June 2017 Surgery Group
Comments
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SBKH: so glad to hear you're done and home! I did my own drains half the time, and relied on my husband for a "good milking" at least once a day. Watch that calf pain... I'd be concerned about clots if it doesn't resolve.
illimae- the nail issue is probably my biggest Hangul as far as anticipating the SEs. I've started using OPI nail Envy (clear coat, has vitamin E) and tea tree oil on my cuticles. Hoping that does the trick.
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jenruns, my husband calls it milking too, lol. I think the nail problems were extreme in my case, it just kind of snuck up on me, most people fair much better or take better precautions, live and learn.
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SBKH glad you're home. Doing your own drains is not too hard. If you feel more comfortable having someone do it I'm sure they would love to help. It gets easier you move around as the days pass. I really did not like the drains. Mostly just annoying. I was not very good at "milking"them either. I could never get the fluid to really move much down the tube so I didn't even try.
Ouray, my MO wanted me in clear polish during chemo. I used tea tree oil mixed with olive oil on my cuticles and used OPI nail envy for a few months. I iced my feet and hands during chemo too. I did not have any nail issues. I got natracare cold therapy socks from Amazon that I used and just held ice bags or frozen water bottles in my hands. I also sucked on ice cubes or a slurpee during infusions. Whether any of that helped I'm not sure but I'll take it since I had very little side effects.
. As far as diet goes we need to eat healthy but if the only thing you feel like eating one day is ice cream then go for it. It's better than nothing my MO said. I did lose weight (which I couldn't afford) but everything tasted alright. Just less if an appetite for me. I'm sure some of that was stress related.
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Thank you ladies for sharing your experiences! You are all so inspiring and have helped me so much!
Tara17 - I love those quotes!
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I'm not sure if this has anything to do with each other or not but yesterday I got my expander filled and today my neck and upper chest area feel like they're on fire. Like if you had sunburn and your skin is all tight. It isn't sunburn though. Anyone else experience something like this?
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Thank you all for these posts - i learn something very time. I am looking for advice. i had lumpectomy, small DCIS and clear margins in may. after exhaustive research and options, Ive decided the pbmx. i am chek 2 positive and the cells were high grade. I'm 59 and made this decision, which i feel is the right one... can you help me prepare for the surgery? i am setting a date next week and it could be as early as end July/ beg of Aug. And my 88 year old mother was just diagnosed with terminal cancer and given only a few months - so I am living a surreal existence right now and trying to stay calm and positive but hard - all a shock - would LOVE advice to prep for the surgery, both emotionally and about pain - i am terribly scared of waking up in the hospital and feeling in shock...? does that happen and we live in a NYC apt (2000 sf) but I'm nervous how my daughter will deal with what im going thru... advice, welcome..thank you
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I had a lumpectomy on my right breast within 2 weeks of discovery. The whole process moved at such a fast pace. It was so nerve wracking to live through. The surgery was on June 22, 2017. I had horrible hives on my neck and chest from the surgical prep solution. It went away after a week and half of pure torture. Worse than the incisions! I am much better now but I am having a reaction of some sort on my healthy breast. Small red circular areas that are hot to touch with lumps under them. They are painful. Going to stay off work one more week to see if they will disappear. The red areas were looked at by four doctors (surgeon, 2 onocologists, and nurse practitioner) and they don't know what it is. They think maybe a sensitivity to something.
On my one week out from surgery appointment with my oncologist I was diagnosed with stage II-A with a 3 cm tumor with clear sentinel node biopsy and clear margins. I am 48 years old. My oncologist said I would benefit from HT treatment, radiation, and possibly six rounds of T/C chemo if my oncotype score was not low. Waiting on pins and needles to find out my score. The way she described T/C chemo sounded horrible. Very stressful, I didn't realize how serious breast cancer is! Life changing.
