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Breast pain 18 months after lumpectomy

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Re: Breast pain 18 months after lumpectomy

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.

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Re: Breast pain 18 months after lumpectomy

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.

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Re: Breast pain 18 months after lumpectomy

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

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Re: Breast pain 18 months after lumpectomy

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.

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Re: Breast pain 18 months after lumpectomy

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.

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Re: Breast pain 18 months after lumpectomy

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

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Re: Breast pain 18 months after lumpectomy

Hi Truccles

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.

 

Take care 

Debi

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Re: Breast pain 18 months after lumpectomy

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 😊

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Re: Breast pain 18 months after lumpectomy

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

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Re: Breast pain 18 months after lumpectomy

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!!!

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Re: Breast pain 18 months after lumpectomy

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

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Re: Breast pain 18 months after lumpectomy

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!

 

 

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Re: Breast pain 18 months after lumpectomy

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

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Re: Breast pain 18 months after lumpectomy

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.

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Re: Breast pain 18 months after lumpectomy

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!

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Re: Breast pain 18 months after lumpectomy

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

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Re: Breast pain 18 months after lumpectomy

Hi, 

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. 

 

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Re: Breast pain 18 months after lumpectomy

@Bungee

I had my first mammogram 14 months after the surgery - it came back clear. I hope yours does too. Wishing you all the best.

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Re: Breast pain 18 months after lumpectomy

Hi, 

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. 

 

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Re: Breast pain 18 months after lumpectomy

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.

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Re: Breast pain 18 months after lumpectomy

I too suffer from breast discomfort, shooting pains, aches etc every so often 2 years post lumpectomy. Only had sentinel node biopsy which was clear but the scar gets achy and sore at times. I had to lose nipple as lump was too close and only 3 weeks ago I had the last bit of nipple reconstruction-the tattooing. This seems to have woken up some nerves! It got very sore towards the end but I’m pleased with the results. What I have noticed though is I’m getting warm sensations on and off in that breast now. Not had that for a long time. No pains as such. Does anyone else still get warm sensations? Wondering if the tattooing has irritated nerves or something. BCN examined me last week at check up and everything good. Didn’t mention warm feelings though as it hadn’t happened then. BCN said women can have aches, pains etc for years. Shame no one bothered to tell us and stop many of us being so very scared our cancer was back. Same goes for long term, late side effects of radiotherapy. I escaped chemo as lump was only 8mm and no nodes involved. Am on the delightful Anastrazole though. Was great the first year or so and no side effects. I’m sure  making up for it now. Apparently late side effects of Anastrazole is common too. 

Take care ladies and any men. Look after yourselves and be kind to yourself.

hugs

Frances xxx

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Re: Breast pain 18 months after lumpectomy

I had all sorts of shooting pain for the first year but now I'm left with a different kind of pain so I think it just all evolves over time.  As I said in a previous post, the radiographer who did my recent mammogram said she has ladies still having discomfort 10 years on!  If it is playing n your mind call your BCN and see if they can see you to reassure you but I think it is probably just par for the course.  Makes it difficult to judge what's normal and what isn't though doesn't it? xx

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Re: Breast pain 18 months after lumpectomy

I had a lumpectomy in March 2019.  Had a follow up mammogram in August.  It was fine.  Just recently I started to have shooting pain in my breast.  I've been taking Arimedix (think that's how it is spelled) since the surgery.  I am scared to death that something is really wrong.  But now that I've read here that a lot of women have experienced the same thing I'm not so worried.  But if it doesn't stop I will call my surgeon.  

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Re: Breast pain 18 months after lumpectomy

Snap! Had mine a week last Friday and told 2 to 3 weeks for results. Since then I've been nothing but anxious. Xx

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Re: Breast pain 18 months after lumpectomy

Hi Snottydotty

Just to let you know I am experiencing the same as you. It is worrying feeling "lumps and bumps" I agree. I wasn't informed of this either. I had my second mammogram last Friday and am obviously worried about the results. I was told when I had my mammogram last year I would have to wait 10 days but this time I was told up to 3 weeks which I think is ridiculous. I'll be (am!) a nervous wreck!!

xx

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Re: Breast pain 18 months after lumpectomy

Thank you. That's very kind. Hope all goes well for you too x

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Re: Breast pain 18 months after lumpectomy

Hi snottydotty. Sorry you experienced so much pain on your mammogram.  I am due to go for my 2nd on 4th December. Last year someone on this forum advised me to request it to be done manually as it would be more comfortable than the 100 mile a hour flattening that is the norm!!!! It certainly seemed more bearable, although the nurses were a little 'snippy' when I requested it because they have to put a bit of effort into it I guess. I was also advised to take a couple of pain killers half hour before. I will be trying to do.this again this year!! I hope you feel ok now and you get the best result🤞🤞🤞🙌🙌🙌💗💗💗

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Re: Breast pain 18 months after lumpectomy

Only just seen this but I feel exactly the same. I wish someone could have told me at the time that over 18 months on from radiotherapy my breast tissue would be constantly changing still and it's hard to know what's normal and what isn't.  For peace of mind with hindsight I think a mastectomy should have been my preferred option. But my BCN was adamant I didn't need it. I can only assume she knows that a mastectomy can bring worse problems of their own. But I do wish I'd been more fully informed. Been for my second mammogram since treatment and the pain was excruciating. The radiographer said it was common for people to still be having discomfort TEN years later. But the pain I can cope with, it's all the unfamiliar lumps and bumps that cause me great anxiety. 

