Surgery on 1/12/16 - some questions

woodstock99 · December 2015

Sorry if these have been answered elsewhere but I am getting very anxious with my surgery 2 weeks away and limited time for planning except for the rest of this weekend and next and while I have found so may posts here extremely helpful, what I can't see to find a lot of info about is what does one actually do for the 3-4 weeks that you are home post-surgery.

I am having DMX & SNB on 1/12/16. I am not doing reconstruction. Right breast - 2 areas of DCIS. One is grade 2-3 solid w/comedo necrosis & calcifications. One is grade 1-2, solid and cribriform w/cancerization of lobules. Left breast - 2 areas. 1 invasive ductal cancer w/lobular features, grade 1A less than 2mm & DCIS, grade 1 to 2, solid and cribriform w/cancerization of lobules. ER & PR Positive. Her2 Negative. Told growth rate is 5%.

Doing a lot of prep though through all the wonderful suggestions on this site and friends who have had surgery before - have my shrine of surgery & post surgery items building up in spare bedroom. Have been fitted for post-surgical camisole with drain pockets, etc.

Having pre-op tests (labs, EKG & maybe chest X-ray) & meet with anesthesiology on Tuesday, 12/29 so maybe they will provide some guidance. I am getting SNB day of surgery. They ad they will inject dye at 7:30AM but I can sit with my DH until 10 when they will take me back for scan and then into OR for surgery at 11. What is this wire thing I read about?

Any special questions to ask when I go to pre-op this week?

I know that you are supposed to walk but not do much else when you get home and that everyone is different in terms of recovery but not to overdo it.My husband will need to get back to work. Most all my friends work so not expecting to many weekday visitors. Will I sleep a lot? Does it depend on level of pain.

How soon might I be able to work from home on my desktop? Do I need him to get lunch and drinks ready for me and put in a cooler before he leaves. Will I be able to pay bills. Should I be sufficiently back to "normal" by late Febuary to visit my mom and get tax prep ready?

I have post-op check on Wed 1/20 with surgeon but also 1st appt with medical oncologist, I worry this is too soon after surgery, Why so quickly?

My surgeon recommended having our dogs boarded so they are not trying to jump on me or get in or on the bed or carry any bacteria. Is 2 weeks enough or do we need to wait until drains are all out.

I work 10-12 hour days and take care of DH and mother-long distance so I am always the caregiver so this is big role reversal for me.

I usually get a massage every month or 2 with a wonderful therapist who does lympathic drainage, When can I start this up again? Sorry this is like stream in consciousness with things that just pop into my head. I know I will probably have mire questions and hope not to bother everyone too much.

I am torn between knowing this is the right thing to do after diagnosis and not really having a choice except choosing no reconstructions but I am getting terribly scared and feeling like my life will never be the same again after my surgery and that is freaking me out.

It'd be great to see something represented in a time day format from day 1 surgery for next 4-6 weeks. Kind of here's what happens and what to expect.

Also did many of you create a Caring Pages website or something similar? I had read about LotsaHelpingHands that has a calendar feature where friends can sign up to bring meals etc but link does not seem to work now.

Thank you all for being so helpful and giving of your time and emotions to share with this community. This site has been an amazing resource.

badger · December 2015

hi Balthus, sorry you're here but glad you found us.

I had bilateral mastectomy with sentinel node biopsy in Feb 2010. Didn't have reconstruction so was in hospital two nights and got drains out after a week. *TIP* when the doc pulls your drains, make sure s/he opens the cap on the suction bulb!

Took two weeks off work (desk job) and rode in with a co-worker for another two weeks. I was still on pain pills so not legal to drive, plus it's surprising how many chest muscles are involved in driving a car. *TIP* when you're in a car, bring a small pillow to put between you and the seat belt.

As you're healing from surgery, you may get little "lightning bolts" or "zaps" as nerves regenerate. This sounds weird but something that helped me was to stand before a mirror with my hands lightly touching my chest. (Do not do this in a public bathroom LOL.) IDK why, maybe it helped my brain reconcile the senses of sight & touch. If your chest is super sensitive, try to wear only natural fabrics - cotton or silk - and nothing with seams.

*TIP* stay ahead of the pain! Take meds as prescribed even if you're not hurting at the moment.

*TIP* use a stool softener if you find your pain meds to be constipating.

Your body is healing on the inside as well as the outside so rest and recuperate! It's the best medicine.

Good luck! It's been a while but I'm doing well and happy to answer any questions. ((hugs))

badger · December 2015

oh and you should definitely join the January 2016 surgeries thread. The best support is from those going through it with you. https://community.breastcancer.org/forum/91/topics...

woodstock99 · December 2015

Thanks Badger. Yes I have joined that board as well.

Jedrik · December 2015

About that wire thing (as far as I experienced and learned about it): The stuff in the injection will pool in the sentinel nodes. If it's the radioactive stuff then the nodes are very visible in scans, but not to the naked eye. So before surgery the surgeon might take a peek via US and inject a wire right into the node so he knows where to find it during surgery. If there's more than one sentinel node he'll choose the one he'll want as a landmark. If he is doing this right before surgery commences you might be anesthezised anyway. If it is done a while before local anesthetic will be used and there's just a light tug when the wire goes in. You're not supposed to move your arm much once the wire is in.

