March 2014 Surgery
Comments
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Brave- how awful of your sister -sorry if that comes out strong, but jeez! I would be so angry and hurt too.
Julie-- GREAT news!!!
I just got off of the phone with the hospital with the pre-op interview. My pre-op is on Monday. She went over everything to expect-- I am same day, and will hopefully be home before the kids get home from school. I can't tell if I am nervous or if I am feeling like Holy Crap, there is so much to get done before then!
My biggest concern about the surgery is that they will find more than simply DCIS. Does anyone know how common that it?
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Needing to vent, but not wanting to show it even though I have a great support from friends and family. My DH sees this side and am not fully disclosing how low I am feeling right now. I have been upbeat and strong until a few days ago. The hormone inhibitor is kicking my butt. My joints are killing me, especially my wrists. I have a month until my DMX with TE's. I have so much I want to organize, clean,prepare,etc and all I really want to do is bury my head in the sand. Please forgive me for my pity party, but thought that if I purge myself that I may feel better so I can move on. I am trying to be positive and I know I have alot to be thankful for. I am fortunate that I do not have to do chemo, I have clean margins (lumpectomy was 12/30), I'd like to hear from anyone that has been on Anastrozole and what tips they can give me for this nasty drug...I renamed it A Nasty Zole. LOL. My doc said I should be on this for 5 or more yrs!! Ugh! Since my dx Dec 13 (Friday lol), Also, packed on at least 8 lbs. I was hoping to drop 10 before surgery so now I need to drop 18, but all I seem to do is mindless eating. May pop in to weightwatchers tomorrow...Anyway, thanks for reading. I think I feel better now
Thank you for starting this group so we can get out our feelings out without burdening our loved ones. -
Faery, I had DCIS in one breast. The other side was clear, or so we thought. Pathology on the "good side" after my BMX showed extensive LCIS. I was shocked and mad at my docs for not picking it up on two mammos and an MRI. What if I'd decided on a single mastectomy? Then I learned more about LCIS and found out it is hard to diagnose, especially in women who have dense breasts. But it is slow growing and often stays in the lobules. Only 10-15% of breast cancer is invasive lobular carcinoma. I know now that finding LCIS in one breast raises your risk of DCIS or another type of breast cancer in the opposite breast. My oncologist said LCIS is tricky and more "worrisome" than DCIS for that reason, not because of the LCIS itself. So apparently I had LCIS for a number of years before the DCIS showed up.
However the same isn't true of DCIS, which exists without being a marker for cancer in the other breast. My oncologist says with DCIS, the most current recommendation from NIH is if the patient has a lumpectomy with clear margins and nodes, then she needs radiation and tamoxifen for 5-10 years to prevent possible recurrence, but no chemo. If she choses mastectomy & the nodes are clear, no radiation is given and no tamoxifen, anastrozole or chemo is required. DCIS and LCIS cannot recur if there are no longer any ducts and lobules. They don't grow anywhere else. So nothing more than mastectomy is required. My choice was mastectomy to avoid the side effects of radiation and tamoxifen, but knowing there can be some tough times after a mastectomy too. Others might make a different decision for equally "good" reasons. No one is right. No one is wrong. It's a personal decision and I hate that cancer makes us face the choice and wonder for the rest of our lives if we made the right one.
DCIS and LCIS patients don't require chemo because those cancers rarely spread outside of the ducts/lobules. They do not give Oncotype DX tests or HER-2 testing to patients with DCIS or LCIS either now because they won't be getting chemo or Herceptin. I asked my oncologist at my first 6 month check up last week why some women with DCIS are getting those tests, and she said it may be a physician's choice, but insurance companies are not going to continue paying for it, based on these new findings. I believe her, I trust her, and I know she is young, up on all the latest studies, has published some well respected findings and a rising star at a large regional military medical center and teaching hospital. BUT, I have to admit I wonder if, years from now, the NIH is going to reverse itself and I'll wish I did get chemo or hormone therapy. <sigh> The fact is, there is no cure for breast cancer. The best we can hope for is to be NED - No Evidence of Disease. It's like waiting for the other shoe to drop. No wonder we get mad and depressed.
