January 2014 Surgery Sisters

[Deleted User]

hello all,

After starting chemo in August for a recurrence of bc I am now ready to begin preparing for and discussing my January surgery plans. I would appreciate your company on this journey. For me it will include bilateral mastectomies and bilateral axial dissection. I've asked my surgeon for a completely flat surface since I've chosen not to have a reconstruction. (I want to be able to get clearer scans in the future and recon at my size I offers more limited options). What are you doing to prepare physically,emotionally otherwise ? I hope to begin exercise to help get my pecs in shape.

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Hi HVV,

I will also be having a bilateral MX without reconstruction. My surgery is set for Jan. 13th. I was diagnosed in May and have been through chemo. I have been told to get myself ready for surgery by increasing my protein and walking. I am sure there are many other things I could be doing, but I have been trying to regain some strength and stamina. Please let me know what you are doing to get ready. Thank you for starting this thread as I was feeling a bit lonely without any January sisters!

[Deleted User]

Hi SGC,

I'm glad that you found me. It has been lonely. I am still doing chemo so doing anything but going about my daily activities is very challenging. (I'm still working.) I am trying to get to the gym once or twice a week - had stopped with my dx as time and fatigue became an issue. I haven't heard anything about protein. I hope to start working on my pec muscles at the gym and using the stationery bike to get close to where I was before the dx. Will you have axial dissection as well? nodes out that is?

I am going to invite folks from earlier months to drop by and give us advice in anticipation of having a larger January group. I am especially confused about length of time needed to recuperate. I've hear 6 to 8 weeks but also recently heard 3 weeks. Not sure what to expect.

All the best,

V

aviva5675

Someone on Nov thread asked about getting ready..here are some thoughts, hope it helps:

I took stuff to the hospital like my tablet, and never used them. Didnt bother with slippers, wore the socks they give you.

-- by the second day my hair was gross, I jokingly asked nurse if there was something they could do--- she brought a shower-cap-hair-washer---what a marvelous invention. Put it on my head, massaged for a few minutes-took it off, my hair was wet and clean. Brilliant!!!

Have a small pillow or sweatshirty thing to hold to your chest on ride home. To cushion the shoulder seat belt. or, I rode in the back, with lap belt.

Have things on counter at home- you wont be able to reach up. Have bottles open, etc, or hopefully a helper for a few days to reach and do things for you. You wont be able to lift even a coffee mug, let alone a full one, for a bit. Have paper cups or I used a light weight rubbery commuter mug for awhile.

Have your helper help you up from bed-- put their arm behind your back and shoulders and lift you up, then you can swing legs over and get out of bed.

Have tons of types of pillows to make the best nest for you. Behind your back, under your arms, maybe under your knees...all to help you try to sleep. Itll be back sleeping for quite awhile! Some people swear by recliners.

Fill your pain prescription beforehand. Youll want it when you get home.

Ask about any arm excercises you can start doing and when. Ask nurse how to strip your drains. Take colace or miralax stuff even a few days prior-- all the pain meds will make you really constipated.

Read the threads about getting ready for surgery.

Have button front shirts to wear for first few weeks.

If you cannot shower til drains are out, have a plan for washing up- maybe get a type of wipe or butt washer cloth thing to be able to wash with. Your helper will probably have to help you at least for a few days.

Ask the dr or- I ended up putting some gauze pads taped over where the drain tubes exited my body. Dabbed a bit of neosporin there also. Felt more comfortable even psychologically, having that area covered and not against my shirt. Also pinned it (around the tube), a few inches down from there to my shirt, and then put the bulbs in the drain belt pockets...so they were dragging least possible.

http://www.community.breastcancer.org/forum/91

ok that didnt work as a link, but Its for the--- surgery before during and after thread, which can be found easily, go to: all topics and its in the tests and treatments section. Theres a ton of great info in that thread about the whole surgery process.

myers421

January Sisters,

first of all I know you are nervous and scared about the surgery but let me reassure the worse part is the drains you will have hanging from you after surgery not the pain. In my experience pain was zero your surgeon will take care of that trust me!

I told my DH just after my exchange 4 weeks ago that If I were to give any advice it would be to appreciate you sleep position because it will be awhile before you sleep the way you want to. I was a side and tummy sleeper and I JUST got back to that 2 weeks ago (my bmx was in July).