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Toughiebird
I am so sorry about your mom. I went thru something similar with my mom being in ICU a week after my surgery for five days. It's hard to focus on what needs to be done for you when you are so worried about your mom. I wish I could help you but I am not sure what a pbxm is, I am new to the forums. I just wanted to let you know that I am thinking of you and sending positive thoughts to you and your family
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hi touchiebird, so sorry u have to go through this and with what your moms going through. I went through something similar. I lost my mom last year then 4months later I was diagnosed with BC at 36 yrs old. Your gonna do fine during surgery. The pain is minor and definitely goes away with pain meds which I only used week 1.
Shockedat48, I did the TC chemo 6rounds. It's def doable. I did it with young children my youngest is 3. You will feel a bit tired for about 4-5 days following chemo then u will feel ok. And it's every 3weejs that it's given so u get a bit of a break. Good luck. Hope that score comes back low. Mine came back high that's why I ended up in chemo land.
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sorry about your mom touchiebird. It's hard to face that with a parent. Especially when you are going though a crisis of your own. The first few days after surgery are a little rough. Pain was controlled with Meds but it was hard to move around. Are you the sole caretaker for your mom? That would be tough. I didn't feel in shock when I woke up in the hospital. It was more relief that it was over. I was also very numb so no pain. I do remember being hungry after a little bit and being frustrated that i was on a liquid diet for About 8 hours. I'm not sure how old your daughter is but Im sure she will be helpful. If you are worried about her emotionally maybe your hospital has a kids support group she would like. My 17yo son hears everything and itis so hard. He is such a great help but I worry about him.
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touchiebird: sorry to hear about your mom... definitely adds a whole layer of challenge. Other than getting around slowly the first few days, surgery wasn't too bad. I took norco for a week or so, not even a huge dose. I actually thought the muscle relaxers helped more than pain meds.
To prepare for surgery, I trolled around on the boards of ladies the month or two before me. It was helpful to set expectations and get my list ready. Button up pajamas, a pillow for the seatbelt, etc. very helpful
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shockedat48--chemo is not as horrible as you might fear at first --- it's definitely a challenge and takes prep, but very do-able. Join a chemo forum for the month that you will be starting chemo and you will get support, read previous chemo forums to get tips . And most of all, what i did was read the survivor forum ---many ladies who are 5-6 and even 10-12 year come back to post and encourage . I got so much strength from reading the survivor forums
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Thank you so much to the sisterhood in this forum. You are all so helpful, supportive and great role models. Getting it out of my head and onto this is a great relief and gives me such hope and inspiration. i see the plastic surgeon this upcoming week on the reconstruction and then set a date this week. I am personally always better with a definite plan and I have been blessed that I do have 3 other siblings helping with my mom and I have a slightly feisty and assertive personality at times - so i never fear asking for what i need or challenging the medical profession for answers if I'm confused. The waiting period of test, results and diagnoses has been hell for me.With the check2, the medical profession just does not know as much about it - because the research and risk are so new - and there are 2 versions with different degrees of risk - so i had to dive in and do all my research these past 6 weeks on my own. A good lesson and I learned a lot and will have to keep learning, Terrified to have a colonoscopy and endoscopy just last week because my anxiety was so high - to know that was all clear - before my breast surgery and recent diagnosis of my Mom - but did it and grateful all ok down there! . TY to all of you so much. i welcome any experience, advice, thoughts and knowlege as i proceed along.
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Toughiebird I just wanted to offer my support. The ladies on this board are amazing and you will be well supported I'm so sorry about your Mom. It is so hard to let them go.
Shocked, I have not had chemo so I can not help but I really wants to offer love and support. I am assured by all that it is all doable but I hate that anyone has to go through it.
Does anyone have swelling anywhere? I have a soft golf ball size swelling right where my arm joins my torso. Is this normal or the start of lymphedema? As a diabetic they say I am at higher risk but hopefully it is just post op swelling.
Enjoy The Weeknd as best you can. We are on the road to health.
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SusanGA- I second that. We are on the road to health! Best to call your doctor about the swelling --that said, i did have quite a bit of underarm and side swelling ( painless ) which they told me was postop and its going down now
SBKH--thinking of you and sending good wishes your way. How is your drain management going ?
