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Topic: Swollen breast, told it can be permanent

Forum: Managing Side Effects of Breast Cancer and Its Treatment —

This is a place to discuss concerns, tips and strategies for all types of side effects from all types of medications and treatments, (chemo/rads/hormonal/targeted/pain meds/etc.

Posted on: Oct 7, 2019 01:36AM

gypsyscout wrote:

My treated breast, already larger than the other, is swollen and sometimes painful 6 mos after radiation and 1.5 years after surgery. Has anyone had this problem for this long and then seen improvement? My first radiation oncologist warned it can be permanent.

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Oct 7, 2019 06:13AM godisone wrote:

Its a very strange thing that you are telling me here. suffering for around 2 years post surgery is no joke. please consult your doctor and discuss your discomfort with them. let them know it and get this thing treated. Its too bad for someone to suffer this long. There is no healthy reason behind this pain and swelling.

God bless you honey and keep us posted.

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Oct 7, 2019 11:54AM Spoonie77 wrote:

Has anyone mentioned to you the possibility of Breast Lymphedema? With physical therapy and manual lymphatic massage treatments it can be managed and less painful. I would suggest asking for a Lymphedema specialist referral for assessment.

Hope you find answers soon. I feel for you!

"Spoonie" who entered BC World @ 41. DXd w/MS & Thyroid Cancer @42. Treatment: LX/SLNB/RADs. Plan A: 5mg Tamox = 0 QOL. Plan B: OS/AI = Rare allergy to OS meds. Plan C: Only option left,  Diet & Exercise. PS: Not a dr, just a Googler. Dx 7/20/2018, IDC, Left, 3cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Dx 8/30/2018, DCIS, Left, 1cm, Stage 0, Grade 2 Surgery 8/30/2018 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 10/1/2018 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 3/30/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 7/2/2019 Zoladex (goserelin)
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Oct 7, 2019 03:49PM Bounce wrote:

I too highly recommend a lymphedema specialist.

My treated breast was slightly bigger to begin with and the swelling after surgery and then radiation was very bothersome.

I thought lymphatic massage treatment would be unpleasant but to my surprise I was treated with dignity and compassion and it really helped me start healing physically and emotionally.

Dx 8/5/2013, IDC, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 8/31/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 11/3/2013 Breast Hormonal Therapy 12/31/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 7, 2019 04:15PM edj3 wrote:

gypsyscout I commiserate with you, I'm seeing a lymphedema specialist but neither of us think my swollen breast is lymphedema or a seroma. It's visibly bigger than the non-operated breast and it hurts all the time.

My RO and my BS both said the breast w/ the cancer & radiation would shrink up so the swelling was a good sign I'd end up with similar sized breasts. But surgery was five months ago and radiation's been done for three months and my breast is still swollen.


Tried the tamoxifen, no thanks. Dx 4/9/2019, DCIS/IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 5/5/2019 Lumpectomy; Lymph node removal: Sentinel Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Radiation Therapy 6/2/2019 Whole-breast: Breast Hormonal Therapy 9/22/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 7, 2019 05:51PM Betrayal wrote:

My RO told me that radiation can cause changes in the breast for a year. Have you asked RO about breast fibrosis secondary to radiation? Pentoxyffylline and Vitamin E can be prescribed for this. I would contact the RO and ask to be seen.

Dx 1/7/2016, DCIS/ILC/IDC, Left, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 1/31/2016 Lymph node removal: Sentinel Surgery 1/31/2016 Lumpectomy: Left Surgery 3/3/2016 Lumpectomy: Left Radiation Therapy 3/31/2016 Whole-breast: Breast Hormonal Therapy 6/24/2016 Arimidex (anastrozole) Hormonal Therapy 5/18/2017 Femara (letrozole)
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Oct 7, 2019 06:06PM ruthbru wrote:

It can take a LONG time for things to settle down. It is definitely a good idea to check with a lymphedema specialist if you think that might be the problem. If it's not, it really can take a year or longer (think maybe 2 years) for things to get back to 'normal'.

