Post Mastectomy Must Haves?

Posted by dianetich @dianetich, Jul 31 8:32pm

I am having a double mastectomy on August 25th. Trying to figure out what I should buy for post surgery recovery. (clothes, pillows, creams etc) What are/were your post-mastectomy "must haves" that you found helpful? Thank you!

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Profile picture for part @part

My drains had clips on the outside of the tubing of the drain. The clips had sharp ‘teeth’ allowing me attach the drains to a lanyard. The lanyard was actually a long 1/2” string that the hospital gave me to go home with but I was able to knot it to the length I wanted. Simply clip the drains onto the lanyard. No shower for 6 days after surgery until I saw him in office. I washed my hair in kitchen sink during the 6 day period. I am surprised that surgeons don’t give you the lanyard type string ahead of surgery. Also not a bad idea to ask about the drains if never encountered them before. It seems ridiculous to wake up groggy and be sent home with stuff you have never seen previously. My situation a bit different mastectomy 22 years ago with saline implant. Back then I used a study pillow. Reoccurrence in April so had implant removed to a flat chest 3.5 weeks ago as well as tumor removed and 1 sentinel node. the plastic surgeon suggested a “shelf” at the bottom of breast for a bra to sit. Hope this makes sense. He gathered tissue to create the shelf. I definitely did not ask enough questions. I am 3.5 weeks out. Both drains removed at 2 week mark. The shelf type area still feels like a very tender bruise. Some suggestions I would make is to have easy microwave meals because cooking takes forever when you are trying to use mostly 1 arm. If I overdo anything the tender bruise hurts more. The plastic surgeon did tell me “elbows in” for 1st 2 weeks and he still doesn’t want reaching up motions. I quizzed a bit more and he wants to avoid fluid collections under the skin that would make me unhappy with the results. I didn’t use any special equipment. When I went to MD office with the drains I wore them on the lanyard under my button down shirts. I stocked up on button down shirts. Actually bought myself some pajamas_2 pairs. I still haven’t put a shirt on over my head. I did cook ahead. Slept in bed, avoided the L side. 1/2 pain pill helped me get 5 hours a night. Hope this is helpful. Sending you all my best wishes

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Thank you so much!

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Profile picture for briarrose @briarrose

Great advice from everyone! Here is my story:
Bilateral mastectomy, no reconstruction. In the OR a compression band bra is placed on you with hooks for the 2 drains. Overnight stay in hospital. PT came & showed me about 5 exercises to do x3/day. I did them x1/day. No shower until 48 hours. Protect the drains. Get a lanyard to wear in the shower so the drains aren't hanging, must place them in the 2 pouches. I didn't face the shower head directly to protect my chest. I drained my drains AM & PM. Must log the amount (they give you the form) & bring to your all initial visits. Was told 2 wks. for drains - 1 removed, 2nd drain was 3 weeks, removal depends on fluid amt. drained. Will need mastectomy tops (Amazon) with drain holders for day & night. While the drains are in, you must sleep on your back only. Bought a wedge from Amazon for this (I am a side sleeper only, so a little annoying but certainly doable). Also, bought a mastectomy "pillow" (Amazon) to help me not to turn while sleeping with drains. Still use it for comfort 3 months later. A couple of compression bras with drain pouches (Amazon) and Medicare allows 1 for free (go to certified mastectomy fitter). Coming home from hospital: Mastectomy pillow under your seatbelt. Vomit bags just in case (Amazon). I was fine. And wear your mastectomy shirt for the drains to the hospital so you have when leaving. Don't forget your exercises, I did mine faithfully. Must avoid frozen shoulder.
First week discomfort but not terribly! Pain medication x1 wk. then Tylenol. Most uncomfortable was my armpits b/c of lymph node removal (12) but still not terrible. I also had (& RNs will give you) some large gauze pads to place over your incision(s) under your mastectomy bra for comfort. I had post op swelling so my surgeon gave me a compression band to wrap tightly around my chest. This actually felt good and helped, wore it for several weeks. You will keep more post op instructions (hand-outs) re: when to massage your incision(s) for healing and swelling reduction. I do this with Vitamin E oil. It really is not a lot of "stuff" to buy...but these are the basics.
You will get through it all! All of the oncology team were simply great. You will be treated with TLC.
The very very best wishes for you...be positive, you are getting rid of the poison in your body!
Hugs!

