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Topic: Not sure what to do with myself post surgery

Forum: Surgery - Before, During, and After — Surgical options and helpful tips for recovery and side effects.

Posted on: May 29, 2020 04:36PM - edited May 29, 2020 04:37PM by KMom57

KMom57 wrote:

One week out post surgery, and I feel lost. There's no plan yet for what comes next. I know radiation and most likely chemo is in the cards, but right now I'm just lost. I got used to living with this whole thing since my diagnosis last Nov, while I was on neoadjuvant letrozole, and could almost reallyforget at times that it was out there. I got good at living in the moments in between. Now it's like I can't. Like that life ended, and I don't know what to do with myself. I feel like I finally actually have cancer. I hate it, and I don't know what to do with myself or if I'll ever feel like me again. I can let go of my breasts. It’s my life I want back.

Dx 10/2019, ILC, Left, 2cm, Stage IIIA, Grade 2, 8/11 nodes, ER+/PR+, HER2- Hormonal Therapy 11/6/2019 Femara (letrozole) Surgery 2/15/2020 Prophylactic ovary removal Surgery 5/18/2020 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 7/31/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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May 29, 2020 05:40PM Spookiesmom wrote:

So grab your life back!! What’s stopping you? The weather is breaking, get outside, plant some plants!!A garden. What did you do before cancer? Do it again!! Get a pet? Take up a hand craft? Meet a friend for lunch at a place with outdoor seating I did that yesterday, we had a blast

It does get better when you have a tx plan so you can plan your days. And it will happen you don’t think about cancer every day. I’m really not Pollyanna. I do have down days. Don’t let cancer have anymore of you. It got enough

Reoccurrence 3-19. Dx IDC, Stage IIIA, Grade 3
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May 29, 2020 05:53PM berries wrote:

sending you love. i know the days after surgery were the hardest for me. i was a shell of myself, dreading the weeks and months to follow after i received my final pathology. crying daily. i would love to say it gets better, but i can't. you only get stronger...


Dx 8/6/2019, DCIS/IDC, Left, 5cm, Stage IB, Grade 1, 4/4 nodes, ER+/PR+, HER2- Surgery 9/18/2019 Mastectomy: Left; Reconstruction (right) Chemotherapy 10/24/2019 AC + T (Taxol) Surgery 2/17/2020 Reconstruction (left): Silicone implant Radiation Therapy 3/30/2020 Whole-breast: Breast, Lymph nodes Chemotherapy 4/29/2020 Xeloda (capecitabine) Hormonal Therapy 5/7/2020 Arimidex (anastrozole)
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May 29, 2020 05:59PM KMom57 wrote:

I know you are right, but I can't seem to do it. This darn drain has me really down. Can't even shower. One arm is nearly non-functional. And I’m not allowed to do the things we did before. I know that part is temporary but....But it's more than that. I'm so scared. I am a single mom of a 12 year old who has nobody but me, and the pathology was so much worse than I expected and it left me reeling. I'm terrified I won't be here for her. Terrified it's already spread, and that I'm going to be actively dealing with cancer for the rest of a too short life. I don't know how to do this. And I'm so scared I made the wrong choice last November on treatment, and that I made it worse, lost too much time.

Dx 10/2019, ILC, Left, 2cm, Stage IIIA, Grade 2, 8/11 nodes, ER+/PR+, HER2- Hormonal Therapy 11/6/2019 Femara (letrozole) Surgery 2/15/2020 Prophylactic ovary removal Surgery 5/18/2020 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 7/31/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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May 29, 2020 06:12PM Spookiesmom wrote:

ok I’m a lot older than you. Was 65 at original dx. Now stage 4. I still have a lot of life left in me. So you do what you have to do now. I had 7 years NED. Then it came back. There is a lot of treatment options for me, and more in development.

The drain will be out soon. I had 4 with bmx. Oh yeah, they were a PITA.

Check at your txcenter, see if there is a nurse navigator who can direct you to some talk therapy. May help. Or just dump your fears here, or on her.

