Treatment Options for IDC

Just_Win_Baby1

Hello,

I've done a lot of research since my diagnoses on Sept 7.  Here are my stats:

Left breast; 1 lump; 40 years old; no familiy history of any cancer; no kids (I chose a long time ago not to have kids)

Surgery completed on 10/16 - This 2nd surgery got it all with good margins

Stage 1; negative lymph nod; estrigine positvie 95% (Waiting on BRCA1/2 and Oncotype DX results still)

I'm not happy with the 'typical treatment plans' and the many, MANY side effects.  Friday I have an appointment with my Onco doctor to review her recomendation, to be honest, I didn't like her when I met her(bad sign for me I like most people)

I know she will 'push' chemo and tamoxifen on me.  She started this even before the surgery.  I'm considering the following treatment plan for me based on the research I have done here on breast cancer.org; national cancer institute and Kaiser own internal patent web site.

-Radiation to kill off any remaining cancer cells left in my left breast.

-Ovary removal to treat the estrogen positive diagnoses.

I'm wondering if anyone has choosen non traditional treatment options and how they are doing today and if they would have done anything different?

Thanks for you help

FilterLady

Hi Just_Win,

I was 55 at diagnosis with no family history of breast cancer but my Momma passed away from lung cancer almost 6 years ago. 

You can see from my signature about my 2 surgeries and my treatment.  I finished my rads on January 19, 2012 and am praying that I remain NED (no evidence of disease) for life.

My MO did not recommend chemo based on my diagnosis and I'm happy I didn't have that challenge.  I had a complete hysterectomy in 2002 so I didn't have that to face.

I'm doing great and I am comfortable in my decisions for my treatment.  Everyone has to do what they believe is right for them based on all the information from their pathology reports.

These boards are just wonderful and there is a wealth of information and advice from lots of caring women (and some men too). 

God bless you,

LaDonna

Just_Win_Baby1

Hi Filter Lady,

I'm sorry to hear about your mom. Losing a parent is tough I lost my dad 4 months before I got married 15+ years ago.  The hole left by their passing never gets better, you just learn to deal with it differently every day.

Thank you for sharing your story and glad you are comfortable with your treatment plan.  I have a feeling I'm going to have to 'design' my own.  I think because my BC is SO common they default to 'standard treatment' without really asking the patient what's more important to you:  a) living to 60 healthy or b) living to 80 with a bunch of health problems left behind from the side effects.  For me I prefer quality vs quanity. Seems like a simple enough question to ask.

I also found an artical on this site that broke down the 'real' risk numbers.  For example, the doctors will say if you take medication A you can reduce your reorrance by 25%.  I'm sure most people hear at that and say "WOW!  Ok sign me up".  But what that 25% 'really' breaks down to is with out medication A, you have a 12% of reocurrance vs 9% if you do take medication A. So the reorrance is not reduced by 25% it's only 3% (12%-9% = 3%)  the differance between the two number is 25%. 

Just knowing this, was VERY helpful for me so I can ask questions with a better understanding of how to read the percentages, 'really'.

Have a blessed day.

Rachel

NatsFan

Just - you said you're uncomfortable with your onc.  This is a relationship you're going to have for years, and it's best to have a partnership with your onc rather than being at odds all the time. Your very life is at stake, and you need to partner with an onc you trust and can work with to have the best possible chance of saving your life.

I would highly recommend that you get a couple of second opinions and find an onc with whom you can partner.  There are oncs out there who don't just practice "one size fits all" oncology, but who take the time to work with their patients and respect their patient's wishes.  These oncs will partner with you to get the most effective treatment that you're comfortable with. But, sometimes you have to do a bit of work to find the onc that's right for you.  While you know your own body best, oncs know a lot more about cancer than you do.  The best patient-onc relationships fuse those different knowledges to come up with an individualized treatment plan that's best for the patient.

I've found the best way to find other oncs is to get recommendations. Call your PCP, call your gyn, call any other medical professional you see regularly and ask for their recommendations.  Ask friends, family, co-workers, neighbors, etc. who have had cancer for their onc recommendations.  If you ask enough people, chances are that one or two names will keep popping up.  Make appointments with those oncs and see what they say. 

Good luck!

Megroy23

Hi. Knowledge is power and it sounds like you are taking control of your health as you should! I was just diagnosed and immediately had a advocate at out hospital who does nothing but advocate for the patient in finding the right team. I highly recommend you go with your gut and talk to a few more oncologists. When it comes time, you want to know they see you as a individual case. My is IDC stage IIIC w positive lymph nodes but I am in medical field and grew up w cancer all my life until my mom died of ovarian when I was 15. I found a med onc who truly listened to my idea of my treatment plan and he agreed that I should do chemo before surgery and why-,in my case, I will feel tumor shrinking due to its location and that is a positive to see early on if I respond. My point is he even admitted there Is a protocol for this common of a brca but you deserve to find someone that you look forward to seeing knowing they are only thinking of you and your Dx when you are in the room. It's worth the time. I am two chemo treatments in and I had trouble with first one but my dr tweaked the meds per and post chemo and this time I had no side effects at all! Do yourself a favor and equip yourself with the best team you can find... It's a temporary but long enough road that you will be thankful you put the time in to finding the right people. Best of luck!

foxford

Just_Win, I just found your thread and I like the way you think. I have a similar diagnosis and I, too, am looking at options. 

My story is this... I am older than you are, 53. No breast cancer in my family, but a father that died of lung cancer. My husbands mother died of breast cancer so he is very concerned and protective. He likes the traditional routes... safer. 

