June 2014 Surgery Sisters
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Hello June sisters, I haven't been on in awhile and just wanted to check in. I hope this finds everyone healing and handling treatment well. I've been on my tamoxifen for a couple of weeks now. Getting the nights sweats and a little bit of joint aches, nothing I can't handle, more annoying then anything. I got my last fill today. The NP took me up to 475ccs. I thought we'd be going to 450ccs but she thought I needed to be at 475ccs and that the integrity of my skin looked good. So, I went for it. It will be interesting to talk to my PS at my pre op appointment and I will have all my questions ready. I'm just trying to trust in the process and not obsess to much. Sure glad that the fills are over and I can get back to a bit of "normal" life again. I won't be able to do my exchange until December....it's going to be a long few months with these hard coconuts, lol!
Hugs all around,
Joy
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Ojoy,
I have appt with MO on tuesday to talk about tamoxifen. not sure I want to take it. I tried it 5 years ago and didnt like how it was making me feel. BS told me had I stayed on it I might not have had the DCIS. Real crappy of him to lay that guilt trip on me ... like it was my fault I ended up with DCIS. He says my risk of recurrence in same or other is as high as 17%. So the benefit of taking the drug would cut risk down to about 8ish. I'm thinking that if I am being closely followed anyways, they will catch anything earlier rather than later anyways. I dont want the menopausal feelings yet. Am I crazy for not wanting to take something that is going to make me feel yucky?
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Trish, I'm with you. You really have to weigh the pros and cons. I discussed this at length with my oncologist and took her recommendation NOT to take it. While I'm thrilled it's available to those who were diagnosed with an invasive cancer and truly need it, those of us whose cancer has not broken out of its original ducts or lobules can often avoid it. I was not opposed to taking anything that would keep the monster at bay so had no preconceived ideas.
The oncologist said in my case (DCIS on one side, LCIS on the other) there was zero chance of developing either of those two types of breast cancer again because I'd chosen bilateral mastectomy. DCIS grows in ducts and LCIS grows in lobules. Since I don't have either of those anymore, those two cancer types can't recur. BUT since a few stray breast cells can remain after mastectomy, it's possible to develop one of the other kinds of breast cancer in those cells. However, the chance is only 1%-2%.
Tamoxifen can bring recurrence rates down as much as 50%...but 50% of your original chance of recurrence in my case means a tiny fraction. The oncologist said the chance of developing leukemia from Tamoxifen is small, about 5%, but that means there is a greater chance it could hurt me than help me.
I think it's terrible that your doctor is blaming you for a recurrence. While it is true that LCIS is more worrisome than DCIS because it is a marker for an increased chance of breast cancer in the other breast, it is by no means a sure thing. There are lots of women out there who had LCIS in one breast, had a lumpectomy, and are still fine years later. You cannot blame yourself. It's not your fault. Come here and let me give you a hug.
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Trish- I don't blame you for not wanting to take it, and it's not your fault either! I just feel that what ever the percent is to lesson the chance of reoccurrence in addition to my past history of cancer it's worth it. A big deciding factor for me was the fact that my tumors were 95% ER/PR + so I really need to block that estrogen. Last week was my first week back to work and that night I broke out in a rash and I took a Benadryl. The next day, after my walk, I broke out again and it got worse and took another Benadryl. Benadryl cancels out the Tamofine so I called my MO. I think it's the Tamofine even though it's a rare side effect. It seems to come out after I do a cardio walk in the mornings. The NP of my MO said that in the 28years of working with women and this drug she has only seen 2 women get a rash from it. I told her that I might be her 3rd, lol. They stopped me for a week and the rash went away for the last 3 days. They think it is something that I'm using on my body even though I haven't changed lotion, shampoo, laundry soap, ect. Now they are going to have me start a 1/2 dose for a few days and if the rash returns send me to dermatology. If it doesn't return, they want me to take the full dose and see what happens. We'll shall see...... They have been talking about putting me on ovary suppression shots and AI's in December after the SOFT/TEXT clinical trial data is released at the San Antonio Breast Symposim the week of December 8th. It sounds like that is the route they want to take but wanted to wait to see the outcome of the clinic trial first, hence the Tamofine until then. Maybe I'm allergic to work, lol. Anyhow, it felt good to get back to work, even though part time, and to have some "normalcy". I was quickly reminded that I have a new normal. Here is a pic of my not so pretty rash.