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sandra and faery - the reason chemo is not required for pure DCIS is that chemo is a systemic treatment, not designed to kill cancer localized in the breast, which will be removed surgically, but rather a treatment to kill cells that have moved outside the breast. Since DCIS is by definition in situ, or confined to the breast, chemo is not required.
There actually is a new Oncotype test specifically for DCIS (see the link) and its purpose is to predict a recurrence of DCIS after breast conserving surgery accompanied by radiation. This testing is not for purposes of a decision about chemo like Oncotype DX is for invasive cancer, but rather it informs a surgical decision between lumpectomy and mastectomy by helping predict the risk of recurrence.
http://breast-cancer.oncotypedx.com/en-US/Patient-DCIS/WhatIsTheOncotypeDXCancerTest.aspx
Her2 testing for DCIS is sometimes done, and can be a physician preference, and there are some clinical trials that are looking at whether there is benefit from further investigation into some additional treatment options for Her2+ DCIS.
http://www.ncbi.nlm.nih.gov/pubmed/24202240
http://clinicaltrials.gov/show/NCT00769379
http://clinicaltrials.gov/ct2/show/NCT00496808
Finally, here is some info from Beesie on DCIS and invasive cancer:
http://community.breastcancer.org/forum/68/topic/719826
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I will be having BMX with latissimus dorsi reconstruction on March 21. My dx is multifocal DCIS (ER/PR+) and I have a BRCA 2 mutation. Wishing good luck and a speedy recovery to everyone!
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You are right before me GabriellaM. How are you coping with the stress/worry/waiting part? It's starting to get to me, but think alot of it is the AI I am taking. Starting reading today that it can cause depression so it helps to realize why I am feeling like such a downer. Wishing you the best as well.
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SpecialK, thanks for the links. Oddly enough I enjoy reading studies. I know some people don't. I'll be busy the rest of the evening.
GabriellaM, welcome. We'll be "on the table" at the same time I bet on Mar 21.
Kitty, you have the AI to deal with AND the normal freak outs, insomnia, nightmares, and worries before surgery? So sorry. It does seem to help to know that others have felt depressed too.
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Kitty- I totally get the need to vent/head in the sand. I feel that way very often about my Lyme disease. I usually try to allow myself a set period of time to feel sorry for myself, then the next day, I make myself move on. Sometimes that involves the "Fake it 'til you Make it" premise
SpecialK - thank you for those links-- I too, like to read the research.I am still waiting for BRCA results. wait, wait wait!Ugh!!!!!!!!! LOL!!!
One more stupid question-- are many of you pre-menopausal? I am 45 and still have regular, very heavy, painful and horrible periods. I get crazy moods swings from that, as well as from Lyme, and I cannot imagine what it will be like when I get to the hormone therapy part of this.
I know this is the Surgery section but you are all so sweet here, that I thought I would ask that too.
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Needing some opinions. I am scheduled for my DMX with TE placement on Mar. 17th. Last Tuesday I woke up with a sore throat that has gone on to a head cold, body aches, fever etc. Still not feeling better today and wondering if I should just go ahead and go to Urgent Care to see if antibiotics will help or wait until tomorrow and call my surgeon and get her opinion. I hate to wait and have them postpone surgery because I have been waiting since Dec. 12th to get this done. Really don't need this on top of the wait and worry over surgery
Thanks!
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Faerywings, thank you for getting it right on the head. I did feel a bit better writing it in the sand. After I wrote it I started ripping all the linens out of a very full closet, washed and sorted what I never use(which was alot!). It made me fake it til I simmered and was back to normal that afternoon. Ive never written in the sand but I may need to more just to get it out instead of being brave til I burst.