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Great advice, thank you!

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Profile picture for briarrose @briarrose

Great advice from everyone! Here is my story:
Bilateral mastectomy, no reconstruction. In the OR a compression band bra is placed on you with hooks for the 2 drains. Overnight stay in hospital. PT came & showed me about 5 exercises to do x3/day. I did them x1/day. No shower until 48 hours. Protect the drains. Get a lanyard to wear in the shower so the drains aren't hanging, must place them in the 2 pouches. I didn't face the shower head directly to protect my chest. I drained my drains AM & PM. Must log the amount (they give you the form) & bring to your all initial visits. Was told 2 wks. for drains - 1 removed, 2nd drain was 3 weeks, removal depends on fluid amt. drained. Will need mastectomy tops (Amazon) with drain holders for day & night. While the drains are in, you must sleep on your back only. Bought a wedge from Amazon for this (I am a side sleeper only, so a little annoying but certainly doable). Also, bought a mastectomy "pillow" (Amazon) to help me not to turn while sleeping with drains. Still use it for comfort 3 months later. A couple of compression bras with drain pouches (Amazon) and Medicare allows 1 for free (go to certified mastectomy fitter). Coming home from hospital: Mastectomy pillow under your seatbelt. Vomit bags just in case (Amazon). I was fine. And wear your mastectomy shirt for the drains to the hospital so you have when leaving. Don't forget your exercises, I did mine faithfully. Must avoid frozen shoulder.
First week discomfort but not terribly! Pain medication x1 wk. then Tylenol. Most uncomfortable was my armpits b/c of lymph node removal (12) but still not terrible. I also had (& RNs will give you) some large gauze pads to place over your incision(s) under your mastectomy bra for comfort. I had post op swelling so my surgeon gave me a compression band to wrap tightly around my chest. This actually felt good and helped, wore it for several weeks. You will keep more post op instructions (hand-outs) re: when to massage your incision(s) for healing and swelling reduction. I do this with Vitamin E oil. It really is not a lot of "stuff" to buy...but these are the basics.
You will get through it all! All of the oncology team were simply great. You will be treated with TLC.
The very very best wishes for you...be positive, you are getting rid of the poison in your body!
Hugs!

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Great suggestions and tips! Here's one more.
Many (but not all) full-zip fleece jackets and sweatshirts have pockets on the inside that form the exterior pocket. You may have one in your closet. If so, you can put the drain bags inside of the interior pocket and skip the lanyard.

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Great idea! I will have to look in my closet!

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Profile picture for olivia7850 @olivia7850

Great suggestions and tips! Here's one more.
Many (but not all) full-zip fleece jackets and sweatshirts have pockets on the inside that form the exterior pocket. You may have one in your closet. If so, you can put the drain bags inside of the interior pocket and skip the lanyard.

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Thanks for these suggestions! I’m scheduled for a double mastectomy on 8/28. No reconstruction. I feel confident about deciding on this risk reducing surgery but my immediate family is not completely on board. Am wondering if others have experienced this situation.
I am 1 year post lumpectomy having had stage 1 lobular cancer. 3 weeks of radiation which I tolerated well. I’ve had a persistent seroma at incision site (9 aspirations, 2 attempts at external drains) so the next step would be surgery to remove the seroma. For peace of mind I’m opting for what my family feels is extreme surgery.
I appreciate having this forum!

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Profile picture for rhb28 @rhb28

Thanks for these suggestions! I’m scheduled for a double mastectomy on 8/28. No reconstruction. I feel confident about deciding on this risk reducing surgery but my immediate family is not completely on board. Am wondering if others have experienced this situation.
I am 1 year post lumpectomy having had stage 1 lobular cancer. 3 weeks of radiation which I tolerated well. I’ve had a persistent seroma at incision site (9 aspirations, 2 attempts at external drains) so the next step would be surgery to remove the seroma. For peace of mind I’m opting for what my family feels is extreme surgery.
I appreciate having this forum!

