January 2014 Surgery Sisters
Comments
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That was beautiful Eve. And, I did close my eyes. Thank you.
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I agree, Diane, Eve's message was ... just beautiful -- it made me tear up, too! Thanks Eve!!
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Eve,
Yes, even though we are spread out around the world, are varying ages, have had differing experiences, some of us are diagnosed with stage 0-4, some need chemo and radiation and some don't... We can all say we are brave, strong and courageous!! (not every minute, but when we need to be the most!!) it's amazing and I felt this when I first found this group a few months ago, people on the site are going through extremely difficult decisions, surgeries, procedures, treatments etc but take the time to reach out to a complete stranger and offer a piece of advice, a show of support and just a hear to listen to each other when we are scared, have a question or just need to yell!!!! What a truly amazing group of women on this site!! Thank you from the bottom of my heart for allowing me to be part of the sisterhood!!!! I truly feel connected and hope I can help others as they go through this, just like you've helped me!
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Laurie - Glad to hear you got back to sleep and feel better today. {hugs}
Summerwheat - It's understandable to fear the unknown. And chemo seems like such an insurmountable thing to tackle. In a way I was glad to do it first.... get the worst over with right away (in my mind). It probably won't be a picnic, but it is very doable. And your chemo cocktail is nicer to many people than the one I was on. Don't be afraid to ask your MO for meds, advice and tips to get you through. I promise you, for just about every side effect you could have, there is something to be done for it. {{hugs}}
Eve - I never thought to watch a video on mastectomy.... not sure if I want to. LOL Why don't you want to do hormonal therapy? Just curious.
bc101 - LOL Love the picture!!! I'm glad you got a referral for PT. I've seen my occupational therapist three times and she's helped me a lot. My PS is 3 hours away.... pain in the neck to go to the appointments, but I love my surgeons so it's a good tradeoff.
Claire - I had a yeast infection from the antibiotics I was on after surgery. Talk about adding insult to injury! I had surgery on Jan 3 and didn't have my first fill until 2/6. My PS didn't think my incisions were healed enough to put any stress on them until then. I've had 3 weekly fills since then.
mmtagirl - My OT hasn't been able to "fix" my cording, although she has helped me somewhat. She said mine is like piano wires that keep moving. I LOVED Outlander. Claire - I'm so bummed because I don't get the channel the series is going to be on.
Girlstrong - {{hugs}} I'm sorry about what seems like a setback. But... you are just doing what you have to do to get through the next treatment, which is rads. 2 years.... Yep. My diagnosis was Aug 1, 2013. I won't have my recon surgery until the end of 2014 and then will probably need several "tweaking" procedures in 2015. So still a long road for me, too. Hang tough!
Had our weekly trip to Dallas today. Saw my PS (who was finally very pleased with my incisions - all healed up) and got a fill. My previous two fills were 50 each, this one was 75. Wow can I tell a difference. All of the sudden I have FOOBS! LOL My TEs hold 500 but PS thinks we may stop at 400 because he doesn't want to "make me look ridiculous". I'm at 275 right now.
Saw the lymphedema specialist again and she worked on my cording. It's better, but still there. I can't see her next week because my PS appt is on Wed and she's not in the clinic then, so I'll make an appt to see her in two weeks if I'm still not better. She told me to keep stretching and to show hubby how to do some of the massage she does.
I have one kid with a sore throat and a hurt hand from softball and another that just threw up in the bathtub. Ugh. It never ends!!!!!!!!!!!
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Thank you, Eve, made me cry too. Beautiful.
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Michelle,
The reason I want to avoid taking an AI is I already have arthritis in my neck (with a pinched nerve) and back. The AI causes osteoporosis so more bone loss could be debilitating for me. I know I could take a biophosphate but I am really against taking one drug to counter act another's side effects. AI's also raise your blood pressure which I already take a pill for and have a bunch of other SE's. My chance of mets will only be reduced by 3% with an AI. I feel as if my quality of life will be seriously compromised if I take this drug. If my oncotype score came back higher and my dx had node involvement I would try it.
My BS agrees with me, but I will still see the MO for her opinion. I will also consult a nutritionist.
ttyl
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Wow...what a difference 250cc's makes! I have foobs now! It will be no e to go back to work with a B plus. My PS says one more fill to get to a full C cup, which is awesome. Really tight but so far no real pain.
