Mastectomy Sept 2011
Comments
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Oh Caryn. I wish I could give you a giant hug right now. This is a blow. It's not what you expected and definitely not what you wanted to hear. I am so, so sorry. Don't bother trying to feel positive - you need to process this and feel whatever you need to feel. It's OK to be overwhelmed, discouraged, sad, enraged. You will get through all this, but you should not have to. Cancer sucks, but we are here for you. Hang in there.
Sending love and support your way,
Sarah
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Caryn- my heart is breaking for you right now.
I too found out I had ICD and DCIS which I still haven't been able to wrap my head around. I had 2 biopsy s and both were DCIS for both tumors. Then to find out the IDC was 3 shocked the crap out of me. I had no reconstruction yet but I can imagine how upset you are.
Know that you will get through this and we will be here with you.
Cry, stomp and get mad... You don't have to be positive all the time.....sometimes life just sucks big time...
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Caryn,
There is nothing to be said that will make you feel any better and you are entitled to a down period. Please know that even though your road may be a bit more bumpy than thought, we are here for you all the way and send love, hugs & the shoulder to lean on.....
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Sarah and dancetrance,
It's good to hear back from both of you. I can't believe all the allergic reactions everyone seems to be having. It's becoming very common. Glad you both seem to be doing well. Give yourselves time to heal.
Sarah- I remember how long it took me to get ready for the day. I was allowed to shower after 3 days but it was exhausting0 -
Caryn- my thoughts, prayers and healing energy are with your.
It's so funny how different hospitals do different things. I also went to MGH. The anestheologist suggested I take ativan the morning of surgery. His recommendation was "just don't take three of them!" I did let the team know how much and when I took it. Took the edge off. For my SN- absolutely no pain. Didn't feel anything. The nurse said some people it feels like a bee sting, battery acid, or nothing. I was on on the lucky ones- nothing! She said she had no idea whay it affectes peopleso differently
Still have 2 drains in. Have started to drive! No pain meds for a week.
In terms of what I did to prevent constipation was- every time I took pain meds I took senna and/or colace along with it- no constipation or diarrhea for me.
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I guess there are some bright spots. Although the IDC is 4 cm, it is only grade 1. I am also 100% er positive. I am HER2- , but considered HER low which makes me eligible for a clinical trial to see if Herceptin would decrease chances of recurrence . It is usually used for HER2+ women but there is some strong evidence to suggest it may benefit those who are HER low. Reading through the trial info is making me dizzy. Caryn
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Caryn -- I am so sorry your path report was worse then you were thinking. I will keep you in my thoughts and prayers.
Sarah -- thanks for all the surgery info. I got permission from my Dr to take an Ativan morning of surgery yea... I luckily do not have to wait too long at the hospital we are to be there at 530am and surgery will be around 9am. Which is good since hospitals freak me out.
I hope everyone has a good weekend. Gentle hugs to all.
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oh Caryn, my heart aches 4 you. Let yourself feel your feelings - u don't have 2 b positive...u need time 2 process. <HUGS>
Sarah - I'm an avid exerciser, too - and I'm also surprised by how easily I am wiped out, too.Gotta b careul, b/c sometimes i push too hard.
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Hello, new here....48 yrs.I was diagnosed with bc May 2011, I am doing chemo, before surgery...the chemo was awful, now taking herceptin (weekly),,,getting ready on Oct 12 to do bilateral mastectomy...and am not really scared just ready to get this over. Cant do reconstruction until after lymphnodes are clean. (may have to do radiation)....I was diagnosed from biopsy, on lump and node. Anything you could tell me about your experience would be appreciated.
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hi everyone, i had a mastectomy in June. I have one chemo left and i start radiation real soon. real nervous , just want to tell someone.
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Caryn, so sorry to hear the news. Keep your chin up girl!