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Family feedback can be tough. But ultimately it's your body and your decision. I opted not to have reconstruction and have remained comfortable (3 years later) with that decision. The family came around. I hope it all works out for you. Wishing you all the best!

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Profile picture for rhb28 @rhb28

Thanks for these suggestions! I’m scheduled for a double mastectomy on 8/28. No reconstruction. I feel confident about deciding on this risk reducing surgery but my immediate family is not completely on board. Am wondering if others have experienced this situation.
I am 1 year post lumpectomy having had stage 1 lobular cancer. 3 weeks of radiation which I tolerated well. I’ve had a persistent seroma at incision site (9 aspirations, 2 attempts at external drains) so the next step would be surgery to remove the seroma. For peace of mind I’m opting for what my family feels is extreme surgery.
I appreciate having this forum!

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Many patients get a bilateral mastectomy for DCIS or LCIS (a precancer). Many more get them for a single cancer tumor in one breast. Why would it be an extreme surgery for you to decide to just stop with the drains and the aspirations that don’t seem to be taking care of it.
In my humble opinion, the only question would be, if you feel like it is the right thing for you?

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Profile picture for rhb28 @rhb28

Thanks for these suggestions! I’m scheduled for a double mastectomy on 8/28. No reconstruction. I feel confident about deciding on this risk reducing surgery but my immediate family is not completely on board. Am wondering if others have experienced this situation.
I am 1 year post lumpectomy having had stage 1 lobular cancer. 3 weeks of radiation which I tolerated well. I’ve had a persistent seroma at incision site (9 aspirations, 2 attempts at external drains) so the next step would be surgery to remove the seroma. For peace of mind I’m opting for what my family feels is extreme surgery.
I appreciate having this forum!

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Thank you for sharing your story. I’ve recently been diagnosed with stage one DCIS, and I’m considering a double mastectomy with DIEP flap reconstruction. None of the options is ideal, but I believe we must do what is necessary. It’s not an easy decision, but the support I’ve received from women who have faced breast cancer and from forums like this has made the process more bearable. It’s important to do what is best for your health and to focus on living your best life moving forward. I will be praying for you. Wishing you blessings and peace in your decision.

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Profile picture for rhb28 @rhb28

Thanks for these suggestions! I’m scheduled for a double mastectomy on 8/28. No reconstruction. I feel confident about deciding on this risk reducing surgery but my immediate family is not completely on board. Am wondering if others have experienced this situation.
I am 1 year post lumpectomy having had stage 1 lobular cancer. 3 weeks of radiation which I tolerated well. I’ve had a persistent seroma at incision site (9 aspirations, 2 attempts at external drains) so the next step would be surgery to remove the seroma. For peace of mind I’m opting for what my family feels is extreme surgery.
I appreciate having this forum!

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I agree family feedback can be tough. It ultimately is your body and what you feel comfortable with. I had stage 2 lobular and opted for single masectomy, no reconstruction. I didn't want reconstruction at my age, that would have been to much surgery for me. Any kind of breast surgery will be an adjustment at first, I am happy with what I decided and wish you comfort and peace with your decision. It will all work out. Hugs.

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My family was not all on board but still went forward with a prophylactic bilateral mastectomy. A double mastectomy was the best choice for me because I did not want to have further lumpectomies/surgeries or the worry (and wait for diagnosis/prognosis) if same cancer or new form were found in the future. I also wanted to avoid radiation and chemo. Further, I reduced my lifetime cancer risk score in either breast to 3% - amazing odds so to me the loss of my breasts to extend my life, and quality of life, was a no brainer. There is no correct answer/decision; consider pluses and minuses to each treatment plan and make your decision...and then speak to your family again. I did this and feel I made the best decision for me - and when I shared my lists with my family those less receptive became more receptive. I am four weeks out tomorrow and the nay sayers are becoming more accepting each day- I think they also realize they would rather have me here, and healthy, than not. Good luck with your decision...big hug!

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