My surgery was on a Thursday and I was released on Sunday, I took my nook with me I thought I would read however, it came in handy when I couldn't sleep I listened to "relaxing waters" station on Pandora in fact I listened to this station OFTEN when I couldn't relax and it helped my EVERY time I highly recommend listening to soothing music.

I returned to work at about 5 weeks post op I thought I was ready after 2 weeks but that was the Percocet talking LOL! I drank alot of water, drank Ensure for protein and ate fruits and veges to help in my recovery, I was blessed with no complications.

Every page of our lives has a purpose and every chapter in our lives builds our character.

Much love to all of you relax... breathe it will be over soon.

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Hey HVV,

Yes, I will have nodes removed. I found out at the time of my dx that it had spread to my nodes. I am still having Herceptin infusions every three weeks, but finished chemo four weeks ago. Starting to get my taste buds back!!! Yea!!!!

I had a breast reduction in 1988 and had drains. They weren't too bad, more of a nuisance then anything else. I found diaper pins worked well for pinning them out of the way, but that was before all the new shirts with drain pockets! I vaguely remember using shoelaces in the shower to keep them from getting in the way.

My surgeon said I would only be in the hospital overnight, which works well for me as I do not sleep in hospitals! Way too noisy and someone is always waking me up for something. My DH will stay with me overnight to make sure my needs are met and I am comfortable. (He is a retired firefighter/EMT.) Our kids are grown, the three elder ones have children of their own, so we don't need to be at home. In fact, the 20 year old will be in CA until the day after my surgery as her spring semester classes start up that week! I have gained a bunch of weight since this all began and am a bit worried that I will have weird incisions after I lose the weight. However, I am getting ahead of myself!

I can't imagine working throughout chemo, let alone going to the gym! You amaze me! I only lasted three days at work after chemo. I was barely making sense, repeating myself, and so totally exhausted! I teach and resting was out of the question! The kids were great, even suggested I put my head down....not that I would ever consider it! My dual enrollment seniors were marvelous, but I just couldn't keep up! I have been out since September and miss everyone very much.

I have been told that recuperation time varies from person to person. I made a huge mistake and did too much too soon when I had the reduction. Consequently, I tore my incisions and made a good plastic surgery look awful-much like a rag doll! I will not do that again. I too have heard of people going to work after three weeks, but I think it depends on several factors such as your job, what was done, and the person. You sound like you are in great shape so you might heal quickly, however I think you might want to see how it goes. I don't expect to bounce back very quickly as I am in awful shape and I am still trying to regain some stamina. I still get exhausted just going to the grocery store!

Having people who have been there drop by is a great idea. Have you checked out the other thread for those of us facing surgery? I cruise the boards for info all the time. So much to learn from those who have been there! Sorry to be so long winded tonight. Hope you are doing well. Susan

aviva5675

I just read somewhere here that if the dr doesnt open the drain bulb to release pressure before removing the drains it will hurt alot. Have seen a few women post how much it hurt to remove them (mine were fine), so I wonder if thats what happened to them.

[Deleted User]

Thank you all!!!! I appreciate those pearls of wisdom.

Susan, I am not in good shape. in fact I am very fat - really. I am a college administrator and try my hardest to do everything that I used to do in my work and off work life. It is not easy. I'm grateful for your wordiness. ; )

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Good evening HVV!

Only another person in education could appreciate my wordiness! (Darn high school English teachers never stop talking!). Since neither of us are in good shape, we could get into "some what better" shape together! I still haven't started walking, although I did clean today (which has to count for something). What do you say?

Susan

maureen1

HVV...saw your post on the March 2013 Surgery Sisters thread so I thought I would weigh in...I know how you feel, waiting for surgery was a very scary time for me. I was going thru chemo before surgery so I felt kinda worn out and I was afraid of what the pathology report might say. First, let me reassure you that as bad as it might have been this time last year...I feel great now and am doing well - both breasts were negative for any cancer cells in the pathology - the chemo did it's job!