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Mommyathome - nicely put! See what you started, Eve! Hey, others have helped me, so I"m happy to be able to help. I'm just paying it forward from others who have gone before me.... Just think, if we had to depend on only what the docs told us, we'd be sunk, lol! But seriously, it's nice to have the support. I consider this thread my homebase
So yesterday we got a total of 8 inches of snow. Hubby came home and plowed the driveway and by the time he was at the end, he could have done it all over again. Today it's 8 degrees. Looks like a winter wonderland. I'll have to go out and snap some pics for you all.
In yesterday's mail I received an inch thick packet from my clinic. They finally mailed back all the records I brought to them last December. I had to gather all my records and slides from 3 different clinics for the surgery I had done at my present clinic. I switched providers at the last minute. Something I will never regret. Long story..... but I'm putting all those papers away and I hope I never have to use them ever again. The only paperwork I keep close at hand is my final pathology report showing clean margins - along with the letter from my wonderful BS officially announcing to me that I'm cancer free.
Eve -- yep that's what you gotta do - gather all the info, look at all the stats, and weigh all the options. Let us know what your Onco score is. I was a 10 / 100. I'm just glad that I can take something and that I have no side effects - although I do have osteoporosis. I also have the beginning of osteoarthritis in my knee and who knows...probably my neck, too. So I'm careful to take my calcium and get in my exercise. Sometimes I wonder, gosh, is surgery and hormonal therapy alone really enough? Look at all the women doing chemo and rads and they're early stage... It's something I've wondered from the beginning. But everyone's cancer is different. All the tests I had in the beginning pointed to a "well behaved" tumor, meaning VERY slow growing. The Oncotype was the main determiner. It showed I have a low chance of recurrence, and due to being ER/PR+ chemo would be of no benefit. One of the tests they did after the BMX was a Ki-67 showing the tumor was a 0.5% - one of the lowest scores ever seen by my docs. So, I'm happy to keep taking my Aromasin. I'll take it as long as I don't have joint pain. That's my cutoff. But I figure I'm killing the chance of any other rogue cells from developing and not giving them a chance in hell...!!!
I was never given a percentage as to how much it decrease my risk of recurrence, so that would be an interesting question to ask my MO. And as you said, if it only helps by 3% - why do it? If they gave me those odds for doing chemo, I sure wouldn't do chemo. Altho...as my 1st BS argued - doing a proph mastectomy only reduces your risk of local recurrence by 1% (or was it 3%) Anyway, I later found out that's per year and a lifetime reduction is actually 15%. Enough of stats...
Well, better get on with my day - on to my stretches!
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Diane and Michelle -
Congrats on having foobs! Here's a fun song for you all - I have to get psyched up to do my exercizes...this is one song that gets me going:
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BC101...I thought the onco score was the reoccurrence chance. Mine was 8...so I thought 8 % chance of reoccurring. Was I mislead?
I also thought that I should do everything I could so I wouldn't come back....and when they told me I didn't need chemo it worried me. My MO said she had never seen anyone so disappointed they weren't having chemo! LOL
Laurie
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Yes, that's right. The Oncotype measures risk of distant recurrence. So my docs reason that if I have a low chance of recurrence at 10 out of 100 (or 7%), then it's probably okay to pass up chemo. There are two numbers on my test. 10 is the score, so they give that an average recurrence rate of 7%.
If your score was high, they would treat more aggressively. It's just a piece of the puzzle. They also take into consideration the tumor characteristics like hormone sensitivity and the fact that lobular cancer doesn't respond to chemo. So.... If you had a high Onco score, or an aggressive growing cancer they would attack the tumor with everything they got, including chemo. Make sense?
Your tumor's genetic make up is more relevant in determining treatment plan. We are fortunate today in that they know so much more about fighting cancer, rather than the slash and burn techniques that have been in place for centuries.
I should also add every doctor's approach to treatment is different depending on where you go. Some are more conservative and others are more progressive in their treatment. That's why it's so important to be educated, ask questions, and find a provider whose guidelines you are most comfortable with.
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Sorry....didn't mean for that to turn into a lecture!
Here's another cartoon for Foob Friday...
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hello all,
Just returned from my MO . Timely given the recent posts on oncotype. MO first put my data into the adjuvant database and came back with a 25% 10 year recurrence. 13% be fit from anti-estrogen therapy and addl 6% with chemo. We discussed oncotype testing and he recommended it for me. It was not done during my BMX because they found a positive node.