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Ojoy that looks like it was uncomfortable! So, I had my appt this week with my MO. I love her. She gave me a big hug as soon as she walked in the door. She is so caring. Anyways, while I was waiting for her (usually it takes an hour to be seen), I was poking around on the Tamoxifen site here and happened upon a response by a stage IV lady. Her last post was in 2011 which makes me think that she is on the other side now. She said that we should be doing all we can to fight this thing. It really made me think hard about not trying the Tamoxifen again. I have LCIS, I have had DCIS. I chose to keep my left breast. My chances of getting cancer in the left breast could be as high as 17% with the LCIS and previous DCIS. I do not want cancer again. So when she started her spiel I was ready to listen. She wants me to try it for 6 weeks and come back and see her. I need to check the drug interactions on this since I take benadryl sometimes. Didnt realize. Hope you are enjoying work.
Sandra - thanks for the hug.
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Trish- I'm glad that you like your MO and you stumbled upon that post as it made you open to listening. I always look at any situation I'm in and say to myself , "it could have been worse". I feel as though I've caught some breaks in this BC fight as it wasn't in my nodes and by being aggressive with my surgery I didn't have do do radiation. So, taking the tamoxifen seemed to me as I caught a break. Luckily, I'm not having to do a 4 or more months of hard chemo like some women.
I have a friend who is a BC survivor (5yrs) and a nurse. When I was talking to her about the Tamoxofine she said that she had it on her night stand for a month before she finally took it. She was nervous about the side effects, ect. When she started taking it, she had none. She said, "I put myself through a month of worry, which is not good, for nothing." Everyone reacts different to these drugs. Remember if you do decide to take it, they have many things to help with the more common side effects....hot flashes, ect. If you do need to take an antihistamine, Claritin and Allerga are okay to take with Tamofine.
I start back up with mine today. Hoping that this rash was a fluke. I am still enjoying work but was hit with the realization yesterday (I've had low energy all week) that I cannot work more than 5-6 hours a day. I pulled a couple of long days in the last two weeks and it wiped me out. So, I'm scaling back my schedule. Trying to get used to my new normal.......it's been a challenge but my body lets me know when I've done too much. Hang in there girlfriend!!
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Smart girl, Ojoy! You are listening to your body and making the best of a crappy situation. It sure would be better if a buzzer would sound when we are making a decision that will come back to bite us later. That's why they say hindsight is 20/20. All we can do is educate ourselves and making the best decision we can with the info we have.
P.S. That rash looks awful. You must have been miserable!
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Hello all,
It's been awhile I hope everyone is doing well.
Ojoyjoy I hope the rash is gone and never to return.
Sandra are you still scheduled for Friday?
I just had a herceptin infusion and I'm feeling kinda queasy. But that's me, most do fine on it.
I also had my port removed last week. I never liked that thing and had it removed early. Not to scare anyone who will be getting one. Most are fine with them. And I was of course was happy I had it during my 6 hour chemo. But those are over.
Anyhow, I hope your all doing good. And getting back to some sort of normalcy.
Xoxox
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Marren, yes I'm on the surgery schedule for Friday. Nervous, even though this is #5.
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Sandra- It's never easy no matter how many times. And this better be your last!
Hugs to you:)
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Love the avatar Sandra!
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Sandra, I hope your surgery goes very well. You've been through enough!
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good luck Sandra!
Shirley
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Sandra, keeping you in my thoughts. Hope your surgery goes well tomorrow!
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Today I went to the hospital to have a PICC line put in. I get one before every surgery and keep it as long as I'm on the antibiotic - 10 days minimum. Some of our June Surgery Sisters have had challenging infections, so they know what this is. For those who have no idea what this is, it's like a port in your chest or a central line in your neck. A special trained team does the procedure in a sterile environment and Lidocaine is involved. They use ultrasound to locate the right vein on the inside of your upper right arm. A line is fed through that vein up to your shoulder, across your chest, and down to your heart. It affords the medical team instant access in case they need it and the patient doesn't have to have anymore "sticks." After they bring in a portable xray machine to confirm it's in the right place, the end of the PICC line is sutured to your skin so it doesn't move and two lumens are connected. One is for blood draws and the other is for IV's. You can keep a PICC line in for a year or more but have to do saline flushes several times a day and get the dressings changed by a nurse who has been trained in all the procedures that keep the area perfectly sterile.
