Help: My Mom is Having a Mastectomy in 4 Weeks

sam484 · July 2015

Hello breast cancer support community

About 4 months ago my mother was diagnosed with stage 3 breast cancer. Her lymph nodes were also affected. She has been undergoing chemo since then and has only one more treatment left. Although the doctors were happy with her body's response to chemo and the consequent shrinkage of the tumour, last week her surgeon at Sunnybrook Hospital suggested that she she should receive a mastectomy of the left breast combined with complete removal of her lymph nodes on the left arm.

I am in my 30s and my mom is 62. I am the only child and my mom is a single mom who lives independently by herself about 45 min away from me. We have no family here in Canada (I.e. No aunts or uncles). We are fortunate to have a number of close family friends who have offered to help out after my Mom's surgery. I am married and have a 18 months old baby and both my wife and I have busy/demanding jobs.

By writing on this discussion board, I was hoping to connect with other people who have gone through mastectomy and lymph node removal (or have had family members go through it) to get the following questions answered:

1. What is the recovery period like? Should I take a week, 2 weeks, 3 weeks off from work?

2. Is the recovery period really painful? How long does it last?

3. I am planning on having my mom in our place for the first week after the surgery. Would she be able to move into her place by week 2 or would she need more time? ( she's more than welcome to stay as long as she wants but I'm concerned about having her and a 1.5 year old baby in a condo)

3. Would my mom need help to use the washroom and shower after she is released from the hospital?

4. I am concerned about lymphedema. Are there people who did NOT end up with lymphedema after the surgery? Also, those who do/did have lymphedema, was it painful? How long did it last? What impact is it having on your life style?

I'd greatly appreciate it if could answer my questions above.

Thank you and God bless!

Morwenna · July 2015

Hi Sam,

A single mastectomy is not too disabling. I found the worst pain was from the axillary node dissection resulting in a burny, grazed sensation down the back/inner surface of my upper arm. Range of shoulder movement takes a month or two to get back, and she will have exercises to do. Post-operative pain varies from person to person of course, but is generally well managed.

I managed my drains on my own, but did enlist hubby's assistance to apply the dressing around the one under my arm. Some ladies are not permitted to shower with drains in, but I could at 48 hrs post op. I tied an old stocking around my waist to pin the drains to, or she can use a lanyard around her neck.

Going to the bathroom is not a problem, regarding managing clothes etc, if that's what you meant, but constipation should be anticipated and actively managed!!

I think you will find the majority of ladies reading the lymphedema threads DO have lymphedema!, but there are many many who don't develop it. She'll be given advice on prevention, but in my opinion it is a crap shoot! It doesn't have to be disabling, even if you do get it, and often doesn't develop until months or even years, after surgery.

Lymphedema is a lifetime risk, for those of us who are at risk, and once established there is no cure, and no end to it. It just has to be managed, and if it develops, the aim is just to control it as much as possible. That sounds dire, but so far mine was moderate, and is now mild at present. I don't wear my sleeve all the time, and I exercise actively (dragon boating with a survivors race team!)

How long you take off work will be up to you, and her, of course, but a lot of people manage on their own. I think it's nice to have someone about for a day or two, but I actively encouraged my dh to go back to work! Nights are long, and I slept propped up on pillows, or later turned towards my "good" side with my arm resting on a pillow.

I wish your mother all the best, and she is lucky to have such a concerned son!

vlnrph · July 2015

Hopefully mom will have an LE consult/teaching session prior to surgery when baseline measurements will be taken, for comparison later if swelling develops. She should not raise her arm above shoulder level for at least a week post-op, to allow time for the delicate lymphatic vessels to begin healing. Stretching to regain range of motion can wait. I had a couple months of physical therapy appointments once the drains were out.

Morwenna makes several other good points which I don't need to repeat. Recovery also depends on what type of reconstruction is planned, also whether radiation is scheduled in the near future.

Binney4 · July 2015

Hello, Sam,

All best wishes to you and your mom for smooth sailing and a quick recovery. Lymphedema is certainly not inevitable, but it is something she'll need to be watchful about going forward. I'd emphasize vlnrph's advice about seeing a well-trained lymphedema therapist BEFORE her surgery for baseline arm measurements and personalized risk reduction tips.

Here are some strategies for reducing her risk of lymphedema:

http://www.stepup-speakout.org/riskreduction_for_l...

And here's how to find a well-qualified lymphedema therapist near you:

http://www.stepup-speakout.org/Finding_a_Qualified...

Morwenna gave you some great suggestions, but definitely DO NOT assume your mom will be given any lymphedema prevention advice by her medical team. For too many of us this was a subject that was either skimmed over briefly (and sometimes inaccurately) or ignored completely. You're wise to be doing your own research.

Please greet your mom for us and tell us how we can help. And do please keep us posted!

