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Topic: Flat, but tight one year out - anyone have further surgery?

Forum: Living Without Reconstruction After a Mastectomy — Discuss prostheses, swimsuits, bras, and other options for women not having reconstruction or waiting for reconstruction.

Posted on: May 13, 2019 08:47PM

SPDGirl wrote:

I had a BMX in May 2018 without reconstruction. My surgeon did a great job and everything is visibly neat and tidy. I recovered my range of motion fairly quickly and did not have very much pain in recovery. However, I have had continual chest tightness since the beginning and I am coming to the end of my rope on it. My incision scars are keloid (or hypertrophic depending on which doctor you talk to) and as others on the boards have mentioned, it feels like I am wearing a bra all the time or have a bungee cord around my chest. Often I feel like my chest is "suctioning" to my insides although my doctors have been able to move my skin and say that this is not the case.

I had 2 months of PT in the beginning of my recovery and have had regular chiropractic and acupuncture treatments throughout. I discovered myofascial release therapy 6 months after surgery and have been receiving that twice a week since then along with ultrasound and occasional cold laser treatments. I would say that my discomfort has gone down from a 10 to a 7 in the year, although some days it ramps back up.

I had a plastic surgeon this week say that a latissimus free flap surgery would correct the issue and that he could do that without reconstruction as I still want to remain flat. I am not anxious to undergo another surgery and have great concerns that it would only make everything worse, but I am not doing well with this daily issue. Have any of you without reconstruction had further surgery to become more physically comfortable?

Dx 3/2018, IDC, Right, <1cm, Stage IB, Grade 2, 0/5 nodes, ER+/PR+, HER2- (IHC) Dx 5/2018, DCIS, Left, Stage 0, Grade 1 Surgery 5/13/2018 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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May 19, 2019 07:27PM peyton3 wrote:

I had a bilateral mastectomy in 2016, followed by immediate reconstruction, was in constant pain, went back one year later and had implants removed, smaller implants put in over the muscle. In March of 2018 I had my implants removed mainly because I kept having these flare ups of extreme pain and my ribs felt like they were on fire. My PS said the implants had attached to the ribs and had to be scraped off, I am 9 weeks post surgery and like you my chest feels tighter and tighter. I hate the way I look, and the way I feel, but I have reached a point where I just don't now what to do. I see these pictures of women that have done the diep flap and I just don't know what to think.

Dx 7/13/2015, DCIS, Left, 1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR-, HER2-
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May 19, 2019 11:55PM SPDGirl wrote:

Peyton3 - I am so sorry to hear everything you have gone thru and are still going thru. Have you found any professionals that take this seriously and are willing to continue trying to get this fixed? Has your pain and tightness changed any for the better or worse after any of the surgeries? 

Dx 3/2018, IDC, Right, <1cm, Stage IB, Grade 2, 0/5 nodes, ER+/PR+, HER2- (IHC) Dx 5/2018, DCIS, Left, Stage 0, Grade 1 Surgery 5/13/2018 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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May 20, 2019 12:23AM - edited May 20, 2019 12:28AM by buttonsmachine

I'm sorry you're having those problems - I also have much of what you describe on my flat side.

My Drs suggested some medications that might help with that, such as gabapentin, lorazepam, and plain old ibuprofen or aleve. I haven't tried the gabapentin yet, but I have had relief from the others.

It seems like a latissimus flap might create new or additional problems - I'm honestly surprised a surgeon would suggest that as a possible fix. You might find this thread useful to read: https://community.breastcancer.org/forum/136/topics/788542?page=1

Finally, don't get too discouraged yet! Those feelings have lessened over time for me. Hopefully it will diminish for you too.

Diagnosed at 32. Local recurrences in skin one year later due to needle seeding at initial biopsy. Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Dx 10/2017, IDC, Right, Grade 3, 2/12 nodes, ER+/PR+, HER2-
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May 20, 2019 03:04AM wrenn wrote:

It’s been 5 and a half years since my mastectomies and I still feel like I am wearing a bra if I think about it. I mostly don’t notice though. I would give it more time. I was frustrated by it for quite a while in the beginning but didn’t want to go through more surgery. I hope it improves for you

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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May 20, 2019 06:16AM Rah2464 wrote:

SPDGirl - my oncological massage therapist (who I still see once a month) suggested that I massage castor oil at night onto my tighter areas where I feel cording, and along my scars. I added in a drop or two of lavender oil along with the castor oil and I am finding that very helpful. I put a cloth diaper over my chest after I have rubbed the oil in, then add a stretchy fitted tank top.