And maybe check into an attorney for some help making sure your DD is taken care of.

Reoccurrence 3-19. Dx IDC, Stage IIIA, Grade 3
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May 29, 2020 06:22PM Martaj wrote:

kmmom, You just had major surgery. Don't be so hard on yourself!!!! Get yourself out and walk with or without drains. Listen to some music you like, watch a funny movie. It gets better!!! I had partial mastectomy with reconstruction both breasts, axillary nodes removed, The more you move physically after surgery the better you feel. Rest frequently. Your body needs it. Make sure you are drinking plenty of fluids also. I had 6 months of chemo before surgery, and 4 weeks later surgery, then 4 weeks later 6 weeks of radiation. Almost back to normal self, but I do get down and tire easily, but doing things you like, even if it is reading a book, you need to take your mind of things and let go. I have stage 3 triple neg breast cancer, cancer, NED at this point. I can't let cancer get me down. I'm only 64

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May 29, 2020 07:52PM Rambros wrote:

I’m sorry you’re so scared. Have you had any scans to check for spread? If not, maybe that would help ease your fears a little.

I was also diagnosed with young kids (5 and almost 2 at diagnosis). They are now 10 & 7. I understand that fear that you won’t be around for them, it’s horrible and still is at times. Unfortunately it’s something that you just have to learn to live with. It sucks, but that’s your (and my) reality. I recommend that you do all you can now (treatment wise), live a healthy & fun life with your daughter and hope (and expect) for the best. Don’t waste time second guessing your prior treatment choices - I think most of us have things we would have changed if we could do it again (I know I would have). It may not feel like it now but you’ll feel like yourself again and be happy again. Take care

Dx 10/8/2014, IDC, Left, 3cm, Stage IIB, Grade 3, 1/10 nodes, ER+/PR+, HER2- (FISH) Surgery 11/17/2014 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 1/6/2015 AC + T (Taxol) Hormonal Therapy Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Surgery Prophylactic ovary removal Radiation Therapy Lymph nodes, Chest wall
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May 30, 2020 12:53AM LillyWasHere wrote:

KMom57, it is temporary and you will forget it. Same as giving birth, it is painful but the time goes by and you forget the pain. As soon as the drains are out, 70% of pain will go away and in a month you will be up and running. Enjoy your time with you daughter since you both are home. I hope she is a good helper.

Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 12/1/2019 Femara (letrozole)
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Jun 4, 2020 09:35AM Mareny109 wrote:

How are you doing? I could have wrote something similar to what you wrote. It's very scary. I'm going to make some phone calls today to see if I can find a support group around here.

Dx 4/16/2020, DCIS/IDC, Right, 4cm, Stage IA, Grade 1, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 4, 2020 11:51AM KMom57 wrote:

I don’t know. I guess I’m ok. Had my first real shower yesterday which for some reason was traumatic. No idea why. I didn’t cry before surgery, even though I was fully aware when they wheeled me into the OR, and even when I had to crawl up onto the operating table myself. But taking that first shower, that did me in.....Now I’m mostly just worried about the CT scheduled for staging, and worrying that I can’t lift my arms above my head or even past shoulder height. Does that go away? They didn’t give me any exercises that first two weeks (still haven’t but I found them online). Is it too late to get back my ROM? I didn’t know I was supposed to be doing them all along. I thought they’d tell me when I could.

Dx 10/2019, ILC, Left, 2cm, Stage IIIA, Grade 2, 8/11 nodes, ER+/PR+, HER2- Hormonal Therapy 11/6/2019 Femara (letrozole) Surgery 2/15/2020 Prophylactic ovary removal Surgery 5/18/2020 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 7/31/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jun 5, 2020 11:15AM MinusTwo wrote:

You need to call your doc for MILD exercises. For now - don't life your arms above shoulder height. One of the first exercises i was given was "wall walk". Walk your fingers up the wall & try to reach shoulder height. But each doc is different, so do push your for what they recommend. Of course you'll get your ROM back - just very gradually.

