DIEP 2014
Comments
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J1971- My oncologist also sort of steered me away from taking Tamoxifen for prevention of contralateral breast cancer after my mastectomy for DCIS. He would have given it to me if I wanted to take it but felt that it was really kind of a washout as far as side effects vs. effectiveness. One study that he gave me to read seemed to say that it prevented a contralateral event in 3 out of 100 women (with DCIS, not invasive cancer) with no ultimate survival benefit. I am still mulling it over but am leaning towards skipping it.
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I decided against Tamoxifen and explained why to oncologist. Then asked him if I was his mother what would he recommend. He agreed with me. That's been my standard in this process. So far, the mom question has brought a sobering look and thoughtful response from medical personnel.
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Not judging anybody's decision, we all should respect each other. In my case, my MO said an anti-hormonal was the most important thing I could do to keep the FBC from returning. I only get hot flashes from Tami, which are under control with gabapentin, which I was already taking for chronic pain. Everybody is different, there are many things to consider in making the decision. Teacher, I like your question. When I was considerings rads because I was in a gray area, the RO volunteered that if it was her relative she would urge her to have rads. That was a powerful statement to me, even though I know it is her job to do rads.
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I've made the decision to stop Femara. The SEs are unbearable and too numerous (and some too intimate) to list and DH agrees that quality of life is more important right now. So I'm all about the boobs! PT is going really well - I can actually pinch the skin at belly button height now! Still too hard below that, but we're getting there
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Jeannie, you are so right about everyone being different. I got the feeling that if I had any kind of invasive cancer or if I had a lumpectomy + rads, my MO would have been much more encouraging about the tami. He did say, which I thought was interesting, that a better option might be to take an AI once I had been through menopause. I'm not sure why- more effective, or fewer side effects? I should find out more about that- but I'm 41 so it will probably be a few years before it becomes relevant.
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The anti estrogen's are a hot topic on a lot of the boards, and also among a small group of women I know personally who have had BC. Some choose to take, and do fine. Other's are so miserable on it they choose to go off, and take their chances. I was talking to a stage 4 BC patient last week, and she said she kind of enjoyed her chemo day?! Her husband would take the day off to take her. They told me their whole routine, right down to the huge meal at Cracker Barrel on the way home because she would sleep the next 24 hours,(in her recliner!) and then she would wake up raring to go!!! I find this so interesting since so many women are down for the count for days after chemo. Everybody reacts to treatments differently.
Lahela, your tummy is so tight you can't even pinch the skin? Girl!!! No wonder you have been so miserable. I am glad the PT is helping, and don't feel badly about the Femera. It's your choice, your body. You have done everything you can to get rid of the cancer. If it was doable, you did it!!!!!
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the whole cancer treatment thing is a crapshoot. For every study that shows this helps, or that helps, there are just as many that refute it. Makes it difficult for a cancer patient to choose. We all just have to do as much research as we can, talk to people we trust and go with our guts. Most importantly, we have to support and hold up our sisters no matter their choices! We're all in this together!
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....re: the hormone/decision/individual/support conversation.....
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Florida was great! Loved the warm weather and the beach, but it's back to reality now. I have a lot of catching up to do on the board.
I know a lot of people in our country have a hard time with medical debt, so I don't want to complain, but I was wondering what some of you do to pay off your surgery debt. I have deductibles from last year and this year that total $6,500 and the Cleveland Clinic doesn't set up payment plans. They have some type of credit through US Bank that charges interest. I guess if that's my only option, I'll have to live with it. Wondering what the rest of you do who can't afford to pay the full amount, and if anyone knows of any other options for cancer patients specifically. Maybe an organization that helps you set up interest free payments? Is that too much to ask? Lol!
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Regarding the hormonal therapy conversation, I have been really struck by how individual every case of bc is. I have felt fortunate that my MO and breast surgeons looked at my whole situation - all the findings in my biopsies, my personal health and family history, and took my unique individual situation into account when they gave me their recommendations, and took the time to explain it all. I imagine that these therapies are no different - that the Drs (and we patients) need to understand our individual circumstances when engaging in one form of treatment or another, and that each patient really is unique in their needs.
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Thank you friend from Mobile! I will pray for you next week as you head to NOLA - -yes, Dr. Fix is my PS and he did my BMX - - I am 90% sure I am doing the DIEP because I fear implants won't work because of my radiation. I do need to research more because I didn't realize there was a "stage 2" - - my doc has not mentioned that! Thank you again so much for your information and words.
Godspeed next week!