Very sorry you are having this pain (I always want to call it discomfort but lets name it for what it is). It is extremely frustrating, like a constant reminder that you have changed. I will tell you my issues began making a turn at the 10 month post surgery mark but that was also due to lots of PT, acupuncture, and massage with an experienced therapist. I wish you well.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/27/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/27/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 20, 2019 11:51PM SPDGirl wrote:

Buttonsmachine - thank you for the link to the surgery thread. It sure seems like the odds would be stacked against it working the way the PS described and being an instant and complete fix :( 

Wrenn - thank you for the encouragement! I hope I get to the point where I don't notice it either, it just is hard to imagine so far. 

Rah2464 - thanks for the tips. I have tried various creams, but not castor oil, so will give that a go! 


Dx 3/2018, IDC, Right, <1cm, Stage IB, Grade 2, 0/5 nodes, ER+/PR+, HER2- (IHC) Dx 5/2018, DCIS, Left, Stage 0, Grade 1 Surgery 5/13/2018 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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Jun 2, 2019 09:59PM Hopeful3 wrote:

hi Wrenn


I feel rib pain and swelling around my surgery site scares me because I go immediately to recurrence. I’m 4 years out.

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Jun 5, 2019 10:42AM jeaniept wrote:

There is a Facebook page called "Flat and Fabulous" that has been of so much help to me since I went completely flat in February of this year. A wealth of info on post-surgical pain and women will freely share what they did about it, including surgery. You will not feel alone there! You have to answer a few questions to become a member and it takes a day or two to be approved, but it's a great space for help, kindness, and understanding. Good luck!

Jeanie Dx 6/19/2009, DCIS, Right, 1cm, Stage 0, Grade 1, 0/3 nodes, HER2+ Surgery 8/30/2009 Mastectomy: Right Surgery 2/1/2010 Mastectomy: Right; Reconstruction (right): Silicone implant Surgery 2/2/2011 Reconstruction (right): Silicone implant
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Jun 5, 2019 02:20PM SPDGirl wrote:

Jeaniept - Thank you for the facebook information. I just submitted my information and hope to be a member soon :)

Dx 3/2018, IDC, Right, <1cm, Stage IB, Grade 2, 0/5 nodes, ER+/PR+, HER2- (IHC) Dx 5/2018, DCIS, Left, Stage 0, Grade 1 Surgery 5/13/2018 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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Jun 5, 2019 05:41PM - edited Jun 5, 2019 05:44PM by MamaOz

spdgirl

I had bmx no recon in May 2017

I had a lot of nodes removed from my rightside

I go to lymphedema PT periodically. She was able to work out the painful cording after surgery recovery , now 2 yrs later I still get a vise like tightness that comes and goes. Its an odd feeling. She says I now have some scar tissue blockage from the radiation which I was told tissue healing from rads takes years so it made sense

Like ill roll over in bed and my right chest seizes up its weird

Rah2464 has the right idea. Massaging oil or heavy lotion to keep sin pliable is what my PT recommends that and stretching my arm out to limber my chest area

I think its muscle memory keeps it retracting

Anyway understand youve had major surgery and muscle tissue and nerves were severed..

your body is still healing..


Mamaoz : chemo 1/.17-4/17 AC/.paxitacil : 3/29 nodes Dx 12/5/2016, IDC, Right, 3cm, Stage IIB, Grade 2, 3/29 nodes, ER+/PR+, HER2- Surgery 5/19/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 8/7/2017 Hormonal Therapy Arimidex (anastrozole)
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Jul 3, 2020 07:29PM cccmc2 wrote:

I had a unilateral mastectomy 2 years ago. No real issues this far. I did not get reconstruction. So the last week or so I’ve been having weird randommuscle tightening at the mastectomy site. I don’t feel anything concerning but this is new. I’m wondering if it could be caused from lack of activity. I’ve been out of work since the end of April. I wasn’t overly active but I did have a routine and worked 6 days a week. Just wondering if anyone else has experienced this. I see the breast surgeon for a follow up on 7/14. Thank you!!

Dx 3/30/2018, IDC, Right, 2cm, Stage IIA, Grade 3, ER-/PR-, HER2- (IHC) Surgery 4/10/2018 Lymph node removal: Sentinel; Mastectomy: Right Chemotherapy AC + T (Taxol)

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