Dove, welcome to the group. I hope you find comfort here. Dive right in (that's the best way) and you may want to check out the Oct 2011 surgery group, although we have other Oct. girls here too!
dgonzales, wow, it sounds like you've about got your treatment finished. good for you! there are radiation groups on here w/women that could ease your mind and your fears. best of luck!
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Ugh, more bad news. Talked to ps and he said when he removes the nipple, he may not be able to put the permanent implant in and may have to put a TE in. Not what I wanted since that would mean another procedure for the exchange.
Lori, 40% recurence rate for you? Why?
Caryn
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MargieC - Can you add me to the group for BMX surgery scheduled Sept 29?
I have a rare sarcoma in my right breast that is yet to be identified - docs from Methodist Hospital and Mayo Clinic still cannot classify it.. So not traditional breast cancer, but cancer found in the breast. I am having both removed, the one with the sarcoma I had a lumpectomy last week. I am having the normal one removed as my mother had breast cancer and altho sarcomas do not traditionally spread breast to breast, I want both gone. No reconstruction now, as I want to focus on upcoming chemo and radiation, I am also getting a shunt put in my chest for chemotherapy prep.
Thanks for starting this thread. I am so glad to hear how everyone is handing the recovery period.
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Has anyone here noticed decreased appetite when on narcotics? I know it is a side effect. I'm finding I have to make myself eat since my surgery. Not hungry at all.
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Hello Ladies, I am glad everyone so far seems to be doing fairly well. I am 2 weeks post-op and am doing pretty well. I have been able to raise my arms above my head since about day 4!! I did have the PCA pump which was nice, but I found it annoying I had to hit it every 15 minutes, something longer acting would have been the way to go for me. They gave me Dilaudid due to allergies I have to some pain meds. I had trouble getting comfortable the first night. One of the medications they prescribed I was allergic too, so I tried to get it changed so I could take something else and spent all night waiting. I found out in the am that my nurse had the change and never informed me! So I had gone all night without proper pain control, which was one of my biggest fears. I have Celiac Disease and have to eat a gluten free diet. I ordered my meals after talking with the dietitian and was hopeful, but my meal came with Gluten! Every time I go in the hospital, the diet is always a problem. You would think that the one place you would not have to worry was the hospital. I was glad I had my own snacks and I just sent the hubby to buy food out of the hospital. I had a place on the right breast area of the skin that the PS was concerned about, so they sent me home on 24 hour a day oxygen. I was finally able to give that up this week. The PS said that O2 helps with healing, so he was taking extra precaution. I then started having 2 areas that were turning red on the right area so I had to have my antibiotic changed. I still have one drain left and I am hoping to get this one out next week. I am having a lot of swelling on the right side, so much I don't want to put my arm next to my body. It can be quite uncomfortable at times. I am getting very stir crazy and ready to get going, but I have to keep telling myself that it has only been 2 weeks and I need to take care of myself. I haven't had any pain with the removal fo the drains. I take on occasional pain meds when the swelling is bad. I am so blessed and thankful for my hubby and daughters and son who are taking good care of me and making me rest. My pathology report came back that I had a lot of precancer cells, a busy breast the BS said. I had an MRI a month before surgery and none of the things I had show up in the path report, showed up on the MRI. I would have been in for a long fight without the PBM. She confirmed I definitely made the right decision to have BM
I am so thankful I went with my gut, intuition, God led decision. I pray for each of you that your recovery is going well.I was talking with my daughters who are both married and told them when they are older and the girls are falling south, I will still have perky twins!! LOL. I hope the fills go well for me and that it doesn't take too long to get to the desired size. I want it to be over. Allison
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Hey dgonzales - Your doing great. Last chemo and rad is on the way. Why are you nervous girlfriend? Sounds like your moving forward and overcoming the processes one by one. Sounds like you need a BIG HAND from all of us. One foot in front of the other and it's all gonna work out. You have a great week!
