Wanting to learn from you...

[MFR4life]

Hello! I am here to learn what kinds of things you experience after breast cancer surgery. I am a physical therapist and I see people who seem to have similar experiences of not being given good advice as to what to do, what therapies to seek, what exercises to do, or anything pre or post surgically to help themselves avoid some common issues that can occur after surgery. I want to hear what you have to say so that I can tailor my treatments more specifically. Thank you, and I wish all of you the best in your journey.

[Dogpt]

I am a physical therapist who had breast cancer diagnosed 6 months ago. It is difficult becoming a patient . The doctors should stress exercise. Exercise helps decrease recurrence. It helps restore rom and strength lost from surgery and radiation. Weight training and weight bearing exercise should be stressed due to increased osteoporosis risk caused by being put into menopause (hormone positive breast cancer). Exercise also helps with depression caused by the diagnosis itself and by the treatments. Exercise helps decrease fatigue caused by radiation, chemo and hormonal treatments . Exercise helps decrease koint pain cased by hormonal treatment. Proper nutrition is also key . I was just given sheet with exercises hidden in a folder by the surgeon. None of the above was stressed. If patients are educated in the why they are more likely to follow through. When diagnosed you fell like everything is out of your control. Exercise and proper diet is one way you can fell in control again. It is hard to be motivated because breast cancer takes a huge emotional toll . Even after treatment you are anxious and scared about recurrence and traumatized by all the treatment and changes that happened to your body. Support groups and therapy are also ways to learn to cope and fell less alone.

[MFR4life in reply to Dogpt]

I am sorry to hear about your diagnosis. Thank you for your input. You have confirmed what I thought - that, at best, you might get a handout. All my clients have said they weren't given anything else, or anything at all - and this is shocking to me. I have some other thoughts I would like to discuss with you so maybe we could do that privately? Feel free to email me at [e-mail].

[Moomin8]

Hi,

I am 2 weeks post wire assisted excision of DCIS - lumpectomy. I didn't have any lymph nodes out and I am awaiting my results next week.

I have found that my recovery, so far has been ok; I'm lucky, I guess. Within 10 days I was throwing my basketball up - to get my goal of 60 shots a day - which is my 'normal' daily routine. I have been walking around my neighbourhood every day since day 3, when I took that awful binder off. Before that, I was walking in my garden every day. I watched my husband, bless him, put the washing on the line on day 2...that was the last day he did that! 😅Since then, I have used a small step-up to take me to correct height to reach the line-I don't even need that now. The only things I'm not doing is heavy work - vacuuming, ironing, driving etc; anything where I'll pull my stitches. I looked at the exercises, but they weren't 'me', so I just did similar things: walking hands up a wall - throwing up a basketball 🤷🏻‍♀️😂

Before my surgery, I had to come off all meds - I have rheumatoid arthritis. I made sure I walked an hour every day and did my bball. I stopped drinking any alcohol altogether and tried to make sure I ate sensibly and drank lots of water.

[MFR4life]

Thank you for your reply. Sounds like you are motivated and in tune with your body. Best of luck for the rest of your recovery.

[Sagebud]

I had a lumpectomy and radiation. I have practiced yoga for about 10 years and I think that helped a lot in recovery, particularly stretching of arms and upper/side body. After surgery my pectoral muscle on the affected side was very tight, but a year out, it almost feels completely normal. Nerves in my armpit from the lymph node removal (for testing) are still electric feeling, but not a big deal. While I think my surgeon and medical oncologist are good, no one said anything about diet and exercise. No hand outs. No nothing. Maybe it was because I already ate well and exercised, but still. I wish doctors focused on lifestyle as well, but I don't think that is their training for the most part. Surgeons cut. Doctors prescribe drugs. I look forward to the day that medicine is more integrated with health and not just sickness.

[KindArtist]

I had a lumpectomy on January 31st for a 2cm ductal invasive carcinoma. They took 2 lymph nodes. Genetic test was negative and clear margins! No chemo, no radiation, and on letrozole for 5 years. I had a great team of docs but there was no handout or any advice about post-surgical lifestyle or exercises. At my follow up a few months after surgery I mentioned the hard ball in my chest under the incision to my surgeon, and the advice was “Heat and massage, heat and massage”. When mentioning the side effects from Letrozole with the medical oncologist team, the only feedback was that we could stop and change to the other available drug (starts with an “E”). There was no mention on how I could better the joint pain, fatigue, hot flashes with what I’m already on. The other drug has even more listed possible side effects, so I’m not inclined to start over with that risk. I feel lucky because the outcome and post-surgical treatment could have been so much worse. However, it’s tough emotionally because all of my friends and family think I got through it and it’s over. Instead, I’m struggling inside because every time I take the pill I feel I’m doing harm to my body from a holistic viewpoint, knowing that it is the thing causing my ongoing and new symptoms, such as edema in my ankles or joint pain, and what the weaker bones will do to my lifestyle in the future. I ask myself if it’s worth it just for an extra 6% odds of non-recurrence, when the odds for cases like mine are already 88-90%. My medical oncologist thought that 10-12% recurrence rate without the pill was “significant” risk because we are talking whole body risk. (Whereas similar risk numbers were not significant enough to warrant radiation because it is localized risk, and my breasts will be checked often from now on). Although I could contact my doctors with questions, I agree that there’s definitely a hole in the treatment protocol for breast cancer patients without there being a standard of ongoing recovery instructions or advice. It’s a feeling of being dropped off at the curb to then fend on my own.

[Magnolia9912]

As a person who had DIEP flap reconstruction, I would have liked to know more about when and how to safely stand up straight. I'm 2 plus weeks post surgery now and although I can almost stand straight, I'm not fully there yet. I was given a ton of information about ROM exercises for my arms and shoulders but didn't think to ask about whether it was safe to gently massage the soreness underneath my arms (I've since found out yes it is). One more thing I would have liked to be aware of is the numbness underneath the arms and how to work on the nerves in that area.