Saw my surgeon this morning and he is pretty sure that the pain I've got in my left breast is due to the longterm effects of radiotherapy. He seemed to know exactly where it is and wasn't at all concerned. What a relief! He did however suggest that I have a bone scan, just to make sure. Seems a slightly odd thing to suggest, but I have asked for that before without success, so I don't mind. Better safe than sorry. 😉 He also suggested that in a year's time he could do some reconstructive surgery to even out the various dents left by the lumpectomy and SNB, using fat to fill them in (I've got plenty to spare round my middle - maybe he can use that!? 😁). Has anyone else had this done?
Well done for making that phone call and getting that mammogram done (I hate mammograms 😫). I did the same today and have now got an appointment for Friday. I'm still feeling very apprehensive, but it's a good first step to getting myself sorted. What I really want, what we all want, is for someone to tell us that the cancer will never come back, just enjoy your life and forget about it. But that's never going to happen of course. I have to say that the nurse I spoke to was lovely and didn't hesitate to book me in, despite everything that's going on. So, in the absence of that cast-iron guarantee that never going to materialize, I guess I am grateful for the support my medical team have always given me.
I do wonder if you've got a point about bras. I finally got myself properly measured and fitted a few weeks ago and acquired some really comfy, pretty bras (and got rid of some truly atrocious post-op ones 😂). But weirdly the aches I've had have been more pronounced since then, as if my boobs are protesting at being better supported and would rather just have continued to hang! 😆
I have mentioned in a previously post about my on/off breast pain 3 years on from surgery. I found that most of my family and friends were so positive around me that they rarely asked how I was and all I got was how wonderful I looked. I must say that I drink quite a lot of water anyway but was told to by my specialist and a friend who had recovered from breast cancer - Also, told by my specialist to keep exercising, which I did (walking 4 times around the block morning and night). I think both the water and the exercise (I usually exercise anyway) definitely helped me a lot, although I did have side effects. One lovely wheelchair bound friend that I used to see at my coffee group every Tuesday was the opposite though and asked me every bit of my treatment and how I felt every time I saw her, bless her, which was not my aim of going for coffee but she's so lovely I chatted freely about it even though I didn't want to (not sure the others liked it though). I personally think, in my experience, that most people feel that you are going through enough without them talking about the treatment you are having so they want to cheer you up. It was strange that the friends I spend most time with were the ones that contacted me the least though.
It's 3 years since my lumpectomy. I had no pain at all until recently and get it sometimes on the side near my arm and the side between my breasts (where my lump had moved to) - I wear a normal bra most of the time (not one with the pocket for my false piece to even me up, which I choose not to wear most of the time - That could be the problem). I have noticed it seems to depend on what bra I've worn and if I've slept on that side my arm seems to go into the little dent area so I have to adjust my sleeping position. I mentioned the pain at my 3rd Mammogram 2 weeks ago and was told to mention it to the doctor if I was worried, which I will. One thing I can say is that in my experience the worry of not going to get things checked can often be worse - I was worried about going into the hospital for my Mammogram and because of Covid, (even though friends had said how safe the hospital was) - So I wore both a Mask and a Face Shield and that solved the problem. I set myself a day and morning to ring for my appointment and was so glad I did and felt proud of myself for overcoming my worry. Hope this helps. Big Hug.
