July 2014 Surgery Sisters
Comments
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Absolutely no offense taken, paloverde...I just didn't know if you realized I had already had my initial surgery and knew my tumor stats, etc
Glad to hear that what neuropathy you did end up with is now manageable! -
I'm officially a July surgery sister with a successful procedure and had immediate reconstruction with expanders. I had three drains removed after 10 days which I was pretty happy about. I spent three nights in recovery at the hospital with a lot of pain, faint spells and dizziness. I also had a difficult time getting deep breaths. My expanders feel like giant metal plates sewn under my skin and tied around my chest with the tightest wire bra I've ever worn. Tramodol, Valium, and norco are my helpers two weeks post still. My BS thought tumor was 2 CM but discovered it was a a bit larger, closer to 3 cm after removal. My nodes are clear, Sentinel dissection was negative, less than 3% of the whole. However the tumor apparently showed smaller tumors attached and I was told a few days after surgery that treatment might be more likely with those findings. I am confused because I had all breast tissue removed. These weren't seen on imaging before surgery. I had been hopeful about not needing rads, especially with clear lymph, but now it's looking like I will be doing both chemo and rads possibly. My PS wants to begin fills before rads begin if this is the case. I won't have the final answer until onco test comes back Aug 6. Have any of you experienced this, if my onco is low, and they've removed all tissue, aren't i in good shape? I'm so confused, I know I won't find answers here, just venting and seeing if anyone else had anything similar happen. I hope all of you July surgery sisters are on the mend!
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i had the reconstruction of the botched reconstruction last Wednesday. Had to spend a night in the hospital because I didn't wake up very well. My husband and I went to bed in our bed with a pillow between us like we've done for the past month. I miss him so much next to my skin. I couldn't get up out of bed to pee. He pushed my back to help me. I made it to a sitting position where I blacked out from pain. I felt it underneath my foobie with a sensation of the pain dripping down within my flesh. Now, I can't use my arm due to pain. To touch me is even unbearable. I am now swelling again above the muscle. It has obviously migrated out of the pocket again. I am useless. Two hydromophone every 4 hours isn't helping. I met my oncologist on Tuesday last week. He and his fellow will never touch me. Dr.K. is the most arrogant puke I have ever met. My report stated that some of the tissue was shredded when received, but appeared to have no clear margin. I asked some of the questions from the brochure from this website. He said I needn't bother since he was planning no treatment. My breast was removed, so there was need for treatment. I asked where the report said no vascular involvement. He said I don't need to worry about it. He also told me that the suspicious area in my left breast seen on the MRI was also cancer. I was breifly relieved that I had opted for the left mastectomy. We met with the surgeon following that waste of my limited time and money. She apologized for him. She also said that my pathology report is wrong. I didn't have cancer in my left breast. She added that she was unhappy that no clear margins were identified in the shredded tissues, but the side effects of chemo are so bad, she's not referring me for treatment. I will call another oncologist on Monday. I thought the depression had lifted. I can't stop crying tonight. Do any of you just get tired of all the drama and want to give up? Is it just me ? My journey has been a nightmare from the first mammo last August which was clear to the physical in September which was fine through all 5 doctors, multitude of mammos and US's to this. I'm just so tired of all of this.
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Becky63, I really feel for you. I too have left doctors' offices in tears between November and today.
You are strong and will get through this. Will pray for you.
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Becky- So sorry you are having to endure all this along with what seems to be a very uncaring doc. Can you switch to someone else? I know others have made changes and felt so much better after they did. Take care and know you have support here!
HollyD- Sorry you are here but so glad you found us and welcome...you are an official member of the "These TEs are Annoying" club! Just when your muscles get used to them, another fill and muscles spasms again. A lovely cycle. Others have had fills then radiation or treatment so they should be able to share their experiences with you.
Ally
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Hi MEL147- I have not been instructed to start any arm exercises yet but like you am anxious to begin! My previous exercise addiction (Barre Method) requires lot of upper body strength and I am wondering if its something i'll actually ever be able to participate in again. I will ask PS this weeks appointment for sure as when to start...may even research PT options as to get moving along faster. I am able to put my hair in ponytail and reach an upper shelf. Arm with Cancer and SLN removal def more sore.
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pjc - I chose the BMX over lumpectomy and radiation (which was the recommended course of treatment) because I have a family history of breast cancer and was told I had a 10-50% chance of recurrence. So, rather than have to worry about if/when the cancer would return, I decided to just get rid of both breasts.
HollyD - good luck when you talk to your doctors. The waiting for results and making decisions is the hardest part! I hope you get the answers you need soon to put a definitive plan in place.
Becky63 - Hang in there! I feel terribly about the way you are being treated by the healthcare system. I hope you know there are so many people here for you both when you're feeling down. While our experiences may all be different, I am guessing our collective emotions tie us all together. Feel free to cry and reach out here when you are frustrated, hurting or otherwise down.
To everyone else - I am glad I have found you all (although I wish the circumstances were different!)
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OK, I've taken my diazepam (generic valium???) and out on my patch and eaten my last meal. It's off to bed, and heading out tomorrow around noon. Will check in after I get get to my sister's house as I don't have a smartphone and I'm not taking my tablet to the hospital. Hope everyone's doing OK!
