Will the tight feeling ever get better?

[Lotsofsiamese1]

Hi this is my first time posting.. I had a mastectomy last February.. two rounds of chemo before and 30 rounds of radiation after. My tumor was large and had attached to my arm muscle..My chest is dented and feels like a drum head stretched to tight.. I’m wondering if this feeling will ever go away.. still waiting to to find out if I’m in remission..taking Ibrance and fasoldex shots..

[Teddielottie]

Welcome on here ! I’m sure you will get lots of information from all the ladies... it’s a wonderful site!

I had a right mastectomy and axillary clearance ( 16 out of the 18 nodes were positive and my tumours covered 10cm ) just over 2 years ago and though I don’t have any pain or discomfort now , I am still numb in the area where I had the axillary clearance ... I believe it can affect the nerve endings when they have to go so deep . But as long as there is no pain , I can live with this ...I take care on my right side not to lift anything heavy ( over 3 kg ) and ensure my bloods or blood pressure are always taken from my unaffected left side , and so far have avoided lymphodema.

I didn’t have radiation or chemo , as I went straight onto Ibrance/ Letrozole , as it had just become available at that time on the NHS here in the U.K. . I am fortunate to currently still be stable on this combo after 2 years , and I wish the same for you too x

[Red1246 in reply to Teddielottie]

Having begun ibrance and Letrozole only 3 months ago, I’m delighted to hear you’ve been on both successfully for two years. Congratulations! I know everyone metabolizes these drugs differently, but wonder if you have continued side effects?

I’m having hair loss, neutropenia and am often very fatigued. I know many suffer these but wonder if they continue to be a problem once the body is accustomed to them?

Thanks so much and again, great news that you’re stable and doing so well! Red

[Teddielottie in reply to Red1246]

Thank you and I hope you soon adjust to the new combo !

I would say my side effects were at their worst in the first four months of taking these , but with time I have come to tolerate them and they have reduced significantly . My hair thinning lessened around the 8th month , just the texture became much drier. I am fortunate to have (so far) not suffered neutropenia and my bloods have always remained good . My onc even agreed to me having a breast reduction op on my non - affected side while on ibrance treatment ! I only get a little more tired usually around the third week of my cycle, but I just pace myself if this happens . I don’t know why I have tolerated it so well ... I am 56 so somewhat younger , I haven’t taken supplements or alternative medicine or done anything other than the Ibrance / Letrozole meds prescribed by my onc . I’m hoping it continues but I realise that most people have to change meds at some stage ...just hope it’s not too soon ! And I wish the same for you too ... just hang in there and give it more time x

[hopenowandtomorrow]

Have you had physical therapy on your arm on the Masectomy side? That helped me tremendously to have less pain & full range of motion. ❤️🙏❤️

[Lotsofsiamese1 in reply to hopenowandtomorrow]

Yes I’ve had PT.. did not relieve the tightness but it was more focused on the lyphodema in my left arm..

[Justme153]

Hi welcome but wish you didn't have to be here!!! I had a left mastectomy and axillary removal in March of 2017. My tumor was large and touching my pectoral muscle so they had to remove some of it to get clear margins. Only one of the nodes came back suspicious all the rest where clear. They did a latisamus flap and skin graph to be able to close because of how much they had to remove. I did 30 rounds of radiation no infusion chemo. My onco dx test came back 16 so my oncologist said the benefits of chemo weren't enough to justify the side effects. I had started taking arimadex the beginning of February 2017 and remained on that till January of 2019. In Dec of 2018 I had opted to have a total hysterectomy (I'm 61) at the encouragement of my gynecologist. At that time they found a spec in my right ovary so I was then MBC. They ran all sorts of scans again nothing else showed up so all they did was switch me to Letrolzol instead of Arimedex. As far as my arm and chest go I still have discomfort (not pain) . When I wear my bra it irritates the scars from the mastectomy and latisimus flap. I will say it seems if I am doing more movement in a day walking biking cleaning what ever it actually feels better. I think it's because it gets all the fluids and lymph system flowing. If I'm not doing as much like reading watching tv board games with the grand kids then it seems to feel heavy swollen numb. It's really hard to describe the uncomfortable feeling. I do have great motion with my arm considering the first day or two in the hospital I literally had to lift my left arm up with my right arm I had no control of it. When I would do the hand crawl up the wall I couldn't get it back down unless I lifted it down with my right hand. I think in all the amount of feeling and maneuverability you lose or get back just depends on how extensive the surgery is . I can totally forget about mine at times if there is a lot going on but most days I feel it just uncomfortable enough to keep me trying to find a good position to be comfortable. Sorry this is so wordy but I wanted to try to give the full picture for comparison . I also have that tight feeling like I have compression garment on to tight. Sometimes when I lay down on my right side I have to stop and sit back up because it feels like a cramping thing going on. This happens also when I move certain ways .

[Staysha]

So glad you asked this question. I had a right mastectomy in October 2019 including all lymph nodes. I have the same feeling. Sometimes when lay down I feel like my shirt is pulled to tight across my chest but it’s not my shirt. I’m about to have sbrt on my lung met. I had the 4d ct scan simulation yesterday and had to hold poles above my head on the table for quite a long time. I couldn’t do it. Had to put my arm as high as I could. It pulled my chest and down my side terribly. I did it but it was not comfortable. You’re further out from surgery than me so you know more. But you’re not alone. I’m so thankful for this group. It makes me feel like we are all in this together.

Stacy

[mariootsi]

I'm still having tightness. My first mastectomy 6 years ago and my recent one in 2018.

Numbness where lymphnodes removed on both sides and tightness.

[Hidden]

Yes, it will improve but it takes time. In addition to the recommended PT, wait a few months after surgery (4-5) for all the swelling and scar tissue to heal and find a good massage therapist who focuses on myofascial work.

You of course are past that time so now is appropriate to try myofascial massage therapy. That was the turning point for me. My massage therapist is terrific and it makes a nice difference. I see her every 2 months and it continues to help.

I personally find doing a gentle back stroke in a pool helpful too. Mastectomy in 2004.

[13plus]

Hi there, you don’t mention if you got an implant or any reconstruction? Either way you will have scar tissue after any surgery so stretching every day is absolutely essential.

It could be that you also need a specialist massage too . make sure they are trained to do myofascial release and know how to work with those who’ve had radiation. Putting pressure the wrong way could potentially aggravate the lymphatic system which you want to avoid.

I believe Livestrong website probably has exercises to do if you can’t go somewhere. Otherwise Therapeutic yoga should work wonders. (Fairly passive but allows for good releasing)

Well trained pilates teachers are also great but you need private sessions so cost may be a factor. Reach out to me if you have more questions on this!

[Lotsofsiamese1 in reply to 13plus]

I could not have reconstruction at this time.. the cancer had moved into my skin.. they said I’d have to wait at least a year.. not sure if I will do it then.. I am considering trying yoga..my other problem with exercise is I have neuropathy in my legs from the knee down.. I was taking meds for it before chemo but the Taxol made it much worse😬