He sounds a bit of a character, for want of a better word lol. But as long as he is good at the rear of his job that's all that really matters. Let's hope you don't have to see him or any of them again once you've been discharged x
Most of my breast care team are lovely. My surgeon memorably compared my lumpectomy to going fishing which neither I nor my husband found particularly funny or reassuring. The day he gave me the diagnosis, he didn't even say good morning, but just said 'you've got cancer' as soon as I entered the room. But I think he's very competent in actually doing the surgery, making a diagnosis and assessing treatment. And anyway, I'm hoping not to have to see much of him in the years to come. 😏
I think I know what you mean. You have to detach to get through it. I am blessed with a very kind surgeon you're right and my bcn was fabulous too. She has since retired but everyone in the department is super helpful. I've since found out from different forums that this isn't the case everywhere. I naively thought it would be. How disconcerting to have a surgeon with a strange bedside manner though! Well done on your new and positive outlook on liking your body again. I personally detest my legs 😂
You've clearly got a very kind surgeon, Snottydotty! My surgeon is medically very competent, but has very odd bedside manners. He's always seen me, when I've needed help, but he makes strange jokes and I have never really warmed to him. My BCN is, however, really lovely (though sadly totally over-stretched), so I try to speak to her in the first instance. In fact I will be phoning her on Monday about my various aches and pains; don't want to do it this half term week, as I want to spend the time with my son.
I have been doing a lot of thinking about where I am in my recovery and one thing that's struck me (after reading an article on Becca), is that I have completely distanced myself from my own body. In order to get through the treatment and the embarrassment of having so many strangers prod and poke my boobs, I think I somehow just withdrew from my own body. And now, I don't trust or like my body very much! So, in addition to getting myself checked out by my BCN, I've decided that it's time I took control and start liking it again, in small stages (my legs and arms are lovely, not sure about some of the other bits 😁). Mostly, this will probably be a matter of changing the way I think about my body, but I'm slowly hoping to reconnect to the bits I feel detached from and sort out those I feel negative about. Don't know if this is making any sense or maybe I'm just waffling?! 😂
But you must always go if in doubt. I found something in July and got to see my surgeon but on the day in question, I couldn't find the tiny lump and neither could he. That very night I put my hand straight on it. Anyway I couldn't bring myself to phone them again and tried not to worry about it. That didn't work! Ended up having to phone them again, feeling ridiculous. I even asked them not to tell my surgeon and to let someone else see me. Anyway I had to see him and he could not have been nicer. We found the lump and it was scar tissue. I apologised if I'd wasted his time but he assured me that he is there to investigate ANYTHING that is worrying.
I totally agree it’s a worry and it is very uncomfortable to live with at times . I got a phone call which said it’s nothing sinister thank his , but today the letter came and it said it was a mass of scar tissue with a haemorrhage, it says because it’s been 5 years I no longer need yearly mammogram and if I’m worried in future I can contact them through the two week route through my gp route so no number to call if I’m worried .I had it drained but it’s already hard again , you feel a pain if you keep going to gp so it’s good there is a place where you can chat to others, it’s put me off going to GP in the future as you feel like a nuisance and obviously you just have to live with it don’t you , take care x
Hi you are very lucky no to have pain, it is 5 years in April since my lumpectomy and I still have a lot of pain in my breast. I think it depends on where the lump was, mine was very deep so I had a lot of nerve damage. I saw my consultant a couple of months ago and he explained it to me. 🌺
That is good news! 🤗 What a relief for you! Thanks for sharing your results with us. I hope the treatment you've had will make you a bit more comfortable.
Hi all re-update on my biopsy, I have been told it is a Seroma ,I had a pocket of fluid with a mass of tissue the mass 24mmx 29mm was scar tissue nothing sinister ,if I had some advice after surgery about this complication I may not have been worried. The fluid has been taken away , they can’t say it won’t come back ,massage and compression bra may help , they are going to keep an eye on me as I may develop lymphedema in future ,thank you everyone for your wise words and concern. Xx
Thanks for your advice, Snottydotty. I've checked the scar tissue and it does come back up when I press it, so that's good. Still, it's all the other lumps and bumps, and the constantly shifting aches that are driving me crazy. I know you're right: I need to contact my BCN, if only to calm myself down. It's interesting you were offered an ultrasound. That's so much more preferable than a mammogram - I hate those, they're just so painful. I'll see if I can have that instead if it's needed.
