I compromised on CMF with Lupron injections to go into menopause. I am starting treatments tomorrow and am really scared. I have no problem with the Lupron since I'm 50 anyway and and going into menopause is what my friends are all going through anyway. Is the CMF still overkill for such low percentages? My first consult with oncology said if I was his wife he would def do TC. I'm not willing to lose all my hair and feel sick. CMF seems like a good option (unless I feel really sick on it). My reconstruction is also delayed due to this.

What have others with IDC, Double "M", and all nodes clear. ER/PR positive and HEr2 Neg with an oncotype of 21 done at a close age to 50? I did BRACCA 2 years ago and all tests were negative.

My oncologist said she doesn't know what she would do and and there is no exact number in intermediated range that chemo is a "must". She also said that I can "quit" chemo if I'm miserable.

Any thoughts or advice out there? First appt tomorrow.

I wish us all luck and health.

Heidi000

Luckynumber47

You still have time to have the Mammaprint test done. There is no gray area, only high or low.

Doesn't your Oncotype give you percentages for how helpful the chemo will be. The number 3% sticks in my mind. Part of your decision should be if you are willing to take the chemo risks for a low %

My Oncotype was 18, the bottom of the gray area. We were surprised it was so high because my Mitotic rate was 1 and my Ki67 was 5 but figured my low PR kind of skewed the #. My MO did not recommend chemo and I was more than happy to skip it. I've seen many people here who skip chemo with your # but you have to decide what's best for you. Did all 3 of your consults recommend chemo?

Heidi000

I decided to do the CMF. 1 session down and 7 to go. Armed with anti-nausea and IBS meds. Felt fine yesterday. Today tired and a little queezy and slight headache. I'm relieved that I have chosen to do this.

I'm hoping to be able to go back to work as a diversion. Has anyone else? And how did it go?

Would love to connect with others going through same treatment.

Thanks,

Heid

Hopeful82014

Heidi, you might check out the "starting chemo in August" thread for others on CMF. There is also a thread for CMF specifically. I don't know how active it is right now but you may find it helpful even to read the previous comments.

Good luck with your remaining treatments!