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Got my drains out this morning and found out I had stage 2 TN cancer. No pain in the breast area at all but under the arm I had 9 nodes removed and my surgeon said they really have to move muscle around to get @ what she called a fatty pad with the nodes embedded in it. She pulled the 9 and 6 were cancerous although my biopsy didn't have any cancer cells in it. She told me from the get go she felt like the cancer was in the nodes and she would be removing a few just to be on the safe side and I'd say she's been around BC for a long time as she was right about all of it.
Chemo starts next week with the Oncologist waiting to see me, but I'm doing okay. I get tired but I keep moving as I figure when the chemo starts I'd better have things under control within my environment. Sorry a few of you are going through so much with the surgery. Here's hoping you feel better within the week. Lots of fluid lots of rest.
dancetrancer - Yes I've noticed a decrease and constipation and mood swings with Norco for the pain. I take tylenol in between so I only take it @ night. I also get kinda sick to my stomach on the stuff. Call your doctor and see if he can prescribe something different if it bothers you that much.
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Odie16
I like the way your friends think , I think that was an awesome idea and send off ;-) and yes thank you I do find great comfort in how well you ladies all seem to be doing... Thank you all for your posts they are truly an inpiration and comfort (not that I'm not terrified still but it sure helps having you all as a guide and support) you are all in my prayers
Lisa0 -
Caryn, I am sorry, I should've clarified my note. Oncologist told me I had a 40% chance for recurrence if I did not have chemo. Since I'm doing the chemo, of course, that number is lower. I was a bit stunned and didn't realize I didn't post it all. Sorry for the confusion!
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Lori, thanks for the clarification. You scared the life out of me! My diagnosis is public now so you can see that I have a variation on your diagnosis. What chemo will you be having? I don't know why I was so naive but some part of me thought I wouldn't need chemo. I guess that's why I'm in shock. I still question why they are saying rads too. Caryn
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Hi,
I had a BMX & SNB (4 nodes each side) on 9/20. Great news the nodes were all clear. My surgery started at 1:30 pm & they sent me home around 11am the next morning. I had trouble with the hydrocodone/vicodin causing facial swelling & bad stomach cramping. I switched to Tylenol3 but by yesterday starting alternating Advil & extra strength Tylenol. The pain isn't horrible, more like a toothache especially in the armpits.
I am having problems having a bm. Started taking Colace the day after surgery & have taken 3 per day as well used glycerin suppositories. No relief. I have plenty of gas.
It's very strange for me to be writing this post but am hoping someone may have suggestions. I'm not getting great sleep, waking about every 2 hours. I've been drinking lots of water plus small amounts of food (not much of an appetite.
Thank you in advance for suggestions.
Newfmama aka Deborah0 -
Take Miralax as well. I took 2 colace and 2 senna 3 times a day while on narcotics. Usually have a bm 2- 3 days after taking stool softeners
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I love my breast surgeon. She called me last night at 7 to give me my final path results. I had 3-4 tumors in left breast! Right was clear. I will be meeting with the "team" in a few weeks to discuss chemo/ radiation. I was convinced I would not need either but there is so much that is out of my control.....end result- I am here and will be for a long time
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Newfmom-
I'm so sorry your feeling that way newfmom. Having nodes removed whether they are cancerous or not painful and uncomfortable. Just my one side causes sleeplessness. Laying on your back to sleep without being able to turn is really hard.
I'm fighting constipation with lots of fluids, fruits, vegetables, grapenuts cereal, and colace. It helps.
If all else fails you call the Doctor and ask for Lactulose liquid. It's a fast acting liquid that will help relieve your problem. Pharmacists can be your best friend as well in times like these.
Keep those liquids going in. Any type of painkiller is going to cause these issues, some worse than others. Don't feel like your alone in this as we all go through it.Hope this helps and you start to feel better soon.