It was explained to me that the way to tell if it is scar tissue is to press it. If it levels out it is. If it remains rigid it need to be investigated. I recently had to go back to my breast care unit for a small bit of tissue I found that didn't level out. My surgeon said immediately that it was scar tissue. He did explain why some doesn't level out but that went over my head! He arranged an ultrasound to put my mind at rest and of course he was right. I agree we are left high and dry once treatment stops so all the more reason why you need to arrange an appointment. I arranged mine by calling the breast care unit direct. 2
Like you I'm TN and like you I find it hard to push the constant worries about recurrence away. I really hope that the tests you had come up with nothing! Back in March I had quite severe breast pain and was lucky to be offered a mammogram by my surgeon just before lockdown. It turned out that the various lumps I could feel were just scar tissue, but that's the problem really - how do you tell the difference between that sort of pain/lump and something more serious? Right now I've got pain around my scars again and don't know whether to contact my BCN. My BCN did say I should contact her if I have any concerns, but I feel that I don't want to bother her with every new pain. Being TN and unable to take any longterm medication definitely has some advantages, but it sometimes also makes dealing with these worries hard, as I feel I've got nothing to help me fight recurrence.
Being able to post here is helpful, but like so many others on this forum I wish there was more on offer in terms of longterm aftercare. The first few weeks following treatment were ok, as I was exploring various free things on offer such as acupuncture and yoga, plus I felt so relieved to have got through everything and having been given assurances about my good prognosis. But now, 16 months on, that support is no longer there, and that's when I could really do with it.
I have been experiencing pain under my arm and across my breast for a few months , I was diagnosed with triple negative breast cancer 2015 I had chemo , radiotherapy and lumpectomy and a couple of lymph nodes removed I made good recovery but last May I had some more surgery as I had problems with sinking on one side of my breast and scar tissue, I had a lot of tissue removed but it’s been a problem really since.I found in last 2 months real pain in my underarm and across my breast , I could feel a lump so I went yesterday to breast clinic and I’ve ended up having scan and needle biopsy and some fluid removed I get my results next week , I’m praying it’s not a second cancer, but you have to trust your instincts, you know your body and if things aren’t right , it’s so hard trying to live with with this, its always in the background you try to get on with your life but it never goes away.I also got a chemical menopause thanks to the chemo and I think there should be more sites like this where you can talk to others who feel the same and can empathise, I dont tell my family or friends how I feel because I don’t want them to worry them. I wish there was more about the aftermath of Breast cancer and complications and for people who can’t have HRT as I can’t because of the cancer being TN .
Am so with u about pain. Any ache or pain and I'm terrified.
Bit pretty much sure its nothing or in my head. I still have tenderness numbness from my op. Finished treatment in January this year. Keep positive and any worries see ure doctor. Due to what uve had they are pretty much easy to contact or see, even with what's going on.
Stay safe. Stay sanitised. Stay positive
It sounds like lymphedema. Have you tried a compression bra? This one is good quality and comfortable and works great: https://www.lymphedemaproducts.com/products/medical-breast-shapewear.html.
I'm two years post Stage 2A IDC Grade 3 with two lumpectomies(the second to get clearer margins), and sentinel node biopsy. I choose not to do chemo, since I have my own medical office and prefer to continue living with my nerves intact(somewhat) and to keep the chemo that stays toxic more than 25 years out of the Columbia River, which flows right by my town. It's easier if you're 65 to make those kinds of decisions....Anyway, hope the compression bra helps--I still wear mine for sometimes a week at a time, off and on, when the pain starts. A patient of mine, a year and a half post stage 1 IDC with lumpectomy and radiation, still wears this bra most nights when she feels it coming on--an uncomfortable, heavy, tender feeling, that can make you feel somewhat physically ill. Lymphedema of the breast is quite common, but for some reason, it is rarely mentioned as a potential problem, by surgeons or oncologists. Even if you can't see the swelling, your body feels it.
Best to you!
