Recurrence after bilat mastectomy?

Um...how am I lucky?? I'm stage IV. I found out that a CT last May showed a lump in that area and my "new" onco (I moved to another area) was more concerned about her retirement and didn't even touch me, or, apparently check the CT results! Pissed. Yes. Lucky. No.

Hi there, I am on my THIRD BATTLE with cancer....My first time 2004 invasive lobular carcinoma...I had 2 lumpectomies, radiation and then did tamoxifen for 2yrs only becuz it was affecting my liver. Then 2009 I had a lump removed from my right underarm and biopsy showed it was a very aggressive cancer in my breast accessory tissue, there were also some suspicious areas on my LEFT side. I was told I definitely needed a right mastectomy, but I opted for a DOUBLE...can't keep going thru this every 5 yrs!!! They also removed ALL my lymphnodes on the RIGHT side and 6 on my left side...I had immediate reconstruction and then did chemo 4 mos of chemo, followed by exchange surgery, then radiation. I was then put on Femara which I was on for 5 years. Then in October 2015 I had terrible lymphadema in my right arm, it really was painful, like it was in a vice, very swollen and felt like it weighed 100 lbs!!! I went to my oncologist who ordered a doppler ultra sound to rule out a blood clot. That turned out negative. Then she ordered cat scans of my upper chest, neck, clavicle areas as well as my lower body, abd/pelvis. This was right before Thanksgiving. Turns out I had a large tumor embedded in my brachial plexus and it was wrapped in scar tissue which I have a ton of that is quite painful...Well the tumor was pressing on my arm/shoulder area causing the swelling and pain and lymphadema. She said I could not have ANY MORE RADIATION (after talking to my radiation oncologist) that I have already had too much in that area! She said she spoke to a couple different surgeons and they BOTH agreed it was too dangerous, too deeply embedded and near my main aorta!!! So my only option was more chemo!! She decided on Taxol for 12 weeks...After 8 weeks she had me have REPEAT CAT SCAN of neck, chest and clavicle to see if the chemo was working...Well the scan showed that it had shrunk some...Yeah good news for a change!!! But then she said my cancer is TREATABLE BUT NOT CURABLE!!! That I would need to be on CHEMO FOR LIFE!!!! I thought I heard wrong!!! Never heard of this before!!! She was putting me on a 3 week on 1 week off infusion schedule...instead of every week as I had been doing THIS time! She explained that if we were to stop chemo, the tumor would just grow back, even bigger and it has "fingers" that could reach out and attack my other organs! I have lots of side effects from the chemo...hair gone, no eye brows or lashes, or body hair...tingling fingertips and toes, bone pain, fatigue, back pain and lots more (those r the worst ones to me) I wear a wig and draw on my eyebrows but really miss my eyelashes...I also have watery eyes constantly (another side effect) I have worked as a medical receptionist/office mgr for 29 years. I now can only work 3 days Mon/Tues/Wed and I get chemo on Thursdays.... Everyone tells me how in awe they r of me and how I'm handling this...but what other choice do I have??? I'm not going to lie...I have good days and bad days...I hate that I will never have hair again...I worry that I won't get to see my three sons graduate college, get good jobs, get settled, get married and be a Grandma....I have done EVERYTHING I was supposed to do and yet the cancer has returned....I'm sure I'm not the only one and would love to hear from others....Thankyou for listening, xo Paula

Yep, Paula, you've been through the wringer!! I, too, have to be on chemo for life. Right now it's just an AI in pill form, but if/when that stops working I'll have to go on IV chemo. We can do this. Together. You are not alone.

Ok Barbe

I finally see what you mean. I've been so naive. Denial big time. Is anyone offered ibrance? It's basically a lifetime chemo or until it stops working? I just do not understand why they haven't offered me everything in the arsenal.

BC 2.x 3x 4x. How they can't see it coming and try to prevent this .!!!!!! It's really hard coming terms with ok this is my freaking life now.

My goodness bw for what. Now I'm really pissed. Never in my nodes now here it is again.

I'm afraid of the ibrance pill it's sitting on my table. Then I start feeling pain so I grab the bag. Then stop.

I'm so afraid the pill will make it worse when it stops working or if I start and can't take it after a couple of weeks.

Did anyone take Aromasin? Heartburn is so severe. I never had heart burn either.

Paula I'm sorry. It sucks.

Lexie get a mri.

I agree with Barbe.

Just saw my doctor and she diagnosed Gluteal tendinitis or better known as a pain in the butt! She gave me a shot of toradol (OUCH!!!) and referred me to physical therapy. She said if it doesn't improve to come back in for scans.

I never heard of infusion chemo "for life" before....treatable but not curable?? No end in sight, no goal...my life has forever changed... So I would love to hear from anyone else dealing with being a LIFER!!! I really miss my eyelashes, I know that sounds trivial...but I'm being honest! I mean u can wear wigs or scarves or hats, you can draw on eyebrows! But lashes?? What do any of you do??

How do you deal with terrible bone pain from chemo?? I can't do Percocet or Vicodin, they make me very nauseous!! I take Advil...but it's not even taking the edge off! My Oncologist does NOT give out rxs to get a medical card...what are your thoughts on this topic?

Claritin D 24hrs before neulasta

Not Claritin D---plain Claritin for the bone pain.

I've been on the non-D for about 4 days now and am seeing a HUGE difference today! I can't believe it! Even missed my lunchtime narcotic and didn't even think of it until after 2. I'm very happy so far and hope it continues. Not a cheap drug, but perhaps it can be written as a prescription (the active ingredient) so my plan will pay for it.

I'm getting heart burn from Arimidex so I always keep water with me to dilute the stomach acid. I'm hoping my body gets used to it and fights back. It's the bladder infection I'm worried about again....

Have you tried Benadryl for itchiness?

Side effect of Arimidex, yep. Not looking forward to seeing my MO next week as he put me back on it, but from some of the charts I've seen it only provides a 2% benefit?? Are you kidding me?????? All this crap for 2 %? No thanks.

I'm going to ask for medical marijuana if he insists, to help with the headaches, nausea and pain. Wish me luck.

Of course if he says no, I'll just buy and smoke it but then I'd get stoned. If I get medical pot then I won't get stoned. His choice...

Thanks gentianviolet. I don't have one this time after two weeks but I am taking cranberry capsules. Yikes!!!