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Newfmama, I can totally relate. I had surgery on 9/20 as well (BMX with immediate recon), and I have not had a BM yet, despite taking the Colace 3x day starting the day after surgery. Same exact symptoms as you. I also have lost my appetite, but I have been forcing myself to eat, especially protein, since I have heard that is really important to the healing process. I believe the not eating is also a side effect of the narcotics. I don't have any other suggestions except to make sure you are doing some walking as that is supposed to help get the GI system moving. Unfortunately, I'm doing lots of walking, but no results yet.
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Newfmama,
I agree with the suggestions ,especially walking. I drink senna tea ( Smooth Moves) and eat probiotic yogurt. Prunes and prune juice are good too. I am miserable when constipated but it will pass (pun intended). Caryn0 -
Caryn, I can only imagine the surprise of your dx, esp. when you weren't expecting it. I see we are similar in our dx, so not sure why no rads for me, but for you. I didn't have the shock factor as my surgeon had told my family after surgery that chemo was likely w/the nodes being positive. Then, he also brought it up and scheduled the port placement at my follow up w/him. I kinda knew what the plan was before ever meeting w/the oncologist. Although, I will say, you always hope the final word will be different!
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Hi Ladies,
Thank you for your suggestions & encouragement. I called the Dr to get her recommendation also. About 15 minutes later, nature took over. Halleluia! I won't be taking anymore of those nasty painkillers.
I have another question. I seem to have a rash inside my right cheek & tongue. White bumps, reminds me of the thrush my babies had. I should have ask Doc but forgot.
Thanks again.0 -
Thrush is not uncommon with cancer patients as well as the babies. You probably do need to call the Doctor back and ask for a prescription as even if it's an easy fix it can be difficult if it gets out of hand. And you'll just feel better.
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Hi Ladies - tried to check in this a.m. but got too tired and had to quit posting. I am on big doses of Benadryl and they are just wiping me out. I feel like a toddler - I need an a.m. nap, a p.m. nap, and need to be asleep by 8. At least sleep is good for healing, right?
Newfmama - yeah for your BM success! Nothing worse than being stopped up. I am a fan of stewed prunes, but those might not be enough for some folks. They did the trick for me, and if I remember correctly, I think I posted here about how I set some sorta record at the hospital by having a BM w/i 48 hours of my surgery. It was delightful. Really, it's those little things that mean so much now, isn't it??
As for thrush - common b/c of antibiotics, I think - so get it checked out for sure.
I took a shower today. Because of all my tape allergies, I have no tegaderm on my incisions, so they told me only sponge baths 'til I see my PS on Thurs. Luckily, I'd ordered a "shower shirt" and so I slipped that on, tucked in my drains, sealed it up and hubs hosed me down and washed my hair. It was like a religious experience. No blow-out, so not looking so hot, but I feel clean, at least. That whole event, of course, wiped me out for the rest of the day! And 3 of my 4 drains are already low enough to remove - drain #1 is the big producer, but I'm pretty sure that by next Thurs. when I see my PS, she can remove ALL FOUR FRICKIN' DRAINS. For those of you who haven't had surgery yet - they are not painful, just a pain in the rear. And they make you feel a little freakish to boot. I will dance a happy dance when they're gone and slip on a nice, form-fitting tank to celebrate.
Trying to remember all the other news I've read here. Oh, Caryn, yes - it is a really good thing that you're grade 1. I know you're still incredibly disappointed about the news, but the fact that you're HER2- and grade 1 is nice from a recurrence perspective. My first cancer was a monster - grade 3, HER2+ - everyone was so freaked about mets/recurrence, and lookit - almost 10 years out I've had neither. 2nd cancer is totally different and unrelated to that one. I'm goign to keep fingers crossed for you that somehow there's enough skin left after excising your NAC that you don't need a TE. I've been thinking of you and hoping you're hanging in. Sending you lots of hugs.
I'm sure there's something I've forgotten - will check in later but know that am thinking of you all and sending out love and hugs . . . .
Sarah
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