Waiting is THEE hardest part. Thank God for messy unorganized closets. Ha!
I am post men. Had the wild mood swings and painful periods. One thing that helped was getting on a low dose of Amitripyline for the mood swings. I think I was about 48 when the periods got so sporadic and lasted for sometimes up to 10 days that I did the uterine ablation. It worked great for me, but I've heard it doesn't always work.
Sandra4611,
My only SE from the AI's are joint pain and sudden depression. Not sure where you got the freak outs, insomnia and nightmares from. Lol
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Kitty, the majority of us have a tough time in the weeks before surgery. Intense worry, mood swings, insomnia, depression and nightmares are commonly reported from time to time as the date gets closer. Glad you haven't had most of them. I know I was comforted by finding out what I was feeling was normal and would go away.
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Sandra4611, I have to agree with you. My surgery is 3 weeks away and I am already having a tough time with it. Sleep is an issue, the worrying never stops, and depression is always there. In fact I am calling my surgeon tomorrow for all of that and to see if I need to see her or a general physician for this flu/cold. It is good to know that it is normal but a lot of people don't get that.
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Please add me to the list; my surgery is March 10. I will be having a BMX with reconstruction using temporary expanders. I had a sentinal biopsy on February 12. The surgery wasn't as bad as I expected and the nodes were clear, very good news. This almost felt like a dry run with my surgeon and has built trust. I was very anxious before surgery and am beginning to get nervous again for the one on March 10 already. I will be having the oncotype DX test, but it has been indicated to me that I should probably have chemo given my age, 43, and the fact that I have IDC and two spots of DCIS all in the same breast, poor lefty. I'm so grateful to have found this group. Thank you for starting it, Sandra. I'm sorry that we all have to go through this, but at least we can go through it together.
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Hi everyone. I have been reading your posts and many others for a few weeks now. I think that I have been afraid to post anything for fear of making this whole thing real. I did the BRAC testing 10 years ago and was negative. I had been watched closely at Dana Faber because of my strong family history but when the testing came back negative I was told that I didn't need to be watched as closely and that going to a local gyno and doing yearly mamo's would be enough. Now I have been DX with DCIS and will be having BMX on March 6th and hopefully it will be skin sparing with immediate implants. I am also getting an oopherectomy on April 1st.
I have been playing the fake it till you make it game up until now. Surgery is close and I suddenly don't know how I am going to get everything done. My husband and I have 3 children 11, 5 and 3. We just adopted the 5 and 3 year old in November. I wish our crazy schedule would just stop for a min so that I could deal with this.
KLJ... sorry you are not feeling well. I have to call BS tomorrow too because I have a horrible tooth ache and think I might need a root canal. Not sure if that is something that should be done right before surgery but afraid to wait too.
Sandra... Thanks for starting this thread. You seem so very kind.
Faerywings... I too am very fearful of them finding more than DCIS
I'm looking forward to getting to know all of you and very thankful that this board exists.
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Faerywings, I am 46 and pre-menopausal. After my bilateral MX, I'll be doing tamoxifen. I thought AIs were for post menopausal women? Is anyone else counting the days? 15 more days for me. Yikes! I have a lot to do at work the next 2 weeks to keep me busy. Wednesday I'm getting my Mirena IUD out, Thursday is the pre-op with the plastic surgeon, then one more pre-op after that.
I emailed my surgeon a few days ago about whether I need a sentinel biopsy on the prophylactic side and he hasn't answered yet. I have a couple of suspicious spots there that he said he would have had me get biopsied if I wasn't doing mastectomies. I'm afraid of lymphedema. I'm hoping they can check them out while I'm on the table.
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Stfne, welcome to the club that no one wants to be in! We are all so fortunate that we have found our way here. I hope you get your toothache issue resolved. Keep us posted on your progress!
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Oh my! I just INHALED 2 cups of coffee and a granola bar.