Standard of care would be chemo and hormone therapy but there is a lot of discussion now on whether it is of benefit for all patients if only 1-3 nodes are involved. We will do oncotype testing and if it is low risk 0-18 then he is recommending participation in a clinical trial. 50% get chemo and 50% only hormone therapy. If onco testing comes back higher then we will automatically go with chemo and not be part of the trial. If part of the trial I can't pick which protocol, however. Decent odds so I am going to give it a whirl. Testing should be back in about 10 days. Have any of you participated in a clinical trial?
BC101- love the cartoons. I am feeling like the melon snow woman today, lol!
Diane, glad your fill went well. Mine, too, and it is such a good feeling to have some semblance of cleavage again.
Claire, I have read all of the Outlander series and have it on my to do list while I am off work to retread the first book which is still my favorite. I have watched some of the Starz trailers. However, Jamie is much more sexy in my own mind :-)
Happy Friday everyone!
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Good luck with your oncotype mmtagirl - let us know how it goes. Never done a clinical trial, but sometimes I felt like I was a science experiment doing preoperative hormonal therapy, lol! Not many women out there do it in the U.S -- mostly in Europe or so I was told.
In just the past several months, they changed the guidelines on nodes for the Onco. It used to be only for women who were known to be node negative, but now they include positive nodes, up to 3, I think, for invasive cancer, which is awesome because it helps more women.
For those of you who are curious, here's a link on more info on the test....
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Good luck mmtagirl! I'll think good thoughts for you.
I can tell it's going to be a challenge sleeping tonight. These puppie-melons are barking already. Sooo glad it's Friday and I have until Monday for them to calm down.
Mary - thanks for the song, and the cartoon! I was thinking that mine look like a Barbie doll...that is, if she were left in the hot sun for too long and sort of got lumpy, LOL. I know they will look better when the rest of the hematoma is gone and I get the actual implants.
Michelle - I have 300 now (had 150 with BMX) and I'm a B+. My PS says I'll get 200 more on March 4 for a total of 500 to get to a C+, but I'm really tall, so it probably looks different on me.
After that, I get to get on the schedule for the exchange surgery...sometime in early April...Yay. Someone wanted to know how long to recover from that one. My PS said 1 week! Since he was spot on with his 6 weeks for BMX, I believe him. He just makes a small incision on the bottom outside (medial). I'll still have nipple reconstruction and tattooing after that, and have to get going with my AI's (Femara), but I'm feeling encouraged today.
Hugs to all of you!!
Diane.
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bc101- they include node positive post-menopausal women now (assuming they are ER/PR+ and HER2-) in the Oncotype testing. If you are pre-menopausal and node positive like me, unfortunately you don't fall into the criteria for testing.
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Hi guys,
My onco was 11. Distance reoccourance was 7%, Remember that lower number reflects tamox use for 5 years...which "they" have since changed the protocol for the 5 and reduced it to 2 or 3 years and then added aromatase inhibitors to the mix. Well I miss- stated my mets rate , it is 4% not 3%, and that is over 10 years.
So the weird thing is my stage is 1=size of the biggest tumor out of 6 of the little invasive bast*&rds. Having 6 tumors doesn't matter. My grade, 2, has to do with how fast the cells reproduce.
Now, the thing I took into consideration about taking hormonals, is the fact, confirmed by my BS...is....the % of women in the general public of developing BC is 12.3%. So I am at a lower rate of getting this crap back than the general population.
The thing is...we each have to know our particular BC. We are all different. My TX decision is gonna be way different from ...everyone else.
Eve
PS...forgot to add...I took into account LVI. Lymph and vascular involvement of which I had none...yeah!
My BS said we are looking at stem cells. Not free floating BC cells but the cells that were the precursors to the BC cells. And it took 8 to 10 years for the stem cells in my boob to finally show up as tumors.
I love all the technical stuff. I love the research...there is soooo much to know and understand.....
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Thank you Eve and bc for great info -- I cannot get enough of it! I am hoping that when my test results come in, my decision will be clearer and easier to make. Have a good weekend everyone.
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Mactinx- I am premenopausal with one positive node and oncotype dx was ordered today. So, I believe the thinking is changing, especially for grade 1 tumors like mine. I will let you all know when I get the test results back and learn more about the clinical trial, which of course, will only happen if risk probability is low.
