Starting Chemo March 2015

SpecialK

I think it important also to note that plastic surgeons and oncologists are not pain specialists - that is one reason they are reluctant to prescribe beyond what they see as the "normal" time period for surgical or chemo-related pain. If you have pain that continues beyond what is usual, these docs are often out of their depth on the best way to handle the situation. Pain specialists may be able to put together different drugs, or a different drug combo, or even the name brand of a drug - not the generic - as each individual drug has different delivery methods and may actually work differently. As Italy suggested in a previous post - even your primary care doc may be a better choice for ongoing pain issues, they actually may see more of it and may have better ideas, or be more amenable, to continuing to prescribe since they see patients with chronic pain more often than plastic surgeons or oncologists. Needing a written prescription is based on new law (2014) categorizing some pain meds as Schedule II by the DEA, and also includes the requirement that no prescription can be for more than a 30 day supply, and cannot include refills. Unfortunately, most of the pain meds commonly prescribed by plastic surgeons for post-surgical pain, and by oncologists for chemo related pain, fall into the class of Schedule II drugs.

Jackbirdie

Yes, sorry, I did mean Amber. Thanks PB.

And thanks Special, for the link.

I got a letter/email back this morning directly from LGFB. It was mostly boilerplate from a press release that was included in yesterday's NY Daily Times article. Hiding behind the FDAs apron springs mostly. I wrote them back again, telling them they have a moral, if not legal obligation to check these assertions further, and again referred them to the Skindeep database. It's so disheartening when the ones supposed to be "for" you are, in fact, against you.

Jackbirdie

NinjaMary- I'm so sorry about the SEs and so much fatigue. I'm glad you posted so I can send some more very positive thoughts your way. The end is near, though I'm guessing each day is longer and longer. Thinking of you and sending a hug. You have been so strong for so long.

Trvler

Opinions please. My MO (the one who is getting fired and likely had a pretty good idea of it since I saw another MO in HER group late in the chemo) had sent me an email asking me to meet with the BS to discuss the node dissection. I have decided not to do it. I start rads with another facility and doctor next week. At the end of my last appointment with her, she asked me to sign a permission thing for having my path retested which I signed.

So now she is emailing me asking me what I am doing about my follow up care. Do I owe her any more than this:

Dear MO,

Given our disagreement about my care and treatment plan (and Dr. X's) , I think it is better if I pursue my treatment at another facility.

Thank you for your help.

(She also asked me WHERE I am getting treatment, which I fully believe is none of her business? )

Jackbirdie

Allison- I think it is courteous of you to let her know you are pursuing care elsewhere.

I agree you don't "owe" her any info, including where you intend to get care in the future. I wouldn't say that, I would just write what you wrote above and remain silent on the rest.

She might want to know so she can forward the retested path, but you can get that yourself.

So sorry you are going through all of this, but glad you found someone you can build a relationship with. That's important.

IndyGal35

None of her business, Allison. You released yourself from their care and notified them. I don't think you need to do anything else. A screenshot of your email in the chart is all you owe them in my opinion.

PS - I would follow up and get a final path report so you can give it to your new doc. You should be able to get it at medical records if you can't get it through an online chart

SpecialK

trvler - if I were in your place I would replace "better" with "prefer" because it removes the judgement regarding the choice of treatment itself - which nobody can know for sure is better or not, and more clearly reflects your feelings of being unable to work with them for more personal reasons. You would have left that practice even if your second opinion had been in concurrence, right? She may be asking the where question so she can forward your records if you are choosing not to remain with their practice, however you can accomplish the same goal by filling out the records request with the new MO/RO and removing her from the equation completely. In reality, you don't even owe her an answer at all - you can just walk.

pboi

Ninjamary...hang in there, you're so close to being finished. I had a lot of fatigue at this point too, rest as much as you are able to. Not trying to scare you but my fatigue did worsen as rads finished, then I started to peel. But 2 weeks after rads my skin was healing nicely and the fatigue started to fade...there is a light at the end of this tunnel! Hugs!

Allison...I had 25 rad treatments, 5 a week over 5 weeks. This is the first I recall seeing someone do 4 a week for 3 weeks. Did I miss this in your post or did you ask why yours are timed this way?

PB

Trvler

Yes, absolutely would have left regardless of whether or not the second opinion agreed. It literally was an as I was walking out her door, I mentioned the NOLA BS saying the doctors here may recommend taking out further nodes. I wish I hadn't. I can't help but wonder if she would have even discussed it with the BS there since she never mentioned it throughout the appointment until I did.

ALL records including path are already at new facility. I saw this coming for a long time so I did it simultaneously. My only regret is that I said ok when she asked if they could run my path again. I should have said no. But she caught me off guard and they had the form in their hot little hands as I was leaving ready for me to sign. No big deal.

K: Thanks for the suggestion on the wording. I don't mean to sound mean or anything. I just want it to be done. I KNOW she will respond asking me where I am going…and I promise it is not so she can forward records.