I had my surgery in September 2018 and still have discomfort. I constantly feel like I have a drawing pin stuck in my boob where the cancer was. Constant little pains and sore breastbone and ribs, back too. If I don't use my affected side arm it starts to feel like cording is coming back. I have to sleep on my tummy so use a pillow to soften the blow, so to speak! Hugging is uncomfortable and mammograms are actually painful. Not sure why it's all so sensitive, it drives me crackers. I had an (abdominal) hysterectomy 10 years ago and was moving furniture after six weeks, recovering from that was a walk in the park compared to this and all the issues from treatment I've been left with.
Hi lovely ladies,
I finished treatment 15 months ago (chemo, lumpectomy & SNB, 20 rounds of radiotherapy) and as I am Triple Negative, am not on any medication. It's been a huge comfort and relief to read all your posts. I too have various aches and pains in my left breast, which seems to change both in intensity and location all the time and right now are extending from my breast down my left arm and hand. It's the unpredictability of when, where and why that I find difficult to cope with. I seem to go for weeks with one sort of ache, then it changes and pops up somewhere else - which inevitably gets me worried. Once I've managed to calm down a bit, my problems rather weirdly often subside. Right now I'm trying to calm down after panicking about the latest pain (feels like muscle ache and slight stinging pain at the top of my breast, so not even near my scars) and reading about all your experiences really helps me with that. As always, I'm very grateful for this forum.
Hi I’ve had chronic pain since lumpectomy 18mths ago as well. I also have been fobbed off by surgeon, oncology, & physio.
my pain is a burning sensation. I have just had nerve conducting testing but it came back fine. However he said that only picks up large nerves, I could still have a hundred small nerves playing havoc. It’s just the not knowing.
Thank you for your post. I too finished my radiotherapy Jan 2020, sometimes my breast is tender, sore. Other times it is fine. I also aching in joints and tire very quickly. Reassuring to read the posts as I am 64 and do not want to go visit the hospital due to covid.
Take care, keep safe, Angela xx
I am grateful to God that I have never encountered this, but I read the reviews of people and it seems to me that this is completely normal. In any case, I think that such things are best discussed with doctor becaise there are a lot of unskilled people on the forum and their advice can only do much harm. I just want to share my experience. I use Kratom capsules from Kratom rank vendors from pain all the time. This method helps me a lot. Sometimes I also use kratom powder and add it to tea. It relaxes nerve cells and you do not feel pain. Kratom is just an amazing medicine!
I'm in constant pain and had to endure a mammogram. It wasnt anywhere as bad as I thought. I think for me it's a constant reminder I'm still alive and have survived. I am sure it will only get better.
I have been googling breast pain 18 months on from treatment and ended up here! I know you posted this a year ago, but reading it has helped me as I’m gripped by the fear. The aches pains and soreness have been freaking me out!!! No one at the hospital tells you about this, and they have fobbed me off, so I’ve been suffering and worrying alone. Just wanted to share what a help this post has been!
Sorry to hear of your probs.
I finished my last radiotherapy beginning of Jan. I have a very sensitive breast and still so much numbness for the surgery. Most of my upper arm and armpit so numb. I'm trying to find wireless bras to help with the discomfort. Terrible aches in all joints. I've aged 50 years since surgery lol but am out walking every day and painkillers normally do the trick.
Know what you mean about lockdown again, I got my 6 months practice in last summer.
Take care lin x
Do you have a link for the compression band? I have been given some padding with cubes of foam in it to put in my bra, it is supposed to have a massage effect and help fluid between the breast tissues drain away. I have been using it for a week now and the pain is less and suppleness as improved. I thought the compression band would be good to sleep in for support - not that i have a large bust - and maybe stop fluid build up overnight.
Have you tried mometasone for the itchy rash? Using it during radiation treatment, and after, when my skin flares up, has worked great for me.
