Lumpectomy Lounge....let's talk!

Fgodmother, I was digging holes and planting tomatoes 3 days after lumpectomy. Maryjo, thanks for the advice with the hysterectomy and wt loss. I lost almost 50 lb over 2 year period, but have gained 22 lb back in the last year or so. Haven't been able to exercise much in the past few months, but plan on doing better after the hysterectomy when I can get a break from the surgeries and treatments from the cancer. Thanks to all for your support and advice. Good luck everyone with your appointments! Created, your mom is AWESOME!!!!!!

Thanks everyone for the virtual high fives, need all the motivation I can find!

LG, I finished radiation June 30 and gave myself the summer off from any treatments and scheduled my hysterectomy for October after my nephew's wedding. As it was prophylatic there was no rush except I wanted to have it done in 2015 once I made the decision for insurance purposes. Know how you feel, I totally lacked motivation when I had a high stress job. When I thought, I would have time after retirement, BC was front and center gained 15 on steroids. Anyway, my motivation now is that I want to do everything and anything to help prevent a recurrence. This is not the first time I've lost weight but hope it is the last time and that I don't regain. Good Luck, Mary-Jo

Of the three Letrozole formulations I’ve tried--Femara, Teva and Roxane--Roxane seems to go the easiest on me, perhaps because it has fewer additives than even Femara. Normally, Teva is the generic preferred by many doctors for active ingredient, price, and fewer SEs. My insurance (Humana Enhanced Medicare Part D) considers even generic letrozole to be a “non-preferred brand” because only generic anastrozole is in its “preferred generic” tier. It will NOT cover Femara at all, even with the prior authorization letter from my MO. She prefers letrozole because she claims its benefit-to-SE ratio is better for women with mild-to-moderate obesity. My friends who did fine on anastrozole are all quite slender. Humana’s step-therapy requirement is that one’s doctor has to certify that a patient tried generic anastrozole for three months and it “failed.” (How do you prove an AI “failed:” a tumor recurrence or even mets?)

I ordered Femara (Novartis UK version) from CanadaDrugs.com for $588 for 90 days. Pricey--but bought in a U.S. pharmacy it’s $2700! It took too long to arrive, so I filled a scrip for the generic. My cancer center’s outpatient pharmacy carried the Roxane version for $10/mo, but it’s not on Humana’s “preferred pharmacy” list. Walgreen’s and CVS refused to guarantee which generic I could get--“you get whatever we have on hand and corporate says is the cheapest for us.” In that case, it was either Sun or Accord--both formulations notorious for worse SEs than Teva or Femara. My local indie pharmacy (which is on Humana's preferred list) said it could get me Teva, but for the first couple of months they could only get Roxane--$9/mo. Then the next 2 months they could only get Teva, and it was $17. This time they could get Roxane--but it jumped to $27. Still not as pricey as it could be. Not sure if the main reason was Humana’s idiosyncratic tier-classification, or just a case of generic mfrs. jacking up prices because they can.

2 days is way too soon to fly after any surgery--bc or orthopedic--because of not just fatigue and range-of-motion restriction but the very real danger of either DVTs (clots) or paradoxically, bleeding. It has nothing to do with LE risk, whether or not you wear compression. (Trust me, donning it is gonna hurt like hell while you are still dealing with a lumpectomy and an SNB incision--the upper band could irritate the incision or the seroma forming beneath it, and your more limited ROM will make properly and fully donning a sleeve difficult. And air pressure changes could exacerbate breast swelling. I was told to wait at least a month after my lx--and 12 weeks after my knee replacement.

Just wanted to update with results from my MO visit yesterday. Assistant MO said the trial study assume chemo starts within 8 weeks of surgery but my MO said within 6 months was fine...still I wonder. Wish I could get a second opinion. Enough time has passed since rads should not have rad recall. Have to stop Letrozole. Also plans on some bone injections 2 x yearly.

Regarding the small size it seems the Ocnotype score trumps the pathology report but when I look at it and it is based on only a small group of 668 patients I cant help but wonder. So my choice is stay with the recommendations given on the pathology report or use the test results. My MO says she would do the chemo.

Wow, my life has turned upside down just when I thought I was putting this in the past. Yes Grazy, your Mum was right in her saying "dont borrow trouble".. I thought I would get a result to stop my worrying but no.....complete opposite. Have to decide in 2 days as she wants to start ASAP. Made an appt to check my veins and chemo teaching on Thursday.

Moondust. I agree many wonderful ladies has passed through these chemo doors and bless their hearts. I admire all of them for their strength and courage.

From what I know it would take too long to get a second opinion set up. I asked about that test but again time and not enough tissue left.