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jmb5- Welcome home, wish the weather was nicer here for you but it will be soon. Glad you could go and have some much deserved fun. Regarding the Cleveland Clinic- I have been making payments to them for a year. They have never given me any problems in doing so. I have never asked if it was okay, I get a monthly bill and send a payment. They have never turned me over to collections or even called me. I hope I can continue to do so. Wonder how many people don't even try to pay their bill or make a payment ever? I am sure there are many that don't or cant, seems silly to go after someone like us.
Regarding tami and AIs, I have gotten some flack on the boards for my choice to not take it. I gave up my ovaries and am giving up my breasts, that's enough. I had invasive cancer 2 mm. not cm but millimeters. Some have accused me of being drastic in doing the ooph and DIEP and some give flack about the tami. I feel good and confident with my choices that is all that matters. Dyvgirl- your post said it best, wish I could Like it!
For those healing this week, hope you are resting and feeling good. I continue to be amazed by all of you.
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lemon, we were told to not make payments and let it go to their "in house" collection agency, which does not affect our credit. That's what we did a few years ago when I had my first treatment, and everything worked out fine. We made interest free payments to the credit agency. Well, now there's a different credit agency and they called today and were threatening. I told them what we did in the past and they said our only option was to pay it all or contact the clinic and set up the credit plan with them through the bank, which has interest. So far about half of the $6500 has been sent to the in house collection agency. Maybe we could start paying the rest the way you are. It's so frustrating. Had I known they didn't do it that way anymore, we would have made payments right away. We always pay our bills. I was in tears when I talked to the idiot this morning. When I told him I couldn't pay the full amount, he said, "So should I put you down for refusal to pay?" I was ticked.
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Hi everyone, interesting to read experiences with the anti hormonal meds. I believe I will be getting a recommendation to take these and my gut feeling is no. I've already lost one breast to low grade DCIS and They are unsure if there's even anything to worry about in my remaining breast. I'm now four weeks out from my DIEP and still looks like a hard pancake now with a slight wrinkling appearance underneath. I'm hoping I will have a more natural looking breast after phase II? My plastic surgeon is rather vague when he talks about the final result.
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jmb - I have a monthly payment plan set up with the health system where I was treated for my cancer and get all my healthcare. The surgeon is not part of this system. I asked ahead of time if they would let me do a payment plan and they said yes, but I didn't go into specifics. Well, when I went in for my post op visit they were asking me for money. Their idea of a payment plan was 2 payments. "Can't you just put it on a credit card?" They asked. Um no, I do have a credit card for medical expenses, but the interest is 26%! We ended up taking money out of our retirement to pay the bill.
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What terrible stories about financial nightmares! I'm so sorry--SO not fair.
In my experience, when a patient is paying a big hospital bill out of pocket, the hospital will sometimes reduce the bill if you write a letter to the administrator. They negotiate with insurance companies all the time, and will frequently negotiate with individuals if they ask the question.
Also, there are laws concerning collection agency tactics. I don't know about Ohio, jmb5, but I would Google it and refuse to be bullied.
Another thought is to write a letter to your hospital, let them know you're more than willing to work them on a sensible and fair payment plan. If they refuse to budge, let them know, in writing, that you intend to contact your congressman and the media. Breast cancer is a big old PINK DEAL these days, and some reporter would just love to sink their teeth into a hospital persecuting a breast cancer survivor who's doing her best to pay her bills. No hospital wants that kind of press.
Yeah. Dammit.
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Drive by here....
Jerseymom...you will have to post many more "posts" before the admin. of the picture site will let you in.....they are very protective of the women who are generous enough to share their personal experiences......just hang around here for awhile, and get comfortable.....
I am another who had very low-grade DCIS in both breasts.......MO told me he would not recommend my taking the Tamox/(or other one).......my gain from doing so would not be enough to offset the potential side effects......I'm okay with it now, but was really bothered by it for a while after my DIEP. Just goes to show that one-size doesn't fit all in BC treatment.........
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It's only been three weeks and I haven't heard from anyone about bills...yet. I was assured by hospital that I could have a payment plan, no interest. And insurance is still balking at paying for diagnostics that found the cancer. It took three months for bmx bills to begin to trickle in, so I figure I have until June for stage 1. Any questions and they can check my credit rating and see that I'm good for it, eventually. I like idea of writing to hospital and helping people see the PINK!