Just got back from my rads planning session. They are so much nicer at this new place and they remember who you are when you come in. It is a smaller facility and a nonprofit but it is well regarded. The OTHER facility spends a great deal of the $$ on advertising as any local resident can tell you because it's in your face ALL the time.

SpecialK

trvler - I don't think you sound mean at all, just matter of fact. All you need is that one sentence. None of her business where you are going, and you are not obliged to tell her. I changed PS in May of this year. I had been through 13 surgeries with the original, but in the last surgery with him in Nov 2014 for fat grafting he had hired a new biller who can't seem to successfully bill my insurance for his professional fee. He made it clear that he would not book further surgery (I have no implant on the left - and haven't since May of 2014 - I kind of need to get this resolved!) until he got paid, which I understand. Nobody works for free. Both the hospital and anesthesia have been paid - were within two weeks so I know insurance is not denying the claim, and every procedure I have had is pre-authorized. My insurance company doesn't play that game of granting the auth and then not paying. They will deny the auth from the outset. The biller's software is not connecting with my insurance company, so they literally have no pending claim. It looks to them like I had surgery in a hospital with some anesthesia, but no surgeon - ridiculous! I brought the instructions for manually billing with the address and phone number to the PS and told him what his biller needed to do to process the claim so we could book the next surgery. So, in essence I was doing her job. Nothing...crickets. So, I made an appointment with another PS. She needed all the op reports so I went around to every hospital I have had surgery in around the Tampa Bay area - and bypassed his office completely. He still has no idea that he has been fired, and I don't really feel compelled to tell him. I am sure he thinks I have just given up, even though when I last saw him I had a gaping hole in my skin that was having to be dressed twice a day. I had the same surgery in May of 2015 with the new PS that I did with him last Nov and she was paid in less than two weeks. So... fire your old MO and don't look back.

Trvler

Oh, gosh, K. That's awful. I am kind of laughing at you doing her job, too. You could probably do surgery, too! I guess if he wants to get paid badly enough, he will figure it out. Didn't you say you were having your surgery in Dec?

Trvler

PB: She does it that way because apparently that's when the worst of the skin affects happened and by doing it that way, it eased them and made no difference in the outcome.

Jackbirdie

Allison - I believe Special could do about anything!

Thanks to her gentle direction, I got hooked up with Breast Cancer Action. I think everybody knows this. What is new is I just got off the phone with them. They asked permission to use my letter, my photo, my name in both an email update to 40,000 people on their mailing list, and they are creating a photo meme (shareable) for their FB page, all for release next week. I agreed to do this. Because I don't have a husband or children or parents to embarrass, or work where I would like anonymity anymore, I feel I'm in a position to allow some invasion of my privacy on behalf of this cause. I'm doing it for myself, but for others too. The main thrust of my complaint is pink washing, specifically, the donating and gifting carcinogenic, and endocrine and hormone disrupting products to cancer patients through the Look Good Feel Better program. I want them to stop doing that.

The ACS and Personal Care Products Council (the comsmetics industry) has been coming under fire for this. They've said some really stupid things in their defense, but I read today a comment that the program is so helpful, the benefit outweighs the risk. WTF?

Italychick

Regarding pain management with tissue expanders/mastectomy, or anything (sorry, still mad about how ignorant doctors are), I would think that any plastic surgeon or breast surgeon or MO or whoever should be anticipating that a patient will have pain, and be pre-emptive instead of waiting until a patient is in distress. After all, it isn't their first rodeo with tissue expanders, etc., and they should know that a patient going through the expansion or cancer process is going to have pain.

But wait, that would mean they need to look at us as a whole person instead of a pair of boobs, or some cancerous lymph nodes or whatever.

Fecking idiots!

BBwithBC45

Way to go, Katy!

Trvler

I didn't find LGFB to be that helpful. I just had some annoying lady next to me going on an on about her problems. (We all have cancer, lady).

Good for you, Katy. I admire you for taking it on. BTW, I was at my new rads facility and they had those LGFB things posted on their wall. I told the nurse about it. She was nice.

Jackbirdie

this is this week's quote meme. Remember all those bald pics I posted Allison? Coming in handy now haha.

Carrie37

I am way behind in reading posts but wanted to share some great news: I received the traveling bracelet in the mail today!!! Thank you Lee! I will wear it proudly and carry you all with me. Especially when I start back at work next week. 😕 I believe it heads international after me.

Jackbirdie

Yay! Carrie that is awesome you got it. I'm dying for a closeup pic.

It will go to Avmom in Canada next.