Grazy, I have thought of trying but from what I am aware of here the process takes a while unless you personally know someone. And time is running out

Dorothy, well, shoot! I guess you have to trust your instincts, your MO and that Oncotype score over 30. It certainly should be easier to get a 2nd opinion. In addition to the opinions I gathered through my husband's connections, my MO consulted with two of her colleagues before meeting with me because my score of 21 was in that darn grey area. I had in my head that if my score had been 25 or above I would have done chemo even with the high ER%, 21 made me waffle a bit. My MO said that was also her feeling (this was after I made my decision) that 25 would have been more a definitive score for her, but the choice would have been up to me. She said some people are willing to do chemo even for a 1% benefit (that definitely was not me). Not trying to sway you in any way whatsoever, just musing about my experience.

Thinking of you tomorrow, createdonpurpose!

Created, In your pocket tomorrow!!!

HUGS!

Created, I'm in your pocket tomorrow too! Hope you have a big pocket

Dorothy, I'm sorry you need chemo, but glad that your MO was not wishy-washy about it. I must have missed the post where you told what your risk reduction would be with chemo. After it's over you will be forever glad you did it, at least that's how I think I will feel. When did you finish rads? My RO brought up radiation recall but he did not specify an amount of time after which it would be okay. Can you tell me what you learned about that? Maybe I'm far enough out from rads that I won't have to worry (finished April 4). Thanks, and good luck! Are you going to get a port? I think I want one.

Surgery tomorrow! I've been so busy with a houseful of family visiting that I've been more focused on dishes and laundry than surgery tomorrow!

My FMLA Paperwork came back with 3 weeks off work. Did anyone else take that much time off?

Looking forward to moving forward!

Thanks Peggy. It's beautiful in Spokane tight now!

tsoebbin and created, I will keep you in my prayers for surgery!! Dorothy, sorry you need chemo. I didn't have to with score of 14, but I would have with a higher score, anything to be sure I did all I could. I still feel worried ,even with stage 1, grade 1 idc with high er and pr. I think I have read too many discussion boards where people with cancer just like mine, had recurrences in the same breast and even metastasis even with clear nodes and margins. It's all a crap shoot and none of us will ever know. Do all you can to fight this sucky cancer!!!!

Created and Tsoebbin, Wishing you a quick recovery, I'll be thinking of you tomorrow. You'll do great.

Dorothy, Sorry you were thrown for a loop with your oncotype and now have to decide on Chemo. Chemo is tough and loosing your hair is the pits, but chemo is doable, not as bad as you think thanks to all the anti-nausea drugs and your hair will grow back. I did chemo first because of grad, lymph node involvement, and wait on genetic testing. I had a complete response so in the end I was glad I did chemo first as I knew for sure it had worked. My hair was long enough to stop wearing a wig at 16 weeks PFC. It is normal now except still has a few chemo curls. Good Luck with your decision, MJS

My last rad is tomorrow and I was allowed to get rid of the green marker lines on the left side yesterday. I am looking forward to getting rid of the blue lines tomorrow so I can stop worrying about keeping them covered.

Had my appointment with the MO today. Anastrozole is her preferred drug and it didn't seem like a fight worth having so I said I would try it but am on record as saying I would try letrozole before going to exemestane.

The neighborhood pharmacy has been ordering in generics of my choice for two of my drugs for years now with no problem. The teva brand anastrozole is backordered and the only other generic their wholeseller can get is Accord so that's what my husband brought home. After reading some of the comments in the forums, I am not amused. I'll try it but will also call the walmart and other pharmacies to see what they have and if I hit pay dirt, I'll have the script transferred.

Arimidex is not a first tier drug in my insurance's formulary so it would be $563 for 30 pills vs $343 for femara. The Northwest pharmacy in Canada has brandname from AstraZeneca for $65 and hubby said we can pay that every month so if I see the SE that the others in the forum did I'll request another script to send off. The SE everyone is complaining about in addition to the usual ones are severe mood swings and depression that they did not see on other generics.

MO dutifully asks me every time I see her if I am still using vagifem. My answer is the same. Today, I acknowledged the higher blood estradiol levels that has all the MOs on edge but also pointed out that it was done in women using 25 mcg suppositories and not the 10 mcg that are available in this country. I brought up the current Sloan Kettering clinical study that is in progress and preliminary data that has made them comfortable to use in their BC patients. She acknowledged that and pointed out that I was bilateral. I acknowledged what she was saying and pointed out that I have severe urogenital symptoms and if I had to go back to peeing every 5 min, peeing blood and constantly having labia tears with bleeding, she may as well kill me now. She thought that was fair and in view of the quality of life issues and my being aware of the potential risk, she is OK with it. She appears to be focused on reducing as many SE as possible to keep quality of life as high as possible considering the BC and the drugs we need to take for it. She rather have minor concessions that will keep women on the drugs than have them feeling so miserable that they stop taking them.

She is aware that I have been dealing with female pattern baldness for years and don't really have the hair to lose at this point so she wants to know right away if it starts coming out in buckets. So that's about it for now.