TRIPLE POSITIVE GROUP

I had a mammogram done yesterday, My results just come in negative for cancer another year down !!!

I've been on Arimidex for over 3 years now. Have joint pain and neuropathy. The worst part is trigger fingers. I had a cortisone shot in my dominant hand because my fingers locked when I picked anything up. I had o physically open my grip with y other hand. I have 2 trigger fingers n my left but they don't bother me as much so I didn't get the cortisone shot for them. I have joint pain and neuropathy from other things so can't blame them all on Arimidex. LOL

I've stuck with it as better the problems I know. I have diabetes and a pacemaker and take meds for the big D still giving me issues 3 years out from chemo. I am low on magnesium and still take 4 supplements a day and still below normal so I feel sluggish. Oh well. I get along pretty well.

Someone was asking about cutting doses on Carbo. I had to have my TCH cut by 30%. When i asked my MO if it was still going to work he said, and I quote "You have to be ALIVE for any of this to work!" Good point! LOL

We all do the best we can do with what we've got. My EF dropped from 60% to 42 right after I started Herceptin only so I had to stop after my first H only infusion. Since all the studies show it works best with chemo I have to hope it's enough!

I just lost my SIL to mets last month so I know anything can happen but I WILL LIVE MY LIFE. I don't know how long I have but then no one really knows that anyway. So ill just live.

Much love to all

Good news, Ang! I know I must be crazy, but I really don't mind getting mammograms.

I am still wating for my suppression meds. They are doing a bone density scan first. What does this entail or tell them as far as my options? I am 35.

Besides taking calcium and vitamin D, weight bearing exercise like walking is one of the best ways to keep bones strong. Love, Jean

Hi all,

I'm newly diagnosed (10/15) with stage II, grade 3, +++ bc. Not quite sure how to dive in here, and generally feeling a bit overwhelmed.

Treatment plan from the local community hospital's cancer center is neoadjuvant TCHP, then surgery, then rad (depending on type of surgery). I have a second opinion at a nearby academic medical center on Wednesday, but it sounds like the plan I have is pretty much standard of care for this kind of cancer.

I'm 39, and very worried about the long term effects of chemo and other drugs. Research usually calms my fears, but when I started researching, I thought hair loss was going to be my biggest problem! Now I'm trying to find a balance between being informed and totally freaking myself out. And mostly failing! Ha!

Furiosa, I understand completely. I have a research brain, and since my diagnosis in early July (followed by a UMX four days later), I've learned more than I ever cared to know about BC, +++ BC in particular. Sometimes I freak myself out to the point of near-paralysis; there's a fine line between full-immersion research/learning and obsessing. I'm still trying to decide what to DO with everything I've learned (I'm a pragmatist in a lot of ways), too. If it matters, I'm 36 and have had similar thoughts/feelings regarding the long-term effects of chemo, but here's the thing: with +++, chemo is a given. We pretty much just have to do it, because the other option is much worse than long-term effects of chemo.

I second zjrosenthal's sentiments. Build a medical team that you trust, and don't be afraid to ask your questions--that's part of why they're there. Given that the treatment for +++ is relatively standard (the big variables are neo-adjuvant chemo or adjuvant chemo, AC-THP or TCHP as the chemo itself, rads in certain circumstances and not in others), what may be most important for you is feeling a rapport with your MO.

I, for one, went with the academic medical center, but several factors figured in to that decision. Go with your gut.

This board has been fantastic. I've learned a ton from reading through this entire thread, and from asking specific questions and getting answers (thanks, SpecialK, Iago, and others!). In short, you're in the right place.

My own dilemma: I've all but decided to have my other breast removed. I've always had dense, "lumpy" breasts, but I've noticed the remaining one smoothing out since I started chemo, which freaks me out a little. The big question is how to get my insurance company to pay for a surgery that isn't "medically necessary." Since I don't plan to do reconstruction, I wonder if any of you have any advice; perhaps I could pitch it to them with an argument for symmetry? My partner, family, and friends seem to think I'm being a bit over-zealous with this plan--in their minds, we're treating the cancer that was there, so why not just wear a prosthetic?--but losing lumps that I've had for years makes me wonder if those lumps were made of cells that had sinister intentions. Thoughts?

Kate

There is long established federal law regarding mastectomy and reconstruction. My understanding is that you have legal right to have the other Breast removed and reconstructed

Don't recall anyone in the forum having a problem with insurance on this matter .