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Straitlover, You are in my prayers. You will be home soon. Let us know how you're doing.
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Straitlover - everything will be just fine!
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Hello all it has been a while. Surgery went well. 6 hours. I was in ACU over night for the breathing but refused pain meds so I didn't stay sleepy and was able to go home the next morning. I took some when I got home. Got drain out on the following Monday and everything is healing well, all stiches gone now and tapes. Starting Rads in 3 weeks or so. It hurts and it itches like crazy. They took 11 sentinel nodes but after all everything was cancer free so doing the happy dance.
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Great news, Tek!
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tek, I am so happy for you. Such great news and you're doing well. How's it going with chemo?
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Hello, ladies,
I was on the May surgery list but am having another mastectomy tomorrow with sentinel node biopsy . My first mastectomy was on May 29th, with axillary dissection, and I'm all healed from that. I will not be having reconstruction. After all the brouhaha with the right breast I finally got around to having an MRI on the left, and a 1 cm spot "lit up". I said "take it off".
My question is this: for the sentinel node biopsy (which is HORRIBLE, painful, agony, the WORST pain I have ever had, and I have a high tolerance) can I take vicodin, or valium, or both beforehand? I also have marijuana candy at my disposal.
I would have asked my surgeon yesterday if it had occurred to me, but he's not the one that does the SNB. I also would fully disclose to medical professionals if I take any drugs the day of surgery.
Thoughts?
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solace, I asked for a Valium when I arrived at the hospital and they told me I could not have one before mastectomy (and I was allowed one before lumpectomy/ sentinel node biopsy). I wouldn't take anything without getting permission from the surgeon first.
Just talked to my own surgeon and the pathology report showed no lingering cancer in either breast! What a relief. He did find a benign fibroadenoma in my right (healthy) breast (which, ironically, is what we assumed the cancerous lump was at first), and that just makes me even more glad that I went ahead and took that one off too because finding that lump eventually may have sent me over the edge! 😁
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Straitlover - best of luck today! I will be thinking about you and praying for a great outcome. It will be over before you know it.
Solace - I have a friend who was given an anti-anxiety medication (clonapin? lorazepam?) to take the night before and day of surgery. When I got to the hospital, they asked me if I had taken that as well. So, I think it is possible to take something prior to the sentinel node injection and surgery. If you get this before you go to the hospital, I would ask the nurse as soon as you arrive and I bet they can give you something for nerves.
A quick update here - I am now 10 days out and besides the limited range of motion in my arms and general arm weakness, the worst part is dealing with the remaining drains (both itchy where they go in and a pain to hide under clothes!). I am hoping they come out next Tuesday. Every day, I am thankful for the little improvements (for example, last night I was able to roll slightly on my side when my back started hurting and today I was able to get something off a higher shelf). I'm now feeling well enough to get online and do some work from home which is helpful to me because I love my job.
A question about bras for all of you who have had immediate reconstruction with implants - I was told during my PS visit that I would never be able to wear an underwire bra again. Has anyone else heard such a thing? It didn't come from my PS so I wasn't able to query him about it but I got the impression I would have to wear a sports-type bra the rest of my life. Is this standard?
Hope everyone is doing well!
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I'm 6 days post op and wishing the one morning I would wake up and feel some improvement in my pain, but I think I'm stuck until the drains come out. I don't have any pain in my incision areas, just where the drains are. So frustrating, as I feel like I'm not making any headway in recovering. It's like Groundhog Day every morning hahaha
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belleb- those drains are such a pain. The area under my arm, along my side where two of them entered is still tender today. Those areas were the most sensitive to any pressure and it was a huge reli ed to get them out. The area is still sensitive but not to the degree it was. Hoping you get those drains out soon and some relief on those entry points.
Jill8- every PS is different about bras and underwire. Some PS say never, others say 3-4 months, some say a year...it varies. I have read concerns about puncturing the implant as the reason but there may be other reasons. You might just ask your PS what his concern is. Go to the bra thread and some you might find some suggestions for some wireless bras that aren't sports bras. Some places even remove the underwire for you if you find a bra you like. Can't remember which store but it is on the thread. Best of luck!
Straitlover- Sending you positive wishes for today!! Big hugs! You will do great!
Ally
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Hi Everyone! I am new to the board. My routine mammogram indicated only a 3-5% chance of cancer. My stereotactic biopsy, indicated DCIS and IDC of the right breast. I had a lumpectomy, sentinel node dissection, and oncoplastic reconstruction (reduction and lift) on both breasts on July 23. At this point, the doctors do not expect to find cancer cells in my lymph nodes and are expecting clean margins. I had a rough reaction to the anesthesia and pain meds, but am feeling much better now. Just waiting for the swelling to go down and for the pathology reports to come in.
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Hi PoppyK, and welcome to Breastcancer.org.
It sounds as though your
medical team is being responsive and acting properly to assess what they've
found, and that's a great. Hope your healing and recovery goes well.Waiting is not easy for reports and we wish you clear path results to nodes and clear margins.