I have pre-op testing today and a 6 hour fast. Needed to get all of that in before 5.30 am today!! sending good thoughts to all of you as March gets a little bit closer every day!
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Hmmm. They didn't tell me anything about fasting for either of my pre-ops. I don't even know what time I need to show up for surgery yet. 14 days...
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julie - you need to think carefully about SNB for your prophy side - it will cause limits on the use of both arms in the future for blood pressure checks and IVs, needle sticks and injections. Have you had a pre-surgical MRI of the prophy side? It is also important to note that the look at sentinel nodes in the OR is a cursory look, and it can miss micromets that are picked up later during the more thorough pathology in the lab.
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Hi Specialk. That's what I'm worried about. That I could get problems with both arms. I'm right handed so I want that arm to stay good. My surgeon didn't want to do an MRI since I'm doing a bilateral anyway and there are a lot of false positives. Hopefully he'll write me back soon. I like the idea of the "Pink Lotus" method where they shoot the dye on the prophylactic side but don't take any nodes until final pathology comes back a week or so later. I've heard that doing a SNB after mastectomy is impossible otherwise but with this method, the nodes would still be blue. I don't think it's commonly used, though.
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Julie - I don't think the Pink Lotus method is commonly used either because it is a newer concept, but worth a conversation with your BS, because it is a sensible option. From a cost/ insurance perspective, it might be a toss up between the dye injection prior to surgery or a pre-surgical MRI, and because it is not commonly done you might need to make sure your insurance would cover it. I had a BMX, with a pre-surgical bi-lateral MRI with false negatives, and I did also have a bi-lat SNB.
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The waiting is always the hardest part. For my surgeries I had a date and time for a few weeks, and some basic instructions= when to stop eating, which meds to stop a few days before hand, etc. The hospital called the evening before to verify the time, in case its moved, and verify the fasting instructions. Basically you probably cant eat after midnight the night before, but that will move if your surgery is very early or very late.
Try to get pain med prescriptions filled before hand so you have them at home already after surgery. There's good threads here on preparing for surgery etc, so that was really helpful to me.
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Aviva had good info, especially about getting your meds ahead of time. The last thing you want to do is get behind the curve on pain meds. It's harder to catch up.
It's not unusual to not know your "show time" until the day before. The schedule gets moved around as new patients are added and depending on how long each procedure is expected to last. Even then, if you are "second case" you can be delayed for an hour or more if the case ahead of you takes longer. It's happened to me on my third surgery and the waiting was really hard. I kept getting more and more nervous and began thinking about pulling out the IV and heading for the nearest exit. If that happens again for this next surgery, I'm going to ask for some Versed to calm me down.
Although I had never taken anxiety reducing drugs before (or since), I did ask for some in the final ten days before all three of my surgeries. Some days I was depressed and some days full of nerves. The "what if's" were driving me crazy and I spent many a night staring at the ceiling. When I did sleep, I had weird dreams and sometimes nightmares. My doc gave me Ambien with the instruction to take it only 3 times in a week. Worked great! Not sleeping was making my anxiety worse. I had no side effects.
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Re: Sentinel Node Biopsy
Some people have it done a week prior to surgery and some on the surgery day. There are two different kinds, one where a blue dye is injected (often while you are on the table) and one where you are given radioactive isotopes two hours before surgery. That's what I had. The radioactive isotopes travel from the areola, through the ducts, to the first (sentinel) lymph node. The doc uses a Geiger counter in the OR to locate the sentinel node. If the blue dye method is used, the doc looks for the blue lymph nodes. If the sentinel node(s) are clear, there is no reason to remove any more lymph nodes. It's a vast improvement over the days where all or many of the lymph nodes in the axillary (arm pit) were removed. The more lymph nodes that are removed, the bigger chance you have of lymphedema.