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After making some phone calls this morning, it looks like we're going to have 2 bills to pay. One to the Cleveland Clinic, and one to their collection agency. I am so upset that we didn't pay the clinic earlier. We were just following the advice and doing what we did when I was first diagnosed a few years ago. We let it go to their "in house" collection agency, set up an interest free payment plan, and paid it off. They don't do it the same way anymore. So what they recommend is getting a MAP loan and paying 7% interest. Both the bill with the collection agency and the remaining bill with the clinic can be put on it. Before we do that, my husband is going to make payments each month to both places and see what happens. I think the clinic will be okay, but the collection agency will probably get nasty. We looked on their website and their set up is something else. It's all based on percentages, so the more money they recover, the higher the fee the Cleveland Clinic has to pay them. No wonder they threaten you when they call. I am feeling really down about this today. I can't change it, so I guess I need to suck it up and just do what we have to do. I got my stage 2 scheduled while we were in Florida last week, and I should be excited about that, but I'm not. I am dreading the thought of another surgery. Sorry for the downer post. I know you are all going through so much too.
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Sorry to hear that some of you are dealing with difficult insurance and money collectors - it is just so not something you need on top of all this!
I put my big girl pants on and made an appointment with a new MO
I hope the old one doesn't phone to ask why... I don't think it would be appropriate for me to say "because you're a disrespectful b!tch". 
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jmb.....I don't think there is any need for an "apology" for your recent posts. Finance is the reality of ANY medical facility, but surely it can be handled with dignity! Financial stress is sadly a big part of the picture for many woman, and has a huge relevance to how you heal and "recover"....physically and emotionally. I hope somehow it gets sorted out in a more humane way....do you feel comfortable in contacting your hospital/physicians and educating them on how the collection agency's "tactics" are affecting you, especially given your past history of financial responsibility? I am so sorry this added "weight" is on you and your family. Of course it affects your emotions regarding another surgery....and I would bring that into the discussion. Is there a patient advocacy person you can enlist to help you? Again....you have a track record of covering your bills.....surely that has to factor into this.
lahela......good for you. IMHO....if your previous onc does contact you, I think it would be MOST appropriate to tell her you found her unsupportive and disrespectful. Might just help her "next" patient not have such a crappy experience.
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Preop 3 pm appt. with DR Sullivan at 3:30. Sounds like we are at different centres but will be thinking of you. Dk
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hi
I should be out of the hospital by 3:30 all going well. Good luck to you. DK
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jmb, the collection agency bought your debt for less than it originally was, and they will try any scare tactic to get you to pay. But, by law, if you ask them not to contact you again by phone, they can't. Tell them that you are aware of the debt, and that you would be happy to work with them if they can lower the amount they are asking for then you might talk to them.
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So sorry to hear of monetary difficulties.....the surgery and treatments are already so much!
Tomorrow is 6 weeks! I really pushed myself yesterday...so today I am resting to catch back up! hehe
Hubby and I are celebrating this weekend the end of my 6 weeks-- a masquerade ball!! I have had to carefully pick the dress (gentle on hips due to incision) and ability to wear a full bra! So looking forward to a celebration!
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hi ladies. I've been reading all your posts and you all are an inspiration. I met with my dr today and will be having diep surgery in September. I have learned a lot from you all. My dr is very nice and explained the whole process in great detail.
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So excited after seeing cardiologist today because I had a glowing report, best in two years! He and his PA were so surprised about my progress and I don't have to have a follow-up visit for six months, was every 3, so I feel like I've graduated! He'd last seen me just before bmx and wanted to know all about DIEP. I asked him if next time he does any heart procedure if he'd mess up my new breasts. He said, "Absolutely not!" What a relief!
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hi,
Tks everyone for your words of encouragement. 1week post-op, back home, no pain meds and feeling great. It's a dream come true after a year with a open wound. I'm not jumping yet and still walk like somebody hit me in my belly. Lol! The PS even gave me the ok to go to Punta Cana on a grad trip with my son at the end of the month. Didn't book yet, want to wait until the week before to be safe. 👙🌴
I'm on the oder side now and want to wish all the best to those who are going to join us by the end of April. Good luck girls!
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Etoile -- glad to hear you are home and doing well. I went to Punta Cana about 7 or 8 weeks after surgery. My friends helped me with lifting luggage and I think the week of relaxing in the warm weather (and away from all the snow) was great for my recovery. I hope you get to go and enjoy!
Teacher -- great news on the cardiologist visit.
J1971 -- enjoy the ball -- sounds like fun.
Welcome to all the new ladies. The 2013 DIEP thread was a goldmine for me in terms of understanding the process and the potential complications. I felt like I was very well prepared going into surgery. I'd like to ensure I pay it forward, so please ensure you ask any questions you have.
Ridley
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I had my last drain removed today. It wasn't ready but it was coming out and I have developed an infection there and near my belly button. I now have to wear a binder and take antibiotics for a week. I go back next Wednesday unless it get worse.
Things had been going so well recovery wise.
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