I had my BMX on March 4th. I stayed one night in the hospital but by noon I was ready to go home to my own bed...I had 4 drains and they were the worst part of it for me. I had a burning pain at the drain sites and in my chest - I used ice almost nonstop on both sides and I took my pain medicine on a schedule without waiting for the pain to "get bad" - that seemed to help. I milked the drains twice a day to keep the fluid out of the area and avoid a seroma (fluid build up). I went to the medical supply by the hospital before surgery and got some drain gauze (it has a split in it to go around the drain tube), and some sheets of dressing material that helped to cover the drain openings over the gauze and hold the tubes in place, keeping them from moving around made them less painful. As others have said, I had lots of pillows to prop myself up - two behind my back, one under each arm and two little ones to snug against my chest when I moved around or tried to get up. Some of my surgery sisters rented recliner chairs to sleep in and they felt like that was more comfortable but I did okay propping up with pillows.

I had some zip up fleece jackets and sweat shirts that worked well for me when the dressings and drains were in place. Also a post mastectomy camisole that had velcro down the front and drain pockets on both sides, and a couple button up shirts so I didn't have to lift anything over my head - they told me not to raise my arms over my head while the drains were in but I did make sure to move my arms around - rotate the shoulders, etc. so I kept my mobility and didn't get frozen shoulders.

As for showers...I could not shower til they took the drains out and that was 2 weeks - they had to be draining under 30 cc a day to pull them...so, my husband put in a hand held shower in our bathroom. I could start the shower with the hand held hanging down - aimed toward my legs and then get in to the stall. Once I was in I could direct the water wherever I wanted without coming near the drains - I hung them on a clothes hanger from the bar on the shower door. It felt great to be able to wash up:) I was able to bend over and wash my hair in the sink.

It took me a couple weeks to feel like things were getting better - really it was when the drains came out - but even in those first couple weeks I was able to go out for walks. I was careful not to lift anything more than a coffee cup or water bottle for those first couple weeks since my pec muscles were cut for reconstruction. I couldn't drive - backing up the car was tough - something about that position didn't work for me until about 3 weeks post op when I started driving and went back to work.

Feel free to contact me if I can answer any other questions...I wish all the best for the sisters facing surgery in the next few months...(((Hugs))) Maureen

TessaW

I'm in tears as I type this. The last few days have been AWEFUL. My BMX is scheduled jan 7th. I'm a single parent and don't know what I'm going to do.

My bf of 2yrs broke up with me two weeks before dx.

My son is only 9 and pretty dependant on me. On top of that I have cerebral palsy. Who's going to cook? Who's going to wash my hair? Grocery shop? Do laundry? Clean the house? Shave my legs and >>>>?

Ugh, I'm so frustrated and angry and no one understands. It's like they think if they tell me one of their issues I should feel like we're the same. UM, NO> YOU can still wash your own penis and lift a frying pan. We are NOT in the same boat.

UGH. I met with a ps once for a half hour. The bs hasn't told me much other than MX is necessary, I'm ER?PR+ , stages 2 &3 and it's on the 7th. Shouldn't I know more by Now???

girlstrong

Tessa...your situation is one that warrants assistance. Have you told your BS about your predicament? Have you been referred to a social worker? There are community organizations and programs that you may qualify. Reach out to the Nationsl Cancer Society that is in your region, they have volunteers and can surely point you in the right direction. Please feel free to private message me if you would like; you dont need o go through this alone.

[Deleted User]

Tessa, I am so sorry. Girlstrong is right there are resources that can help you including the American Cancer Society. Please do reach out to them.

Susan, Absolutely. Let's plan on that. I am finishing up chemo in 8 days!!!!! soon after that my taste buds will be normally I hope so that I can eat more healthfully and start moving around and not feeling so exhausted.

V

SC60

HVV,

Glad to hear that you are almost finished with Chemo! My taste buds are still off. Still looking forward to a good cup of coffee! In the meantime I am trying to get off sugar! Not easy at this time of year, but imperative I do! Life is a bit crazy right now as my FIL has stage 4 lung cancer and is now having palliative/hospice care. DH is not doing well and we are trying to help MIL and family. I also received a call from work saying my 30 day extension was approved, however that will only take me to two weeks after surgery! Someone suggested I go out on disability. That would mean I lose my job and I don't know if I could find another one when this is all over! When it rains it pours! I am exhausted! I hope you have a restful weekend.