I have IDC also, but complicated by a lot of LCIS (not a cancer, but a cancer marker. I have a much greater chance of getting more breast cancer) I have already done a lumpectomy and am now being prodded toward a mastectomy. I have to have an MRI every six months, but due to 'dense, busy breasts' they will always show 'something'.

I had not considered ovary removal to treat the estrogen positive diagnoses. I like it!

Radiation was put off for me as they detected a heart problem, genetic and I had to have heart surgery after my lumpectomy. It has been a good year. (insert big eyeroll here)  So, now a mastectomy is not what I want to do. 

Anyway... let me know what you find out and I will do the same. This will be a journey, no doubt. 

LScott63

Just wondering how many of you are going to a Cancer Care Center?  My team was hand picked by my Breast Cancer Surgeon and they all work together.  Once a week they have a meeting and discuss any active cases.  They all knew my concern about not wanting Chemo and ran my Onco test.  Also my surgeon writes grants for research at the hospital so she really pushed for me to have internal radiation.  There is less side effects with this over external.  (Just another thought....sorry like you don't have enough information).    I can't imagine not caring for anyone on your team, please keep looking for a good fit as you will be with these people for a long time!!!

Good Luck with your decision.

SpecialK

just win and foxford - I think having an Oncotype DX will provide good information in terms of whether chemo would be beneficial for you.  Also, echo the thought that finding an oncologist who is a better fit is important.  For you both - removing ovaries does not solve your ER+ problem.  The percentage of ER given is a measurement of the receptors on the cells - removing your ovaries does not change this - it only removes a source of estrogen in the body.  Estrogen will still be produced in other parts of the body and this is why tamoxifen or an aromatase inhibitor is needed even by women who have had their ovaries removed.  At the age of 40 removing ovaries can prompt heart disease (raises cholesterol) and osteoporosis (weakens bones) so you may be thinking you are solving one problem but you can create another.  Other issues with surgical menopause include hot flashes and sexual side effects, mood swings and depression.  The reason Tamoxifen is prescribed to pre-menopausal women is to block the cell receptors but still allow estrogen to do the good things it does for the body.  I understand being concerned about side effects from drugs but the side effects from surgical menopause are no joke - I can testify.  I had my ovaries removed 11 years ago in a total hyst/ooph but still had 96% ER+ breast cancer.

SelenaWolf

SpecialK... well said!  I've tried to express that same sentiment (a prophylactic oophrectomy can often cause more problems than it solves and sometimes doesn't solve the breast cancer recurrence problem) a few times, but you've expressed it much better.  

My mother had a complete hysterectomy when she was 50 years old and developed - like you - a 95% ER+, aggressive breast cancer at the age of 74.  I'm fairly convinced - as is she - that her current health issues, which include heart disease, stroke, osteoporosis and severe, debilitating arthritis, stemmed from that early hysterectomy.  But, in those days (when my mother had the hysterectomy), when a women had "woman problems" (which included everything from bad periods to migraines to moodiness to serious gynaecological issues), the solution was to perform a hysterectomy as a matter-of-course.  Thankfully, the thinking seems to have changed.

Tinatess

I agree with looking into things, tamoxifen seems to be less effective than AIs so,

if you have your ovaries removed you can look into different hormone treatment.

Biphosphonates is another interesting trial for prevention of bone metastasis.

Please look into metformin trials as well!

New and important treatment in sight?

http://clinicaltrials.gov/show/NCT01101438

Scary truth or faulty research?

http://newsroom.ucla.edu/portal/ucla/radiation-treatments-generate-229002.aspx

Anyone discussed this with their onco?

Urgent! Any thoughts on re-excision vs mastectomy for stage 3 grade 3a high ki67 er/pg+ her2-,luminal B, 1 lymph node involvement, all removed, IDC?

Already had a lumpectomy with one margin that was not clear so, need to go back either for re-excision or mastectomy.

Any statistics for recurrence?Tried to look it up but, not very clear results and sometimes very small samples!One would think that with all the women with cancer, the advances in data and statistics, they could come up with more detailed and accurate data for recurrence and metastases!:-(

SelenaWolf

Lumpectomy + radiation has the same survival statistics as mastectomy alone.   This means that whichever surgery you decide to move forward with, your risk of developing metastatic breast cancer remains static.  It is my understanding that your risk of developing a distant recurrence is more dependent on the current stage/grade of your cancer (and any systemic/hormonal treatments you have) than the type of surgery you choose. 

The difference between the two surgeries is with local recurrence: a mastectomy has a 1-4% chance of recurring locally; a lumpectomy + radiation has a 5-8% chance of recurring locally.  It is a very slight difference, but it is there and some women simply do not want to take the risk; however small. 

Just_Win_Baby1

Thank you everyone for your thoughts and support on this question.  I have met with my doctor, armed with a presentation slide deck and a list with MY concerns of chemo side effects and the 'late effects' to MY quality of life (all shown in a charts and graphs)  My Onco DX results was at 26 (25 is the middle)  they do not know if chemo helps the folks in the middle so it was presented as an 'option' and she saw just how armed I was with information... She said "I'm impressed, I've never had a patient go this far and take control of their treament plan this way."  

Tinatess

"Just win baby" I will say it again, you are so right to try and take control of your treatment. Stage one does not usually need chemotherapy especially with no node involvement. Are you sure you are IDC? Was there vascular involvement in your pathology report? Did you have a high Ki67? Did you come back with positive family gene mutation? If the answer is no to all these, then chemo is just overkill ( and can "kill" you too )!

Best of luck abd keep up with the reading!

CelineFlower

Fat also produces estrogen...

how many of these women, who had their ovaries remouved were also over weight?

the food industry has a lot to own up to IMO..