A compression breast binder might help. The pain is likely secondary to lymphedema and radiation damage(reconfiguring the fat beneath skin, reducing suppleness. I'm 20 months out from lumpectomies and radiation, and a bit of lymhedema, hardly perceptible by observation, makes my whole side hurt, from chest to hand--even to the other breast. The pain subsides immediately when chest is compressed. I put it on after I get home from the office and sometimes sleep in it.
Expand A Band breast binder is the brand in the US.
Also, there are some good DIY lymphedema massage sites out there on the internet.
You should not have to wait so long for results. My doc has patients wait in the office for no longer than half an hour to get results right then. Blessings
My oncologist is also located in a hospital filled with corona patients. Their lab has one technician currently being treated for the virus. What a scary situation with those of us with any health problems.
Two years after lumpectomy my breast is very tender, like a sore muscle. Because of the virus situation I am scared to ignore this as well as scared to see my doctor. Suggestions, please.
Thanks so much for your messages!!!
i have a question - has anyone else had tailbone pain/discomfort whilst on tamoxifen? No matter how many reassurances I get (scan included) I am so worried as it is persisting.... xxx
I had my surgery in Sept '19 followed by radiotherapy which finished in Dec. My breast still feels very sore and my nipple has changed shape on the surgery side. I mentioned this to my consultant who is sending me for a scan. She said it is probably still settling down after all the treatment. I have been really worried but after coming on here and reading some of the post it is reassuring to me to know that a lot of women have had some sort of breast pain and swelling long after their treatment finished and it seems to be quite normal.
I am not on Tamoxifen but still have Herceptin and Pertuzumab every 3 weeks, these are due to finish in June.
I am still going to go to the scan appointment even though i am anxious about visiting the hospital due to the current virus because it is the same building that the Covid patients are in.
I feel just like you with things at the moment being like Deja vu. Was just getting back to 'normal' then back at home again.
It is one worry after another and it's hard to know what not to worry about. You should call your bcn if you're worried about the puckering so you can have your mind put at rest. My bcn told me never to put my health at risk out of politeness 😊.
Thanks to all of you for posting on this subject - I stumbled across these posts just when I needed them!
I had lumpectomy and node clearance in December 2018, 6 rounds of chemo and then rads - finished active treatment in July 2019 and am now on daily Tamoxifen. I returned to full time teaching in September 2019 and have been exercising and running loads and generally think I'm doing quite well - I am 48.
BUT - OMG, these aches and pains!!!!!!!! Firstly, they like to mix it up don't they? They don't stay in the same place! Feet, hips, shoulder, tailbone (so bad I needed a bone scan, which came back clear) and then of course, the breast!
My affected breast has done ok shape wise - my lump was 3cm and my scar has healed really well - some hardness where scar tissue is which was actually eased by a scar tissue massage therapist (will resume appointments with her once lockdown eases). I've had regular breast exams and a clear mammogram. When I run my breast does change shape (!) but settles after an hour or so.
But yesterday, I was looking at my self in the mirror and I am sure my scar area has changed shape again- more of an indent, a bit puckered. And so, I freaked out again! I just cannot cope with the constant worry - it is literally one ache eases, and a new one begins!!!
I do call the BCN whenever I feel worried - not too often - and they are very supportive. But only spoke to her a few days ago about my tailbone - if I call her now about my breast, I'm sure she'll think I'm a hypochondriac!!!!!
I hope everyone is coping with lockdown - it has certainly given me far too much time to worry - and, like I say, I had gone back to work full time and was LOVING it - this seems like deja vu, stuck back at home agin! Bring on real life again!!!
Much love, T x
yes its weird, never 100% pain free but some days seem better than others. mornings are best and by end of day I am in so much pain I just go to bed to not have to deal with it!!!
Yes definitely mention it. Even if by April you think things are getting better. I have found that just when I think it's got better, I do something that makes it worse again. Using weights at the gym, for example, definitely made my shoulder worse. And I'd only gone there thinking it would make it stronger!! xx
Thank you for the response, it helps me put my mind at ease. I had also tossed around the nerve damage possibility as my lump was way down in the breast by the chest cavity. I see my BC in April and will talk to her again about it!