He'll find the others because from the scan he knows where to look and will comfirm he's got them all via geiger counter.

If sentinel nodes are marked by a blue color, a wire might not be needed.

BarredOwl · December 2015

Hi Balthus:

I found an earlier version of this pamphlet from the Royal College of Surgeons to be very helpful regarding what in general to expect. Download the pdf pamphlet "Breast Mastectomy" at this link. Starting at page 10 (page numbers at lower right), it includes a chart for the recovery period with red, green and yellow lights about activity post-mastectomy and is kind of what you are looking for I think:

https://www.rcseng.ac.uk/patients/recovering-from-...

I also found the experiences here useful:

https://community.breastcancer.org/forum/91/topics...

A post-op check on Wed 1/20 with surgeon is good. You may be able to have drains removed at that time, and they can check that everything looks good.

You can call and ask the MO if that timing makes sense, and confirm that the full surgical pathology and any related tests that are needed will likely be (and later actually are) completed before meeting with the MO.

I took a notebook and pen with me to the hospital and an index card with a list to remind me to get instructions before discharge regarding the following:

Wound and bandage care, scar/incision care
Drain care
Signs of infection
Nutritional needs
Medications/pain control
Activity restrictions
Recommended exercises
Prosthesis restrictions (when is it okay to wear soft form with camisole, etc)

I was 52 and in good health otherwise. I was in the hospital one night (Wed), and home before 2:00 PM the next day (Thurs). I took oxycodone and tylenol on Thurs and Fri, then tylenol only. I started Colace on Thursday, and resorted to prune juice by Sunday.

Good luck!

BarredOwl

Age 52 at diagnosis - Bilateral breast cancer - Stage IA IDC - BRCA negative;

Bilateral mastectomy and SNB without reconstruction 9/2013

Dx Right: ER+PR+ DCIS (5+ cm) with IDC (1.5 mm) and micro-invasion < 1 mm; Grade 2 (IDC); 0/4 nodes.

Dx Left: ER+PR+ DCIS (5+ cm); Grade 2 (majority) and grade 3; isolated tumor cells in 1/1 nodes (pN0i+(sn)).

Paxton29 · December 2015

I just had bilateral mastectomy plus placement of tissue expanders and SLNB on December 9. My husband was with me the first four days but then had to go to work out of town. Luckily I stayed with my parents.

One thing I did was that my husband put me on a medication schedule, with reminders in my phone, to stay ahead of the pain. I did that for about a week maybe, then stopped the Tramadol and then the Valium maybe a day later. I am a lawyer and I checked emails and communicated with my office via phone and iPad, but I avoided direct communication with clients for a while in case the meds were affecting my ability to think clearly.

I personally really needed help the first several days to get out of bed. The drains are a PAIN. I have strong enough legs and abs that I didn't need my arms so much when getting out of bed but you have to be careful to remember not to let the drains dangle. Mine had plastic clips to attach them to clothing. I wore button up pajamas. While sponge-showering I put my drains in coozies my PS gave me, then clipped those to the lanyard he gave me. I did not need help showering but I didn't try it for a few days either. My first trip out of the house was to get my hair washed and dried. I did that twice before trusting the range of motion in my arms.

I did not ever have constipation problems and very little nausea, but you may not be too interested in eating. My mother made me protein smoothies. My PS stressed a lot of protein, which I like, but it can be tough to force yourself to eat a chunk of meat. Had I been alone I do think I could have shifted for myself but if you can have your husband prepare a few things that you can easily grab I think that would be wise for the first few days.

I do not like sleeping on my back so once I backed off the pain meds I had trouble sleeping (I tend to insomnia anyway). With a drain on each side you can't lie on your sides and mine were in almost two weeks. I slept propped up on pillows. My back tended to hurt if I didn't.

I went back to work yesterday. While I feel tired off and on, I've pushed through, trying to find that right balance. I definitely was not as active as quickly as some of the ladies here, but everyone differs. Considering that it qualifies as fairly major surgery (my husband pointed out I had been "violently assaulted" as far as my body was concerned), I was pleased at how well I recovered. Now comes the REALLY fun part of chemo and radiation .

Good luck!

Kiks1 · December 2015

Balthus,

I think everyone's experience is different so I think you should plan for the worst but keep hoping and praying for the best. Also, do you need a wire with DMX? I didn't have a wire inserted.

I had BMX and SNB on 12/17. I was in hospital overnight, they had discharged me even though I was having a low grade fever ( which I heard is common). I was actually relieved ( who sleeps in the hospital anyways!). Anyway, the fever broke the next day and I did not take any pain meds. I was just uncomfortable having the drains attached to me,I needed help with getting up from a lying position, and was too physically and mentally tired to have to worry about cooking. My 16 year old daughter ( on break for christmas) helped me with groceries, cooking, showers, laundry, and all daily chores ( she is a great kid, but still a teenager at times!). I have a German Shepard that somehow understood that I am sick and all she did was lick me when I got home from the hospital and in the mornings when I wake up. She also accompanies me to bed every evening. Amazing how they sense these things. Unfortunately, I know she miss her walks and runs but it has been so cold here in CO that it has been challenging just getting outdoors.

I wish you all the best but have faith and keep positive.

woodstock99 · December 2015

Thanks to all who responded today. Lots of great suggestions and information. Much appreciated!

Surgery on 1/12/16 - some questions

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