[Deleted User]

Oh Susan, so sorry. Is there anyway for you to consult your union or an employment lawyer before this goes further? I know that in my area NYC the local breast support entity offers occasional meetings with these types of experts. Hang in there but by all means do get advice on the employment situation. You are going through a lot and don't need any additional stress.

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Hey HVV,

I knew I liked you....NYC, huh? I am originally from LI, but have been down here for 31 years! VA is a right to work state (commonwealth) so no unions here, well not for teachers. We have "associations" which are pretty meaningless in some areas, like mine. Legally, I either go back to work, file for another extension- which they do not have to give- or go on disability through the VA retirement system. I'm going to file for disability since my job isn't guaranteed any way. At least I will have some money coming in (I haven't had a paycheck for quite sometime.). It's all good.

Hospice came to talk with the family today. I am very grateful for the help they can provide. It should make things a bit easier for my MIL. DH is spending the night there tonight. It will give my SIL a break as she was there last night. I am pretty sure they will rotate nights so Mom doesn't have to handle anything alone. I am exhausted! I really need to try and take care of myself through all that is going on. I am concerned that I won't be ready for surgery. I am hoping to walk tomorrow morning! Wish me luck!

Susan

graceb1

I too will be having surgery on Jan. 8th. I just finished chemo on Fri. and still have to fight my way through all those side effects and I have a bunch. Can't wait to get some taste buds back as I've lost 30 pounds so far. I could lose more LOL but I'm weak from not eating enough. Fighting to get into better health to heal faster after surgery. A cup of coffee sounds devine but tastes terrible. I'll be checking as often as the chemo brain allows and hope to get some good tips on how to get through this next step.

[Deleted User]

welcome Grace. You'll be ahead of me for surgery so I'm really looking forward to any words of wisdom

Best, v

lighthouselady

Hi ladies! I followed HVV over here from the Sept chemo group. I just had my last of four taxol treatments Thursday (had 4 AC before that) and am scheduled to have bilateral mx with tissue expanders on January 3rd. I am BRCA+ so a unilateral wasn't an option. I will also need to have a hysterectomy but the gynecological oncologist wasn't available for surgery that day. That will most likely be done down the road during one of my reconstruction surgeries.

I'll have radiation after surgery, so any reconstruction will be months and months down the road. My PS doesn't think I have enough of my own tissue anywhere to use for recon (unless I want to go from a C cup to an A cup, which I don't). I'm not exactly a skinny girl, but I guess I don't have the excess in the right places. He said we'll talk about it later on when it gets closer to the time where recon can be done.

I've never had any major surgery, so I'm trying not to get too nervous about this. I've read through some of the surgery threads, but sometimes reading through all of that freaks me out more than anything! I do appreciate the tips and advice from the others who have been there, done that, though.

I am going next week for post-chemo mammogram, ultrasound and breast MRI. Hopefully they show nothing but dead cells where the cancer was! I will also meet again with my breast surgeon and PS to discuss the surgery in depth.

For those of you having bilateral mx, has your surgeon discussed the option of a sentinel node biopsy on the prophylactic side? I'm torn on this. My BS wants to do it, but none of the scans after diagnosis showed cancer anywhere other than the one breast and one node. I had CT scan, bone scan, breast MRI, brain MRI, and PET scan. I really feel uncomfortable messing with nodes on my good side with no indication that there are cancer cells there (especially since I already had 8 chemo treatments... if there was anything there, surely it's gone now!) .... since I'll already be losing the nodes on the cancer side, I'd like to keep the other ones intact. Advice?

[Deleted User]

as this is my second time around I'd go for the snb Michelle.

[Deleted User]

Hello All,

Thank you for all your support. I just completed my 12th Taxol on Wednesday and now am dealing with all the usual side effects. I will have surgery in mid January. I received the news that the ACT with taxol weekly x 12 effectively RESOLVED all known areas of concern. I am still going forward with surgery and will gladly join the flat and fabulous group. I want to ensure that it is easy to see any new developments. V

FTell001

Surgery for me was Nov.7th. I was so anxious about this and couldn't imagine how I would feel afterwards. I had bilateral with node removal on the right breast. I can't really complain of a lot of pain though I did NOT have tissue expanders as my surgeon and Onco doctors said NO to that as I am going to have to have radiation. I spent one night in the hospital. My breasts were DDD's and there was 11 lbs of tissue removed. I was on pain relief by injections that first night and the following morning on oral pain relief. I have sensations like a severe sunburn on the lower inner aspect of my right arm..(node removal side). Usually in the evening it gets worse so I take a medicine to relief the discomfort and usually around bedtime to help me sleep. I came home with 4 drains which were removed about day 8. No pain was felt on removal of these drains.