After that:

Arlene (Greenae)

Sue

KSusan

Sharon (Australia) she wanted to be last so she can bring it with her personally when she comes

DavisD

ninjamary-I understand where you are...that last week was unbearable but I'm almost three weeks post rads and the skin has almost gotten back to normal. The fatigue is lingering but pb is right, there is light! Hang in there

SpecialK

trvler - I doubt that he knows he hasn't been paid yet - but maybe he does, and he figures that is why I haven't been around. I'm sure as hell not paying him! Then again, maybe he figures he owes me a freebie after all the issues I have had with the surgeries he has performed. Who knows? I don't regard it as awful though, don't worry. I try not to waste my time being upset about things that have happened - or that I can't change, I just learn and adapt. That is what jackbirdie is doing - channeling her energy that stemmed from something that made her upset and using it to effect change - it is good for her, and good for the improvement for all that she is working toward. Yes, I am having surgery in December - having an expander placed on the left side. This will be my third one - one at the time of BMX, which was removed after three surgeries to save it so I could move on to chemo. It was replaced 6 weeks after chemo ended, while I was still on Herceptin only. I expanded very slowly and exchanged with no issues, and things were fine for two years. I had a repair done 18 months ago to replace my allograft slings because they were perforating. My skin tore open in the same place where I had necrosis problems after the original BMX surgery that caused the loss of the first expander. I had skin repair surgery in March, another in April, with a swap to a smaller implant to see if it would help the skin stay closed (it didn't), and finally in May the left implant had to be removed. I have had two skin repair/fat graft surgeries since then, and am now ready for a new expander. This is my last shot at this so I hope it works. Lol! I wish I could do the surgery myself, maybe I need to start watching more youtube videos!

jackbirdie - yay for you! Glad to have introduced you to BCA! Barbara Brenner, the former executive director of Breast Cancer Action, appeared in the movie Pink Ribbons, Inc. So you saw that your LGFB makeup was crap, saw the movie, asked BCA to help you with a screening (correct?), and now you are working with them to cause a cease and desist on the crap makeup in the LGFB kits, I feel happy about how that all worked out in a kind of circular pattern.

IndyGal35

I remember you telling us about that lady at your LGBF class, Allison! Ha! I ended up not going to one, because I was afraid I'd get stuck by a Debbie Downer in the throes of chemo. The fact that it seems so long ago is kind of reassuring.

So glad the bracelet has arrived at its next stop on the Midwest tour!

I rang out from rads this afternoon! She said that I may get redder and peel over the next two weeks but that my skin should be getting better in the next month. I won't know what to do with all of my "free" time now! I *only* have 5 appts left this month. You know you've been through hell and back when 5 appointments in 24 days feels like a break

Carrie37

Katy, I literally laughed out loud when I read your comment about asking my MO about cosmetics. My MO never even talked to me about what I eat. She only asked if I ate. I could have eaten cupcakes through chemo and she would have never known. I can't even imagine asking her about my eyeliner or facial lotion.

All the talk about firing MO's, PS's makes me sad for us. Although I find it interesting because I'm pretty sure if I stopped treatment right now the only person (other than family) who would notice would be my physical therapist. Today at my FIFTH fill my PS asked me if I was doing better and ready for my drains to come out. Ummm, I am done with those and have been here five times since. Makes me sad. I know I am but a number to them. My MO does remember me. I do not know that she'll bug me if I decide to not to hormone treatment.

Jackbirdie

Lee- CONGRATULATIONS on finishing rads! 🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉 Doing the happy dance for you.

Special- that's pretty much how it happened, except the part about you sharing, gently, the skindeep database with me. You also reminded me that the skin is our largest organ.

One day I was looking for a replacement sunscreen. I decided to look up what I had been using. It was a Neutrgena product. I've always liked Neutrogena. It always seemed like a nice clean product and company. I was shocked to find it was rated the worst- THE WORST of 2015. The shock to my perception was massive. For some reason, at that moment, sitting at home feeling sick from chemo, I thought of that bag of cosmetics and dumped it out on my bed and looked every single one up. Ended up mad and in tears. The rest is as you stated.

SpecialK

jackbirdie - excellent! I am watching your posts as events develop, I am super proud of you!

In defense of all of my docs - they have all been great. I am sorry for those who have had less than stellar care along this road. Very not fair. I left my PS because of the insurance billing stuff, but he has been a caring doc, who uses no auxiliary staff other than administrative. He does all fills himself, and is totally hands on, always knew what was up. MO/BS/old PS are all huggers and some of the most dedicated and forward thinking physicians I have encountered - and I had a boatload of medical intervention prior to breast cancer. New PS is not warm and fuzzy, but honestly, I don't need that anymore - I need her perfectionism, and she has that in spades - so it is all good.

ksusan

BRCA1, Breast Cancer Gene Cannot be Patented, High Court Finds

http://www.huffingtonpost.com.au/2015/10/07/high-c...

Jackbirdie

Good for Australia! They better not be trying that chit here

SpecialK

jackbirdie - Myriad already did that here - there were the only BRCA game in town until the U.S. Supreme Court very recently ruled in the same way as the Australian court did.

https://en.wikipedia.org/wiki/Ass%27n_for_Molecula...,_Inc.

Jackbirdie

Fucktards.

SpecialK

The flip side is that Myriad helped bring genetic testing for breast and ovarian cancer to the forefront, but unfortunately they controlled the market and drive the cost for that testing up. Now that the SCOTUS has ruled that they can't patent human genetic material there are more labs and reduced costs. So, they get a simultaneous yay and boo.