Be well,
Binney

Jennie93 · July 2015

What Binney said about the lymphedema thing! :-)

As far as recovery goes, I too had a UMX on the left, and I'm right-handed, so it was really not much of an issue. If she is only having one side done, she will still have one good arm, and can do pretty much everything. I stayed in the hospital one night, and yes, the first few bathroom trips the nurses helped, because I was still woozy from anesthesia, but by the next morning I was good to go. No one ever helped me with anything after that. Drains are annoying but not something you need help with. Showers, once the doc says go ahead, no biggie, as long as you aren't dizzy from pain meds or anything. Bit of a pain to wash hair one-handed but it's doable.

I personally would think she would be more comfortable in her own house. But she probably won't be able to drive for a week or so. I went back to work one week after surgery and that was the first time I drove, it was a little awkward not having full use of the left arm, but it's a short trip. :-)

My hubby took off work the day of my surgery and two days afterward, then went back to work. It was no problem being home alone all day. I was sleeping a lot, recovering, anyway. But no, I didn't need any help with any day-to-day activities at that point.

Everyone is different of course but I did not need any pain meds after leaving the hospital.

carol57 · July 2015

sam, with all the nodes being removed, your mom's lymphedema risk is pretty high: at least 40%, and likely higher than that. But the first and most important step toward reducing that risk is to know she's at risk and take steps --like those Binney pointed you to on the step-up website-- to be proactive where she can.

Vlnrph pointed out your mom should not raise her arms above shoulder level for at least a week; one study I read suggests closer to two weeks. Whether one week or two, be aware that you and your mom may find yourselves needing to advocate for that step, as many surgeons order physical therapy starting the day after mastectomy, trying to prevent the somewhat common frozen shoulder (adhesive capsulitis) that can happen after mastectomy. The study I'm thinking of concluded that delaying PT by a week or two does not diminish its effectiveness in restoring shoulder mobility. Unfortunately, not all surgeons and not all PTs are up to date on lymphedema. The study in question is titled 'A randomised controlled trial of two programmes of shoulder exercise following axillary node dissection for invasive breast cancer,' by Jacquelyne Todd et al, and I think it's readily available in full text if you google for a link. If not, send me a private message, and we can exchange email addresses so I can send you a pdf.

And on a positive note, in 1969 my mother had a radical mastectomy--taking more tissue than they do today--and lost every single axillary node, topped off with beyond-today's dose of radiation, which also increases LE risk. And although LE is a lifetime risk--it can appear even decades after surgery--she never developed any hint of lymphedema, and at 85 she's going strong. With luck, your mom's lymphatic system is a robust one, and she'll recover from the surgery with no LE issues at all.

Kicks · July 2015

We are each very different and in our experiences. There is no 'One Size Fits All' when it comes to what we experienced (or will experience). Many issues come into play (or not into play).

I was 63 when DXd IBC. Did neoadjuvant DD A/C, UMX, adjuvant weekly Taxol, 25 rads.

1. For me, I was quite able to take care of myself. I was driving the next day with no problems. Hubby and adult son (30 at the time) both took the day of surgery off. They decided that as it was easier for Son to get off work, he would be the one to bring me home the next day.

2. Yes, there was definately some pain - more of a major discomfort. My 2 C-sections were a lot more painful than UMX was. My Surgeon gave me a 'script' for Oxy but only took a couple of them. Within a few days I was back riding our horses.

3. Yes - she should be able to go to the bathroom by herself. Different Drs have different thoughtt on when to shower/bathe after surgery so he/she is the one to ask.

4. LE - she needs to get a referral to a LymphEdema Therapist either before surgery of soon after to get baseline measurements and knowledge. Unfortunately many Drs have no real understanding about LE. Not all developedevelope LE post surgery - after any surgery or traumatic injury it is possible to develope even years later. IF LE developes, it is 'there' forever - it is manageable, with knowledge.

I can only speak for myself. I've been dealing with LE for 5 1/2 yrs and has never 'slowed' me down or kept me from being the VERY active outdoor woman I am. For me - I have not had any pain associated with LE.

glennie19 · July 2015

Agree with all the advice you have been given. I do suggest that your Mom have some button front shirts to wear as pulling a shirt over her head will be somewhat difficult for a while. Showering, when allowed, may feel tiring at first, so if you are able to borrow a shower type chair that might be helpful.

I took 4 weeks off of work,, mainly because I have a ton of sick time,, I could have returned after 3 weeks. Everyone varies on this, and I only had 6 nodes removed. Many many people do NOT get lymphedema. It is truly a crapshoot. I had only 6 nodes removed and I got it,, and yet there are many others, who had many more removed than I did, and have never gotten it. Great tips above and I recommend the Step Up Speak Out site also. GREAT information.

Wishing your Mom a speedy recovery.

Help: My Mom is Having a Mastectomy in 4 Weeks

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