I think it is nerve damage that can be caused by the op and / or radiotherapy. My neck and shoulder pain is still there and I didn't have any lymph nodes removed so it can't be that for me. Oncologist said nerve damage is common. Plus years ago I had a shoulder problem and I think the position they put me in during the op may have brought that back again as I bet they position your arm over your head. Every pain is a worry though. Glad you have had tests to put your mind at rest but hope you find a away of managing the pain now. At my first mammo post treatment I mentioned the discomfort to the BCN at my review and she said she could get me physiotherapy if it didn't go away. But I never took her up on that as I work full time and was reluctant to have more time off. But if it's an option for you, please speak to your BCN. Good luck! xx
The bras are a real issue. I am also more than amply endowed and have not been able to find anything that does the trick. I’ve gone back to a Wacoal wired sports bra. The wires are on the outside of the bra as a separate frame. Not quite as uncomfortable as others. When I don’t have to go out in public, I wear Leading Lady front hook bras, but the support is laughable. I have also tried ordering from Decent Exposures. They aren’t pretty but they are comfortable and they will customize for you. They don’t have separate cups though - there is a strip of fabric in the middle to “separate” but I cut it off and use that bra to sleep in. I really like it. I started using Miaderm again (used it during radiation and for a couple of weeks afterwards). I have noticed that I have less itching and fewer shooting pains. I have started putting it on the scar from the sentinel node removal - that is still the sorest spot though surgery was more than a year ago - end of October 2018. Note that I also use CBD oil for arthritis and that could also help with the residual post-surgical pain.
I had lumpectomy 11/11/19 radiation 12/16-1/21/20 and am in increasing pain. Chest tightness and pain (hurts to turn head along top of chest just below neck) weird tingling shooting pains through center of chest that come and go all the time, back and neck pain. Been to heart, lung, gastro, breast surgeon, radiation doctors- no one finds anything, someone has mentioned Costochondritis but not how to manage it!! Maybe fibromyalgia?? Pain is real snd becoming debilitating! Help!
I just wanted to add that I am comforted by this thread! I started having worsening pain about 10-11 months post surgery, which was a few weeks ago, and I have been worrying about it - but frankly too exhausted from the constant pain to try and gather my thoughts about it. I wondered if it could be where I had overdone it with a too heavy weight at the gym, or whether on doing my monthly self exam I had prodded too hard... I haven't really felt comfortable since surgery (large boobs = not well supported in non-wired bras, even top end, expensive ones that promise good support!) and has just about got used to the aching. And then it started to actually hurt a bit and of course I started to worry. I think that it's an evolving situation (fingers crossed...)
Thank you all for posting about this xx
i had my first mammogram after 14 months too but they found micro calcification underneath on surgical sites, they want to remove the white specks for biopsy test but it’s very difficult to get it out because it’s on my surgical site so they reckon it might be during the surgery or radiotherapy and it’s 100% benign so they will monitor me every 6 months, having mammogram this coming Thursday hoping it’s gone.
I had my first mammogram 14 months after the surgery - it came back clear. I hope yours does too. Wishing you all the best.
I got the same situation as you, occasional shooting pain and lumpiness. I had lumpectomy last June 2018. Just wandering if this is normal. I’m having my mammogram on January 30 hopefully nothing to worry.
Thanks for your post. Fifteen months post lumpectomy and 10 post radiation. 17mm tumour, sentinel node only removed and clear. Similar to what you describe - occasional shooting pains, lumpiness, and fierce itching which began only recently. Indeed, as my surgeon says, radiation is the gift that keeps giving. My first post surgical mammogram, done 14 months after surgery, was clear, so not worried. Mostly I try to ignore it, but not so easy sometimes. Trying different creams - have even gone back to using my leftover Miaderm. They tell me it gets better -
Wishing you all a good new year, with good health at the top of the list.