And like everyone says, it will get better.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jun 5, 2020 11:38AM KMom57 wrote:

Thank you Mika Mika. I did call, and they told me to do exactly what you described. Only they said go as high as I can go without pain. It’s pretty scary. I was pretty active and self-sufficient before this, and I’ve never in my life not been able to do physically whatever I want to do. It’s.....something.

Dx 10/2019, ILC, Left, 2cm, Stage IIIA, Grade 2, 8/11 nodes, ER+/PR+, HER2- Hormonal Therapy 11/6/2019 Femara (letrozole) Surgery 2/15/2020 Prophylactic ovary removal Surgery 5/18/2020 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 7/31/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jun 23, 2020 10:22AM Seilien wrote:

From a parent's perspective, yes it is so hard. I had 3 outpatient surgeries that kept me incapacitated for 3 days which is really hard when you have a baby/toddler that needs holding and shes heavier than the weight limit I was allowed. I had 2 major surgeries which took months to really recover from. I just realized that googling helped ease some of my uncertainty but created more anxiety but there aren't many cases that are actually like my own so I grew frustrated at the lack of information. Also drs always say "usually people respond/recover this way" and I am always the outlier.

After my last surgery, I could not shower. I didnt care to do it and my body hated doing it. I was also very emotional and sensitive for 5 weeks after. It became my goal to shower more (every other day or if I'm seeing people). I love to cook/bake and I started to 6 weeks after.

A month is a long time to wait to "feel better" but I cant say I felt like I did before any of my surgeries. Honestly, I'm starting to forget what I felt like before and have gradually accepted the new lifestyle I have now. I have memories of what my life was before which makes me sad but when you focus on this day, this moment, I feel fairly content.

Its been over a year since my bilateral mastectomy. Last year, I could not get my hands over my head without shaking or hurting. This year, my 1 arm is fine but the side that had cancer is still struggling but I dont feel pain. My drs didnt tell me to stretch/exercise my arms so maybe I wasnt active enough.

Dx 7/30/2018, Right, Stage IV, metastasized to brain, ER+/PR-, HER2+ Radiation Therapy 6/1/2019 Whole-breast: Breast, Brain Surgery 11/21/2019 Reconstruction (right): Tissue expander placement Chemotherapy 7/27/2020 Xeloda (capecitabine) Surgery 8/27/2020 Reconstruction (left)
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Jun 23, 2020 12:06PM - edited Jun 23, 2020 12:07PM by KMom57

Mine didn't give me any exercises to speak of either. I also hate showers now, though I force myself through it every day. My ROM is getting better though I'm not there yet. I force myself to do everything twice— if I reach in the washer with one arm, I repeat it with the other just to counteract the instinct to protect my worst (left) side. I also stretch on the wall every time I refill my coffee. Stretch on a particular tree branch every time I go for a walk. I don't feel like I'm getting better, but then I see that my arm is a little higher on the wall today than yesterday so I'm hopeful. The worst part, I think, is the dead feeling under my arm where they took the nodes, and on my chest. It creeps me out.

Dx 10/2019, ILC, Left, 2cm, Stage IIIA, Grade 2, 8/11 nodes, ER+/PR+, HER2- Hormonal Therapy 11/6/2019 Femara (letrozole) Surgery 2/15/2020 Prophylactic ovary removal Surgery 5/18/2020 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 7/31/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jun 24, 2020 08:49AM e32 wrote:

This sounds so similar to my experience. There is a lot of physical shock to your body, but also a lot to process. It didn't seem like I would ever get more independence. I was frustrated because not being able to do things I used to be able to normally seemed to drag on. I have little kids and I felt like I wasn't being a good mom to them. I just felt.. off. Time definitely helped though and I am starting to see brighter days now and ROM is returning. It's just a LOT to experience physically and emotionally all at once and I am sure that hormone fluctuations don't help that, etc. Hang in there. Easier said than done, I realize! One foot in front of the other.