Diane, we are on the same fill schedule. My next one is March 4 as well. I had my first fill on Thursday to 300. Took ibuprofen today and that has really helped. I am scheduled to go to 600 cc total which will still be much smaller than what I was before all this. I am not tall like you. I wish I was! I was a natural Dolly Parton before BC except I had to roll them up and stuff into a 34dd. Lol...not so attractive after 51 years of gravity! Good luck to you and we can compare notes.
Eve, completely agree with you and if I have learned on thing it is that EVERY BC is different.
Now to show how I think differently, I went to a high school basketball game tonight. My DH no sooner said be careful walking and I fell right on my as$! I had a cervical spinal fusion 2 years ago. Did I think about how my neck was? No. Did I feel for a broken bone? No. I gave myself a good feel up to make sure my expanders were in place! All is good. Just wishing I was living with you gals in Florida or California vs Michigan. Go away winter and bring on summer! (We don't have spring in Michigan. Lol)
Have a great weekend everyone !
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mmtagirl- Did your insurance pay for your oncotype test if you didn't meet the criteria? My MO and BS just said that it doesn't really matter what my Oncotype score was, if I had a tumor in my lymph node, which I did, I would need chemo.
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Macintx- my meeting with MO was this afternoon. I asked about insurance and he said he has not had any issues with it yet. So, I am assuming it will not be an issue but I will let you know if it is. Your onc and BS are correct that the current "standard of care" with lymph node involvement does today mean chemo.
I still have a greater than 50% chance of chemo. The only way I will not be receiving chemo is if I have a low oncotype score AND I am randomly part of the 50% in the clinical trial that is selected for anti estrogen therapy only.
You may want to ask about the clinical trial and see if you qualify, if interested, with your MO. For me, personally, the 6% advantage seemed worth the risk.
Good luck and keep me posted on what your plans are.
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Hi ladies. I met with my bs yesterday because on Tuesday this week during my appt with my ps she was concerned, as was I about the beginnings of an infection on my prophylactic breast. My BMx was jan 29. She cut away about 2 inches or do of skin and drained some fluid and re stitched my incision. It seemed to get redder in color and I felt more fluid building up so I called and she told me to see the bs yesterday. I had another 22cc aspirated... I had 42cc on feb 11. My bs said the skin that was cut away was called eschar. Are any of you familiar with this? She said it is skin that doesn't receive proper blood flow and dies which can cause an infection. When the ps was cleaning it up she noticed there was also some alloderm. Should I be concerned about any of this? I'm currently on 2 antibiotics- bactrim and doxycycline.
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Hi Mommyathome,
It sounds as if you PS and BS are taking care of it. But of course if you sense something isn't right call. I know a couple of ladies here had to have some skin cut away. It actually helps new blood vessels to grow. The alloderm is the stuff that the PS put in to hold your TE's up.It is a synthetic skin. (I think it is synthetic.) I'll have to look it up. Just about everyone who has mx with recon has alloderm.
take care,
Eve
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Eve is right. Aloderm is what the PS uses to make a pocket to hold the TEs and Implants, but it is actually human tissue that has had the DNA removed. Some people choose to use a synthetic mesh, the name of which escapes me. I chose the Aloderm too.
I'm sorry this is happening, but it does sound like they are talking good care of you. ((Hugs))
Di
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Ok I knew it was human tissue but I didn't want to gross anyone out that didn't know that already.
hugs
Eve
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Mommyathome - that sounds awful! I'm sending you healing vibes......
Eve - it's good you like to do research. I did a lot, too, in the beginning. Except a lot of it was panicked googling in the middle of the night - before I used this discussion board....too bad, I could have used the support and reaped the knowledge of those who've gone before me. Oh well....I just think with all the genetics and molecular discoveries like with the Onco - we are on the cusp of discovering, if not a cure, then possibly a way to prevent bc in the future. A cure is something my best friend who died of bc over 20 years ago hoped would happen during her time. Things have really changed since then. Back then they were doing bone marrow transplants for breast cancer thinking that would help rid the body of cancer. Don't think I shared this before, but my best friend is the one who helped me find my tumor. I had a dream about her one night. The next morning I woke up, touched my breast and immediately felt "it." Thank you so much Sheri, my angel friend!! Without her I wouldn't have had found it early.