I don't want to do reconstruction. My only option in Tram flap now and I don't think I want to deal with all that goes with that surgery. I don't mind being flat. I do have the huge balls of skin beneath the axillary area which I have heard others on here comment about.

At this time, the "tight band around the chest" feeling is decreasing. I have full range of motion of my arms without loss of strength. It took a while to get to this point as I initially had shooting nerve pains when I tried to position my right arm across my chest. I've learned more from this site on what to expect then I ever got from the medical staff involved in this. If you haven't beet through it, I suppose you just don't know of all the feelings.

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Happy Saturday January Sisters!

I disappeared for a short while because my FIL's battle with lung cancer ended on December 7th. It has been exhausting and very sad for our family. Started walking today! Didn't get very far, but plan on walking again this afternoon. I am trying to eat better in spite of the holidays and hope to be a bit healthier for the surgery! (I have put on too many pounds since my diagnosis!) I am also increasing my protein as my doctor ordered. Getting ready for Christmas is keeping me busy, but I am still finding myself getting anxious about my surgery. I am very impatient and just want to get passed it. How are you all doing? Susan

graceb1

I guess I should introduce myself a little more. I'll be having SMX, lymphs, port removal and TE placement on Jan 8th. Right now I'm still fighting the SEs from my chemo on the 6th. I hope hope to start eating again soon as I've lost close to 35 pounds so far (need to lose another 20 LOL) and really don't feel fit enough for surgery. Just walking around the house exhausts me. I really need to get more protein in but nothing tastes good and my gut tells me not yet. Every day is a struggle but at least there's no more chemo. I have no energy for Christmas which is getting me depressed. Usually I bake up a storm . This year I'm just shopping on-line and calling it quits. With the neuropathy in my fingers I can't even wrap the presents. I'm not too stressed about the surgery, had a couple before and survived. My best piece of advice is to take the pain pills when you need them. They're there for a reason and you'll actually heal faster if you're not in pain. I am stressing over the thought of being tied up with appointments for 6 straight weeks with radiation. I keep telling myself to take it all one day a time. Really ready for this all to be over. Had a friend die of MBC last night after a long battle which isn't helping.

Warrior_Woman

Hi Everyone -

I'm popping in from the December surgeries group to say hello and try to offer reassurances. I was absolutely terrified of my pending BMX. Ten days out today and I walked 4 miles on incline, minimal meds. and having drains pulled on Monday. I expected I would be on life support but it honestly wan't that bad.

Aviva has offered a ton of great information.

Tessa - The hospital social worker will be vital to your aftercare planning. Please tell her everything and don't be afraid to really emphasize all of your needs and concerns. I do not have children and yet I have professionals visiting my home everyday. Frankly I don't feel I need them anymore but it is reassuring. I live in a very rural area. The supermarket is 25 miles away. And still they've managed to get me more in home care than I need. If you feel better, call the social work dept. of the hospital in advance to get them moving on what you'll need. It will be OK.

Art123

HVV,

Saw your news re taxol AC worked well, that's awesome. I also noticed you are from/near NYC.

My wife has 3 more AC left with surgery likely BMX (she us her2+) in mid to late February.

She is being treated in NYC. Curious as to where you are being treated? Can you PM me?

2nd_time_around

HVV, saw your invite on July 2013 thread, not knowing where to start! I'm a bit of an anomaly, two different primary BC's, not a reoccurrence. Yes, I wish I got those odds on the mega lottery! So, I've done this journey twice, so ask away. Won't claim to be an expert, but let me tell you something interest: I'm the biggest wimp, have a true phobia about needles and pain but there are ways to get thru that too. 3 surgeries in about 9 months.

Art, you have my respect being here for your wife! You can be such help to her. Wishing my DH (usually meant as Dear Husband, but there are other not-so-nice meanings, if you get my drift). It helps both of you going thru this together.