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Shocked, I had 5 months of neoadjuvant chemo and found it much more tolerable than anticipated, I worked (except on chemo day) and even completed my first ever 5k walk. Tell your MO about any side effects and if they're too bad ask about alternate meds or reduced dosage. And being bald isn't so bad, I found it kind of empowering and people are so nice, milk it for all its worth, lol. (Made my own bald Bitmoji below)
Susanga, if your swelling is a specific shape, could it be a seroma? Are you able to email photos to the doc or nursing team? I'd mention it soon.
SBKH and Ouray17, you ladies doing ok?
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Hi SBKH and everyone in this group.
I was recently diagnosed with breast cancer in April. On June 28 I had a bilateral mastectomy with space savers for my reconstruction surgery. Never in a million years did I ever expect to find myself here. I have great family support and friend support. But there are times when I feel so alone. Since surgery I cry a lot and worry constantly. I was just told that they found cancer in my lymph nodes on the left side. I will have to have radiation and chemo. I'm not sure on this because I have to still make my follow up appointment.
The recovery from the surgery was hard in the beginning. I did as the doctors said and took my pain meds and antibiotics as prescribed along with my Tylenol.
Right now the drains are really a big pain. Can't wait to get them out. Does anyone know if this is painful? Once that is done they told me they would take out the air from the space savers and start to fill them with saline.
My biggest problem is trying to find clothes to fit me. I literally break down and cry when I have to get dressed.
It's so nice to hear the stories for all you ladies know that we share so many things in common.
I just hope my crying slows down some, I can start to feel good about myself and I can find some good people to talk to.
Care, love and happiness to everyone.
Carol
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pixiegirl it is so normal to grieve. I find that late at night I start to thinking and it often leads to tears. The grieving process takes as long as it takes. That being said, sometimes we need to talk to someone. There are so many good support groups and counselors who deal with this specific thing. Most oncology offices have social workers who are there to talk to. This group will be invaluable as well. We are all on this journey together and we will get through. The road has several hills for many of the gals but we will eventually achieve good robust health. welcome to the group. We all understand.
Illimae, they drained my seroma last week but it did not affect this spot. I have an appointment Monday morning so I will have her look at it. I think I worry about swelling because I am fairly obsessed with lymphedema. My Aunt developed it after breast surgery and it made a huge impression on me. I vowed I would nip,it in the bud if I got it.
SBKH I hope you are up to,posting again soon. Sending love and support
Thank you to all of you for being so amazing. I did not think i would be dealing with this in my 70's. I kind of thought I had dodged the bullet. It has been so,helpful to be part of this group. XXXOOOO
I
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Pixiegirl; Thank you for your post and how honest and real this all is. I offer all my support and understand the feeling "how did I get HERE"! But keep crying - its a good release. I cry all the time and truly believe it lets our feelings renew themselves... then I TRY and laugh when i can and usually panic if i feel too alone and try anything, anything to reach out to connect to someone or a phrase in a book or a line in a movie or a song I love (this community helps)... and nothing stays the same so you're admirable to move through this and keep going. That's why we women are built to be strong and compassionate and ever evolving. All good energy and light and love coming your way to you and everyone here.
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Hi Pixiegirl23, I am sorry to hear that they found cancer in your nodes. I have not had chemo, so I cannot speak to that. I have had radiation and it was not bad at all. I wanted to let you know that I had one of my drains taken out yesterday and it was a breeze. I was scared to death, but it was no big deal. I am sorry you are sad and crying, but I think it is better to let those feelings out. It is great news that you have good friend and family support. You should consider adding a counselor to that team. I did with my first dx and it was very helpful. I am praying for you.
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Hi SusanGA, I am fairly obsessed with lymphedeema myself. I went to a lymphedeema specialist prior to surgery because I wanted to be fitted for a compression garment so that I could nip it in the bud if it showed up. She explained that swelling in the first six months post surgery is not lymphedeema, she completely put my mind to rest on this issue this time around. Once I get cleared for PT by my PS, my PT will monitor me for the condition. Having said all of that, I would still mention this at your appt Monday. I hope this makes you feel a little better.