Ok, my rant for the day has to do with my in-laws. My biggest pet peeve is that they always ask my DH on the phone about me, and I suppose they think they are supporting me with their concern. I don't know about you, but when I hear them asking how I am, I just get mad....why don't they get on the phone and ask ME? I think they are providing support mostly to my hubby, which is great, but wish I could relay to them how much this hurts me when they ask him instead of me. IDK, people never act the way they're supposed to when you have bc, do they? Like the friends who don't call bec they think they always have to be in a good mood when they talk to you, or they don't know what to say so they don't call at all. I guess I'm the one who's gonna have to pick up the phone....and start the conversation (sigh).
We are socked in with the latest snowstorm and that doesn't help my mood! I always get this way this time of year...I hate winter!
thanks sistas, for letting me vent.
Hope u all have a great weekend!
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Hi ladies,
If you get on any type of antibiotic, buy a very good probiotic like Align or whatever, to keep away the yeast infections and tummy problems. They work better than yogurt and food products when you are taking these strong antibiotics. For the first time ever, I was able to take them when my drain was removed, without any SE.
All of a sudden, I started feeling some very strong sharp pains in a particular area under one breast and I happened to be at my PS office. He prescribed Gabapentin, which helps with nerve damage pain. Oh my Lord, it helped so much. You can take it with a pain pill and you get a lot of relief.
I didn't take radiation but does anyone have a recommendation for skin cream for your chest? My chest skin feels so irritated and I really don't know what to use.
You guys are so smart. I just sit back and read, read, and read! Thank you!
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Pelively,
You have some good advice of your own!
I've been having stabbing pains in my armpit area at night. Not bad enough to take something for it, but I'm hoping it's just the nerves growing back.
When my skin is really dry or irritated, I use Aquaphor. It's really a heavy ointment, tho, so be forewarned. I had read somewhere it's important to keep your skin from drying out. When I had my lumpectomy I broke out in a rash, so I saw my dermatologist who gave me a prescription that works great for any type of redness or itchy skin, but for general skin care, she recommended Cetaphil or Vanicream. I haven't used those yet.
The skin around my incisions is finally healing - it was pink and irritated after the strips were removed a few weeks ago and stayed that way for quite awhile. I used the RX cream from my dermatologist and then the Aquaphor which seems to help. If your skin is really dry like mine, drink lots of water and use a humidifier.
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At one of my very first post-op appointments the nurse at my PS office told me to use vitamin E oil liberally on my chest. She said it helps the incisions heal and keeps the skin supple, which is good for expanding. I've been putting it all over my foobs since then and haven't had any skin problems. There was one part of my incision that my PS was worried about (thinking it would open up) at one appointment, but the next week he said it looked fantastic. I bought a small bottle in the vitamin section at Walmart for a few bucks and I've only gone through half of it - so it does the job and it's cheap
I wear a sports bra because I didn't want the oil to get on my clothes, but I don't even notice it on the inside of the sports bra, so it doesn't seep in.Mommyathome - I'm sorry you're having problems. It sounds like your PS is on top of things, though. Sending healing vibes to you!
bc101 - rant away! People do NOT know how to act with someone who has had cancer. With me it's either feast or famine... they're bringing meals, taking my kids, calling and texting... and then for weeks it's nothing. I don't want people to be "oh poor me", but I also don't want them to ignore the fact that I'm going through all that I am, you know?
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Michelle,
Thanks! I was surprised when on Thursday when I saw the bs she said the ps told her it was eschar.. Of course I had no idea what eschar was so I asked my bs. She said the ps said the skin she removed was black. I didn't see any black!! The area look more yellow and open to me, the fluid was oozing out a bit, but black? Nope didn't see it. But at least they cut it off. My bs said if it were at all infected my ps would not have hesitated to admit me in the hospital for IV antibiotics. She said she doesn't play w that stuff do that's reassuring! My bs and ps work very closely which makes me feel confident and assured that I'm in good hands. I go to the ps weekly and if needed go to bs for aspirations. I have yet to have a fill. Is there like a safe time frame for the process of being filled and tissue expanders to be exchanged or no? I guess what I'm asking is it safe to keep the tissue expanders in for a long time? Right now I have 500 in one breast and 300 in the other and I believe we are working toward 750! Another question, with the removal of the eschar I had to be re stitched and have steri strips on again. No chance of a fill for awhile right? Does any one know if eschar is the same as necrosis? Is this something that once it occurs it is more likely to occur again? I am 3 weeks post BMx, I'm expected to return to my full time teaching job at 8 weeks.... Not feeling very optimistic!!
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