Best wishes,
The Mods
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Mel - sorry for late response I had some other health issues - range of my motion is not very good yet, but I have not been doing my exercises as I should have, i had some issues with feeling extra weak and dizzy just after excercises to the point that older ladies from my meeting group would say ' hey seat down you look pale and wobbly ' and I did feel like crap, I do not know why have not solved yet, maybe low blood pressure... so I had slowed down with stretching
Belleb - I feel your pain, had same, no incisions issues just hated drains, was so happy to get them out on the day 7
now I am almost a month post surgery and as Ally can still feel the trace of drains under arms - but it is not bad. You will get thereAs for my oncologist consultation I was told I do not need chemo as nodes clean, no vascular invasion and IDC 2.5mm HURRAY, and that Tamofixen is optional for me, doc said he is not strong on me taking it and will be fine if I decided not to, he said that it will only change the statistic for me by 1.5% and that side effects are also around 1.5% risk so it balances. I have had check these online calculator and it shows same. Have still time to decide what to do, now waiting for appointment with cardio-onco since I have some questionable results from my echo
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kimag- great news about your nodes!! Woohoo! Glad you have time to sort out the tamofixen.
PoppyK- sorry you are here but glad you found this community. The ladies here are very supportive.
Ally
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Kimag - great news that you don't need chemo!!
Welcome PoppyK!
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Haha, saw your post above about valium before mastectomy. I "sort of" asked too (hedged my way around it) but they gave me the same info - NOPE. But I had to go down into the bowels of the hospital and get a "contrast" shot before the procedure. That stung. I would liked to have had something to calm me. But...I didn't get it.
As for healing and continued pain after mastectomy-I had only unilateral so my recover was easier than your bilateral. But I definitely struggled for a long time with "pain." I put that in parentheses because I'm not even sure I'd really call it pain after the first week (ish). I came home from hospital feeling fine. Difficulty sleeping and fatigue, but no horrible pain. I'd sometimes take a pill at night just so I could sleep. Yet, for quite some time after that I didn't feel like the weird "don't touch that!" attitude would go away. I thought my skin-on-bone chest hurt, but I think it was more a mental state. If anyone had said the feeling wouldn't be like any other type of would healing, and that it would take a long time, I'd be fine. But I just kept expecting to be able to touch it and I had a lot of difficulty.
Then I'd go into a dr. appt., expecting to cringe when they touched it, and it didn't really hurt. It was just - oddly numb. I found that MORE pressure was actually better than LESS. The soft breast prosthesis bothered me more because they moved and brushed, whereas the heavy silicone prosthesis stayed put and didn't annoy me as much.
Just throwing that out there in case you run into that. I'm 9 years out and it still feels odd to rub on it, but it definitely doesn't hurt.
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Welcome Poppy. This sight & the women are amazing. You will find so much support and information. It sounds like you are playing the waiting game now, waiting for your pathology report. It's a great time to explore breastcancer.org.
I love your name Poppy.
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I am a week out of my bilateral masectomy. I had two of four drains removed yesterday and my PS says I am healing nicely and he should be able to take out the remaining drains next week. That's a relief.
I am having a lot of trouble getting used to the fact I can't pick up my 21 month old son. It's so hard since I was pretty much the primary care giver. My H has stepped up. This entire situation is just so hard. Sorry I just needed to vent to people who might understand.
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Kellog - I have same issue with my 12 month old
cannot lift cannot take out from crib and it is hard as I was always the one... now 4 weeks after surgery he has learned to go to grandma or my husband to be picked up and once I noticed it I cried and felt not needed anymore and so on - sounds stupid I know but... it is so tempting to reach for him when he cries in the crib but I tired to resist it as I do not want to spoil anything with my healing, 2 more weeks and I can try to lift more. We have to hang on, and think about greater cause.Poppy - welcome
I feel relieved I do not need chemo. But then I wonder why others with similar dx were offered chemo, am I missing something important for what I will pay later... I guess once diagnosed with cancer it is hard to get a peace of mind there is always something to wonder about.
Becky how are you feeling ?
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Oh Kellogg my heart aches for you and your little one. I've wondered how a mommy is able to manage parenting and recovery. It will be better soon. Once the drains are out, you feel so free. (I had my last one removed today.) In no time, he'll be snuggling you. Then, shortly after that the doctor will tell you you can lift him. Take good care of yourself so you heal quickly. Come here to vent as needed. It does help.
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Kellogg- so sorry you are having to endure this recovery with a young child to care for. As Becky said, my heart just aches for you. However, I know you are strong and you will be snuggling with your son in no time. It will get better. Know we are herme for you!!! Big hugs!!
Ally
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Kellogg - so sorry to hear that you're struggling. I hope it helps to know that there are others of us who are going through the same thing and share your frustrations. I keep saying I just want to get back to normal, where I can do the simple things like get a glass out of a cabinet, wear regular clothes (not just button down shirts!), carry a package...I take solace knowing there are others who are further along in their healing who have been through the same thing and are letting us know we will get through this. Hopefully you will continue to make great progress and be able to pick up your son soon. My thoughts are with you!
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