Re: Lymphedema
During my last hospitalization, I was visited by an occupational therapist who said all breast surgery patients should ask their doctors to order a consult. An occupational therapist can provide garments and teach techniques to recognize, reduce, or avoid lymphedema if possible.
I'm lucky. I've never had the first sign of lymphedema in spite of three breast surgeries but realize it can still happen with my next one. Several women in my local support group developed it months after their surgeries. One has to fly with a full arm/hand compression sleeve and another makes regular appointments with a physical therapist who does a special kind of lymphedema massage. I am careful to not allow blood pressure cuffs to be placed on either of my upper arms since I had a bilateral mastectomy. (Ankles best and wrists second choice.) You'd be surprised how many medical people you interact with who have no idea why you need to avoid this. I have bright pink Lymphedema Risk - No BP or Needle Sticks plastic bracelets for each arm that I wear to the hospital. I also ask for a sign to be put above my bed. There are threads on BCO that go into detail if you are interested.
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Hi Ladies, they've bumped my surgery date from March 5th to March 7th.
Scheduling issues with the OR. Another long, complicated case that day and plastic surgeon didn't think she'd have enough OR time for all her cases that day. Only a 2 day bump I know but still frustrating. Messes up my leave from work and my brother's flight in from Colorado to be with us, not to mention 2 extra days to worry. Sigh.
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Franny: yuck! Plus that means we will not be having sx at the same time! **sighing**
Julie: listen to our SpecialK -- she knows what she is talking about! And Faery, your story of inhaling coffee and breakfast made me pee with laughter! I am not sure you are really adhering to the SPIRIT of the fast!
XXXXX
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Re: Sentinel Node Biopsy
Can you tell me more about the risk/signs of lymphedema? I had a SNB on February 12 and was told the risk of lymphedema was low. They only took 3 nodes. No one mentioned not to have my blood pressure taken or needle sticks on that arm. I now have numbness down the back of my arm, around the back of my armpit, and down my side. The surgeon said it was due to the nerves and will go away within six months or not. Is numbness a sign of lymphedema? I'm feeling very uninformed, although I thought I did my research.
As a side note, I had both the radioactive isotope and the blue dye for my procedure. I guess some surgeons use both.
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Blueberry, since you had both kinds of dye for your SNB can you tell us about it? Was it painful? This is one of the things that I am worried about the most. I have heard that it is excruciating and then I have heard that it's not so bad. What's your take on it?
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Blueberry I dont think that is sign of LE. Its more the nerves that were cut and damaged for the snb regenerating and healing. Mine was in Aug and Im about 80% improved of those symptoms, and hopefully will continue to feel more normal. I had 2 nodes on one side, 6 on the other. I did go to pt with a le specialist who did some measurements and told me of things to watch for. I know you can get le at any point, but I think having so few taken is going to give me a super low chance of getting any signs of LE. She said dont really worry about it, but do get sleeves for flying. On my own Im choosing to get bp and sticks done on the left side, which had the fewer nodes taken.
Ref the shots for the snb prep: Mine was not terrible. The pain I felt was for about 10 seconds, not long, so bearable. Then I felt nothing more as it spread and they checked to see if it was far enough into the nodes. A lot of women get emla cream about an hour before hand to help numb the area (on either side of your nipple) where they do the shots. I had had an lx 10 days prior so had areas that had no feeling anymore, so of the 4 shots (actually 6 since one side didnt work the first time, yuk), 2 were not too good but 2 were ok. The nice nurse had me grip her had hard as I held it over my head, and that helped. I think its all worse thinking about it than the reality.
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KLJ,
I had the dye injected prior to my lumpectomy. It was nothing really. I was NOT told how these injections were done. It was nothing. The tech said it would feel like a bee sting. Ummmm no. More like a tiny tiny prick. I must say it WAS a little awkward having a needle going into your breast. Also, odd to having a tech poking your boob and your husband watching.
Now getting an IV placed with my tiny uncooperative veins...that hurts. LOL let me know how it goes for you.
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