My Breast surgeon actually told me that if I changed my mind. Now...4 years later..I could have double mastectomy approved by the insurer.

http://www.cancer.org/treatment/findingandpayingfo...

Kate,

Even though contralateral breast cancer is pretty rare, lots of women choose to have their "healthy" breasts removed. They often do so because like you, they don't trust mammograms or other scans to pick up any new cancers. Some also don't want to get regularly scheduled mammograms and to endure the anxiety that such tests entail. Finally, some want to achieve symmetry -- either matching implants or matching flatness -- in their appearance. Of course, BMX is no guarantee that there won't be a local recurrence because there's always some (small) amount of breast tissue that remains. However, some women who get BMX end up worrying whether they are getting enough "follow-up" care because they no longer see their medical team as often. As a triple positive, you will probably be seeing your medical team plenty, because of that year of Herceptin. By the time you finish that year, you might be happy to have limited interaction with your team.

For me, I opted for lumpectomy out of sheer laziness. I wanted to have some boobs present but didn't want to undergo reconstruction, which can entail several surgeries. I do have to get mammograms every six months, but that's OK with me. My MO is also a heavy scanner so I will probably have an annual MRI as well. I've always figured that if I have a local recurrence, I can get a mastectomy (or BMX) then. But, once a boob is gone, it's not like you can grow a new one, so I held on to my "healthy" breast.

Best wishes! I agree with the others; you shouldn't have any problem getting insurance to pay for an additional mastectomy.

Well, definitely tell MO about the joint/muscle pain and weakness, and see what she says. Has it been definitively determined that you have Lyme/tick-born illness? I also developed mild neuropathy on Taxol, but it went away. When are you taking your Aromasin? I have to eat before I take my Aromasin, or I'll have a headache.

Lakeside,

I would ask MO about whether or not she could order some scans to try to determine the causes of the hip/back pain. Also, she may be able to refer you to a pain specialist who might have some ideas about how to manage the pain you have. I'm not sure about what can be done about neuropathy. I have a friend who has been diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and he's being treated with intravenous immunoglobulin (IVIg) therapy. Best wishes!

lago - just the 10-year convo with my MO in June - he wants to do the Breast Cancer Index test to see if it indicates continuing AI benefit for 10 year recurrence prevention.  I am not sure how my insurance company will feel about paying for this, I don't believe it is currently FDA approved - so I have a feeling they will consider it "experimental", but he may have some thoughts about how to get it paid for if they deny.  I did broach the subject of changing to Tamoxifen after five years on AI drugs, but he was meh about it.  He did mention that we have to weigh whether benefit from Femara outweighs any damage it may inflict past the 5 year point.  Here is a link to the BCI test, I am curious about other oncs feeling about it: 

http://www.answersbeyond5.com/

Will do!  One of the better things about Pinktober here in my area is that organizations are starting to donate directly to oncology treatment facilities to be used for things unpaid for by insurance, and I know my center has one of these funds.  When I first got Prolia they had not yet received the auth from my insurance company, they had me sign up for the drug maker replacement plan - it covered replacement of their supply of Prolia if my insurance company denied payment, so I would not be out of pocket for it. My center's folks seem adept at the workarounds. The Prolia was covered so it was a non-issue, but I know my insurance denied my Mammaprint test early on due to their interpretation that it was "experimental" even though it was FDA approved at the time, so who knows.

Amstar a friend of mine is doing Luprin with Anastrozole (generic Arimidex) and doing fine. She's now 54. Can't do Tamoxifen due to blood clots. I switched from Anastrozole to Exemestane (Generic Aromasin) and found the side effects to be less on the Exemestane. I was peri menopausal and kept my ovaries. Be sure to ask about taking a bone density test before making a decision. I was osteopenic before chemo but I felt the Anastrozole/Exemestane, etc had less serious side effects than Tamoxifen and a little more effective. I did not do the ovarian suppression because my oncologist felt I was close enough to menopause she also tested my estridial levels to be sure I stayed in menopause for 5 months.

Lucky you, Amylsp! Congrats! I'm still weeks away from my final Herceptin. I'm supposed to get an infusion tomorrow, but something went wrong at my local infusion center and I'll have to drive to a different branch in the city. Then, they keep changing the time of my appointment. Argh!