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Pixie, I was paranoid to get my drains out too. I had the same question a few pages back. I got myself all worked up about it but really it wasn't bad at all. I did take a motion before my appointment though. I think we are just so sore that the thought of anyone touching us at this point is nerve wracking
...and it is a blessed event when those drains are out. They are just annoying. I feel so much better now.
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May I ask, what is the scary part about getting the drains out? i need to prepare for everything and learning so much with every conversation... thank you
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the scary part for me was the thought that someone was going to be pulling 6-8 inches of tubing out of my already tender chest. It really did not hurt at all. Mine were taken out by the assistant not even the doctor,
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iGL thank you so much for the information. It really did help. I will of course mention it to my surgeon. I'm really glad to hear that it is probably post operative swelling.
I did not have any trouble with having my drains pulled. There was no pain. I hope it is easy for all of you
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Hi! I too was scared of drain removal as i had read it hurt . I was already so tender with the tissue expander that i didnt want to face anymore pain. I took tylenol and diclofenac one hour before --the doctor didnt even see me that day, only the nurse--she pulled out the drains and i didnt feel anything! It didnt hurt at all. If you want take your pain med of choice one hour before ; but i dont even think thats really essential . So dont worry about drain removal anyone
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Can I ask how many of you that had MX or BMX can raise your arms straight above your head? I am doing better with my left arm - not full range for sure. My right arm is very stiff and I cannot raise it as high. I thin I have minor cording as the inside of my arm hurts. I keep trying to stretch but I'm concerned I won't be ready for radiation is a couple weeks.
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All
I'm sorry I've been absent. I've been feeling upset that I'm bored and in pain and mad that cancer is wasting my summer, mad that I don't feel like myself and sad that I can't tell if I'm healing normally. I feel okay except for swelling in armpit and pain from drains. Plus the tube hangs to the top of my thigh no matter how high I pin the bulb. I'm not sleeping enough and I'm just out of sorts. I want to feel grateful and I want to praise God for getting me through this. But I think my serious case of the grumpies is just tanking my attitude. I can't wait til I feel more pleasant and more like myself! I can't wait to have big bear hugs again and go for a run or a bike ride. Can't wait to drive myself, too! Guess I need to learn joy in adversity and patience.
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Legomaster, I had a bmx with left nodes removed... still can't shave under that arm (hair loss will be my friend there!) and can't raise it all the way up. My right is pretty much back to normal. (BTW, I'm in Michigan too... metro Detroit area.)
SBKH: Hang in there... grumpy is a valid mood
once your drains are out, hopefully you'll be back at it.0 -
SBKH --glad to hear from you! And glad to hear that you are progressing normally -grumpy, angry, are all par for the course. I went to mastectomy two weeks after chemo ---boy, was i tired. Still get so tired at end of day. It is frustrating to not be myself, the normal me can go a mile a minute . Now i am barely out for two hours and feel this intense exhaustion . Have shed many angry tears at the way i have been punished --no hair, thinning eyebrows, no eyelashes, had to choose between radiating myself or mastectomy,periods have stopped for now, nails affected by chemo, ghost like skin with dark patches due to chemo on my face ---all that one considers feminine has been affected .I am single too --so now how does one disclose this journey one day to a new man ? But it will be a litmus test --those who dotn accept me would never have made it for the long haul of life anyway. Those who can see the inner me will be the right people for me. And i believe tears clear the way for better feelings.
Lest i sound negative, i am feeling relieved that i have done my part to face this BC, i picked experienced doctors i trusted and have done everything they have asked of me.
then i have started putting on a performance --wig, make up with bronzer, eyebrow pencil, dramatic , eyeliner , the right bra for my tissue expander,( the breast i am creating with my tears and pain is more mine than the old one is ) , a flowy dress and no one can tell the difference but me when i am out --and then i feel i am the same person inside --saying the same things, laughing at the same things, still the same tastes and interests --and i wonder about life and our roles in it . As Shakespeare said " all the worlds a stage, and all the men and women merely players, and one man in his time plays many parts".
So this BC is a part to play for now . And then we will all go on to be old ladies and look back and shake our heads that we ever faced this.
To us ladies, i raise a glass of green juice to toast our healing and our determination in facing this path!
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