[Deleted User]

now that I have a date, I'm getting scared. I was so confident and clear before. Crap! Anyone have suggestions for getting over this? V

2nd_time_around

HVV, my suggestion is to look beyond the actual surgery. Do you know what's the stress about? For me I was phobic about needles and procedures so I would take a Xanax the night before and day of the procedure, I wasn't driving so I was very compliant. For the needles fear, they used a J-pen like they do for kids as well as baby needles when appropriate. Knowing I'll be woozy, I bring pre-printed lists for surgery days: one each for the nursing staff (medications, health/surgery history, IV/needle fear, PONV, whatever I would tell them - in written form in case I'm too out of it), one for the anesthesiologist (history of post-op nausea and vomiting and what worked/didn't work previous times, I have problems fighting off the gas they give me....) and one for my PS (we've already reviewed the list, it outlines my preferences and also a copy of anesthesiologist info). So its all clear to everyone. Keep your mind busy days leading up to the surgery. Wear loose fitting clothes to surgery - sweat pants and button up front shirts (will be difficult raising your arms especially with drains). For after my surgeries, I had front, button up shirts and pj's. Lots of baby wipes when you can't shower, dry spray shampoo. Drink lots of water post surgery even if you don't eat much (and, yes, stool softeners and laxatives may be necessary, whatever your medical team suggests). I was difficult to wake up after surgery, we've learned grape juice or Popsicles (the sugar) wakes me up faster. Oh, and blankets, I didn't hesitate to ask for lots of warm blankets for both pre and post surgery jitters and chills. Don't be afraid to speak up,these people are there to support you.

And if you want to score HUGE points with your PS, I wrote a nice letter to my wonderful PS thanking her for all her concern, professionalism, understanding, support and care, put it in a thank-you card and handed it to her just prior to surgery when she was marking me up. Caused a tear or two, she said no one had done that before, you can bet she went into surgery with an uplifted spirit.

Sorry this is jumbled, I'm still half asleep. If you have any questions or fears, bring 'em on, let's get them cleared up. And there are some threads with pre-surgery tips, you can search for them. I'll try to copy/paste on this iPad, not always successful.

NRB

Wow! So glad I came back & checked this site. I'm scheduled for double mx 1/8 w/no recon. The posts are already very helpful...& I'm sure will continue to be as date nears. I'm keeping distracted w/ workouts, cooking (freezing stuff), etc. Mostly just taking good care of myself. Organizing some friends for post-care...& some fun outings. Seeing a therapist 1x week. Thinking of doing the plaster cast art thing. Funny...all of it seems extra overwhelming w/ the holiday frenzy. My partner will be in sunny FL for holidays. I'm choosing home alone, quiet...& all that. I feel ok sometimes...& really sad also. Days slip by...really focused on countdown now. Looking forward to continued correspondence here (:

2nd_time_around

wish I would have done the chest cast thing, they didn't do those back then. Also, if BS doesn't, you might want to take a couple "before" photos (chest only, no face or identifying jewelry), you can always put them away but you can never go back. I didn't do it because, photo developing was so different back in 1996, too many prying eyes.

If you have a recliner, you might plan on making that your bed and nest for a while. I lined mine with a sheet, for a more bed-like feel. It's difficult and uncomfortable lying down, lots of pillows help. When your ready to sleep in bed, I found a wooden chair placed with the back against the side of the mattress helped me pull myself up, like the rails on a hospital bed. Loose button-up the front shirts (I used some of DH's old shirts), I pinned the drain lines thru the button hole. You might also want to find out if insurance covers post-surgery camis; if so try for 2: one to wear, one to wash. These usually have pouches to hold the much-loathed drains.

Take any assistance from friends and loved ones they usually want to help, let them. You will see the mantra "just because you can, doesn't mean you should." Commit this to memory and follow it (I made the mistake not to do so).

For those of you with children, get them involved. Assign little "special" tasks they can do to help you: depending on age, like made you a cup of tea or toast, rub your shoulders or feet, but let them feel like they are helping you in your recovery. My DD wasn't yet 3 when I went thru mx (she's almost 20 now), her favorite thing to do for me was to make PB&j&S (sprinkles) sandwiches. I couldn't lift her so I would sit on a chair, recliner or sofa, she would climb into my lap. Kids are adaptable and resilient.