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Oct 15, 2019 01:21PM Numb wrote:

I had radiation about 3 years ago and my treated breast is still swollen and can be painful. I have just learnt to live with it. It is not unbearable.

Dx 2/15/2016, ILC, Right, 2cm, Stage IA, Grade 1, 0/1 nodes, ER-/PR-, HER2-
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Oct 16, 2019 12:26AM gypsyscout wrote:

Numb, that is my fear. I'm pretty sure it isn't lymphedema because I had that after surgery, but I can go back to my therapist and ask about this situation. The widespread lymphedema was short-lived, I discovered when an emergency bowel resection stopped everything. Betrayal, I will ask about fibrosis. I haven't seen anything about that, but my new RO has me taking vitamin E. All, thanks for the input. It's comforting to have support but disconcerting that this problem really can last for years. It would have been better if the smaller breast had been treated.

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Oct 16, 2019 11:46AM MinusTwo wrote:

gypsy - Lymphademea can start or re-occur any time in your life. Like even 20 years out after either surgery or radiation. My RO is the one doc who was able to pinpoint the problem - breast & truncal LE. Take a look at the website below if you haven't seen it before. It was created with lots of input from BCO members. Whatever it is - do get it checked.

https://stepup-speakout.org/


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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Oct 16, 2019 11:53AM edj3 wrote:

It's super annoying to have so much discomfort in my left pec and armpit and to have my left breast be visibly bigger than my non-cancerous right breast. If I fit the left breast, my poor right breast is not supported at all which isn't comfortable when I run. And if I fit the right? I bust out all over and my bra cuts into me on the left side.

I hate being lopsided.

Tried the tamoxifen, no thanks. Dx 4/9/2019, DCIS/IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 5/5/2019 Lumpectomy; Lymph node removal: Sentinel Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Radiation Therapy 6/2/2019 Whole-breast: Breast Hormonal Therapy 9/22/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 16, 2019 12:52PM - edited Oct 16, 2019 12:54PM by gypsyscout

Thank you, Minus Two! I will call and ask to go back to the people who helped me before. I don't know how to handle it when it is this localized. BTW, I grew up in Huntsville. Hi to SE Texas.

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Oct 16, 2019 12:57PM gypsyscout wrote:

Exactly, edj3. It makes me crazier than I know it should, but confining the right one gets really uncomfortable and I don't want to pad the left one for a better match.

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Oct 17, 2019 06:21PM ruthbru wrote:

Insurance will pay for a partial breast prosthesis. I wore one of awhile until everything settled down and the fat shifted to fill in the gaps. Here's a story that might be hopeful; I saved a favorite swimsuit just because I loved it. For the first TWO years after my lumpectomy & radiation, there was no way I could wear it because I was so obviously lopsided. The third summer I was going to up it in the Goodwill bag, but tried it on just for fun.......it fit fine and I was able to wear it again!! So.....the changes will be slow, and maybe not that obvious, until one day you may be pleasantly surprised by how 'normal' your breasts have become.

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Oct 23, 2019 10:11PM gypsyscout wrote:

I went to a lymphedema specialist to see if that was the problem and she confirmed it. I'm back to the self-massage I was doing after surgery except for the hand and arm work. I'll see her once more to see if it's working -- that is, if I'm doing it correctly -- and then go on until the breast reaches an appearance that resembles what it was before. It's a bit of a pain and includes money for compression garments, but it's a relief.

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Oct 23, 2019 11:07PM DorothyB wrote:

My breast was also huge after surgery & radiation, but has now been drained twice and is back to "pretty much normal" size after draining. If it starts to swell again, I will be trying to find lymphedema pt specialist even though surgeon isn't thinking it is needed.

Diag. 4/19/2019 ER+ PR+ HER2 neg Lumpectomy 5/29/2019 IDC w/ DICS 2.0 cm Grade 3

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