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Jun 24, 2020 10:41PM - edited Jun 24, 2020 10:42PM by JRNJ

kMom57, I felt a lot like you. I didn't get out of bed for two months after my dx, I just read and read on my phone. I had a lot of pain from my surgery, I had severe mental anxiety after surgery finding out I had positive nodes, and had no plan. ILC is sneaky and doesn't always show up on scans. They told me probably no chemo or radiation. My BS refused to see or talk to me until 2 weeks after surgery, she sent her trainee to see me in the hospital. I had a mental breakdown. I thought, what if I'm one of those people with post mx pain syndrome? What if I don't get enough treatment? I wanted to be aggressive. Than at about 5 weeks I started to feel much better painwise, even with infected TEs. Oh and I was never told to do any exercises, but my range of movement is fine. I got 3 opinions on chemo. Once I had a plan in place, and the pain went away, and I dumped my BS, it was like the fog lifted and I started to feel a little normal (My normal self is OCD and filled with anxiety and depression) I redid my 12 yo daughters room with her before chemo started. I hosted Thanksgiving dinner. Chemo and radiation are just a temporary blip in time that will be over soon. I constantly second guess every decision and everything I'm told. That is the worst part of this process, having to make those decisions. But we can't change the past, only the future. Be aggressive, do your treatments and you'll be OK. I felt great during radiation. Now I just started lupron and aromasin and I'm miserable again. But I think my body is adjusting. So at least you already crossed that off your list. And I thought the reverse, why didn't they start me on endrocrine therapy much sooner? We both just have to move forward. I know easier said than done. I was lucky to be off of work throughout treatment, and just started again a few weeks ago. That really takes my mind off of it, now I'm stressing about work again, lol.

Pleomorphic Multifocal, Extra nodal Extension, Lymphovascular Invasion. TEs removed due to infection Dx 8/15/2019, LCIS, Right, 6cm+, Grade 3, ER+/PR+, HER2- Dx 8/15/2019, ILC, Right, 2cm, Grade 3, 2/5 nodes, ER+/PR+, HER2- Surgery 9/24/2019 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/2/2019 CMF Radiation Therapy 3/30/2020 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/4/2020 Aromasin (exemestane) Hormonal Therapy 8/6/2020 Arimidex (anastrozole) Surgery 8/25/2020 Prophylactic ovary removal
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Jun 25, 2020 01:19AM Cutie wrote:

It's It's temporary and it will eventually be back. I had BMX after chemo. Right after surgery I had to hold my chest area feeling something is dropping when I walked. But later it felt better. I was given a list to exercise, exercises after breast surgery like rotating arms, raising hands etc. You can check online for video. It really helped me to get back ROM. After around 6 weeks, I had physical therapy. It really helped me. I still doing therapies as it helped me. Please be patient and it is going to be ok soon.

Hugs.

Dx 12/28/2018, IDC, Right, 3cm, Stage IIIA, Grade 3, ER-/PR+, HER2+
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Jun 25, 2020 01:44PM KMom57 wrote:

Thanks all of y'all for the encouragement. I've been stretching. I'm at Week 5 after surgery and it seems to be getting better. While it still feels like I have on a bra I want to take off and can't, the feeling like a super tight rope cutting into my chest has pretty much dissipated. My range of motion on my ALND side still isn't there, but I can get a full four inches or so higher on the wall than two weeks ago, so I'm making progress. The feeling that I have a baseball under my arm on that side is also much better. The dead feeling though....still creepy. Other thing that’s better five weeks out, I was feeling like I was having muscle spasms or something frequently on the left side chest and arm, especially when I got chilled or cold. That seems to be settling down. The raw skin feeling on my arm is getting somewhat better too. So feeling more hopeful. I do appreciate the encouragement.

Dx 10/2019, ILC, Left, 2cm, Stage IIIA, Grade 2, 8/11 nodes, ER+/PR+, HER2- Hormonal Therapy 11/6/2019 Femara (letrozole) Surgery 2/15/2020 Prophylactic ovary removal Surgery 5/18/2020 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 7/31/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)

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