I got a PICC line after my first surgery when I was fighting the infection and all my veins refused to cooperate anymore. This is my 5th PICC. They had a tough time getting it in because of all the scar tissue in the vein they have to use. After an hour, he gave up and started over on the only other vein they can use...the "vein of last resort" is only used in 1% of the cases. Fortunately he had no problem even though the vein is more difficult to locate. The photos look scary, especially with all the blue sterile drapes and masks on everybody. Mike was there as official photographer and to peel me off the ceiling during the first hours when they kept hitting nerves. Yowie! Tomorrow is going to be easy since this is done already. I show up, get some Versed, and head off to the OR. If this surgery works, there will only be one more - for fat grafting on my chest.
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Holy Moly Sandra! You are one tough lady and such an inspiration. I'll be thinking of you tomorrow.
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You are in my thoughts and prayers Sandra and I'll be thinking of you tomorrow. Like ojoyjoy said...you are one tough lady and such an inspiration.
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Sandra, will definitely be thinking about you tomorrow! Please update us as soon as you are up to it!
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Just checking in on Sandra. Wow, an hour?! Yikes, you are one brave lady. I'm thinking about you and hoping everything goes well tomorrow.
Big hugs xo
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thinking about you Sandra, hope for an easy and fast recovery.
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SURGERY CANCELLED. Pre-op lab tests showed a problem with my thyroid. Surgeon says it's too dangerous for me to go under general anesthesia. Crap, crap, crap. Sure do wish his assistant had looked at those lab results yesterday before I had to get the PICC line. He called just as we were leaving for the hospital.
Pity Party, table for one...your table is ready.
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So sorry Sandra
How infuriating and frustrating for you! You have that pity party and make it a table for two as I'd like to join you for support. So what now? How long is the delay? Can you keep that damn line in or will they need to take it out? -
oh no, you've got to be kidding me. I'm so sorry. What now?
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Oh Sandra, I'm so sorry! How frustrating!
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I haven't checked in here in quite a while. I had DIEP Stage 2 surgery three weeks ago today. It all went even though I woke up with two drains. Ugh! But then, three days later, my mom died very suddenly. She was a breast cancer survivor of 22 years but I think what finally got her was stress, as she was the primary caregiver for her 96-year-old mother. Needless to say, I wasn't able to concentrate much on healing right away. But my PS really went out of his way to make sure that the drains were out before calling hours/funeral.
I wrote a blog post about my mom and if you're interested, you can read it here.
I hope all my other June surgery sisters are doing well!
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So sorry to hear about your mom, gila. I think I read details on another thread where you also lost a godchild around the same time. You are in my prayers, friend. I can only imagine what you're going through...
One love,
tp4ever
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Gila - I'm so sorry to hear about your mother and what you wrote on your blog is beautiful and so moving. You and your family are in my prayers.
Sandra - what a bummer about your surgery. Stay strong and keep up posted.
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Gila, just as I was wallowing in self pity, I read your post and realized I have nothing to complain about. Losing your mother is a horrible thing to go through. Mine has been gone 6 years and I still catch myself picking up the phone to call her. So, so, so sorry for you. As a 22 year survivor, she really beat the odds, which weren't so rosy back then. You got 22 more years with her. The timing was awful - just as you needed to focus on your recovery.
My surgeon called back to give me more info on why my surgery was cancelled. In the past three months, my thyroid has gone crazy. I've taken synthyroid for years and experienced highs and lows before ...but nothing like this. The TSH numbers should be no more than 3.0 and mine are 11.9. There is something called Thyroid Storm that occurs in situations like mine. 25% of patients die. I had the PICC line removed this afternoon. The doc says he'll put me back on the surgery schedule for 4 weeks from now. I see my endocrinologist Tuesday.
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So glad you got an explanation. Hopefully they can get your number back in a safe area. I will be praying for you.
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Sandra, glad they explained it to you, and it does sound like a good idea to wait. Still...not fun.
TP4ever - yes, my nine-month old goddaughter died three days after my mom. Her memorial service is tomorrow. That blog post will come next week.
Thank you all for your kind words.
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