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Re: Breast pain 18 months after lumpectomy

There is no such thing as a stupid question when you are in pain!  
I started having sharp stabbing pain under my incision for a lumpectomy I had 6 weeks ago.  I am calling my surgeon’s office in the morning.

 

I happen to be an RN with a Bachelor’s degree and many years of experience.

 

You need the peace of mind that is available. Knowing the cause of your discomfort is the first step in finding a way to deal with it.

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Re: Breast pain 18 months after lumpectomy

There is no such thing as a stupid question when you are miserable.  I am 6 weeks after my lumpectomy and today I suddenly felt a sharp stabbing pain under the incision.  Tomorrow I am calling my surgeon.  I hope you will also contact  your doctor’s office for advice.

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Re: Breast pain 18 months after lumpectomy

This is me! Intermittent, no pattern to when pain starts or stops. I seem to be sensitive to any pain. Being a nurse has not made my anxiety less. 

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Re: Breast pain 18 months after lumpectomy

So reassuring to me to read this l too am suffering in silence with alot of pain inthe side of my breast and under armpit l worry about it so much...love to all you ladies.

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Re: Breast pain 18 months after lumpectomy

Welcome to the forum Trixe.I still have sensitive boob 4 years on .

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Re: Breast pain 18 months after lumpectomy

Hi I am new to this forum i all so have breast pain 16 months on was wondering how long it would last looks like we just have to try and get through it the best way we can sending hugs 

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Re: Breast pain 18 months after lumpectomy

Hi all,

 

It will be 3 years on the 12th April since my lumpectomy, I still get pail (not as bad) and get swellings under my arm and down my arm. I have been told this is normal after a lumpectomy and radiotherapy. I have now been diagnosed with 

fibromyalgia, I was blaming the Letrozol (which causes joint pain but apparently there are many women who have had breast cancer can develop fibro. So now i have the joy of joint and muscle pain most days but at least i am still here to moan about it. Sending love, light and healing power to you all. Heart

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Re: Breast pain 18 months after lumpectomy

I think we live in constant fear I had a good cry the other day because my kids reckon I push them away and then told them why would I worry them by saying everyday I wake up in pain and In fear just had my second mammogram had a scare because there was a density that needed further scanning vur I am exhausted waited 3 weeks for results and them the next day in for scan everything was fine but still in so much pain 2 years down the line

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Re: Breast pain 18 months after lumpectomy

This is awful we have been through so much it is nearly 2 years since my surgery and radiotherapy one of my biggest issues were the cording and tightness around my arm chest and breast I did find out that the pectoral muscle which covers the shoulder chest cavity and ribs  and breast apparently can shrink due to radiotherapy which causes the tightness I am now having physio which is helping but sometimes the more my breast feels heavy and swollen the more I find I can't catch my breath the after effects of treatment is horrific 

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Re: Breast pain 18 months after lumpectomy

Gosh frampton 16 weeks?? That's a lot to go through!! But at least we are through it!!💖💖

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Re: Breast pain 18 months after lumpectomy

I had a lumpectomy 5 months ago and then 16 weeks of radiation. My breast is lumpy, hard, looks like leather and I often experience shooting pains which has concerned me, but after reading this post, I realize it is normal. Also, I suffer from fibromyalgia which causes me to hurt all over. There are times that I feel that I can not make it another day. My husband does not understand which makes it even worse. 

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Re: Breast pain 18 months after lumpectomy

It is so reassuring to read these blogs..........it certainly makes it easier knowing so many of you feel the same as me, having had 6 sessions of chemo, lumpectomy, 22 lymph nodes removed and 3 weeks rads !!! i know im only 3months down the line but my goodness its still so painful.....hard lumpy boob, itchy rad burns and stiffness and pain under armpit. Painkillers really dont seem to touch it.......so even though your 18months down the line and still in pain at least it has stopped me worrying about it so much.   i agree with what some of you say about being left to juat cope and are just told to read the leaflets, so hearing from you reaaly has helped...thankyou J x

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Re: Breast pain 18 months after lumpectomy

Omg exactly the same I have had the fear of God in me its also about 18 months since my operation still so many shooting pains sore ribs and pains in my arm your body feels alien it is so difficult to deal with you feel so alone as you say there is so much your not told I was in so much pain this week I didn't think I would survive the night I was absolutely petrified  thank you for sharing not that I want any of you to suffer but sought of reassuring to know I am not on my own

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Re: Breast pain 18 months after lumpectomy

Hi Jackie 

 

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!

 

i hope you are doing really well

 

Jackie x

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Re: Breast pain 18 months after lumpectomy

This is very comforting to read, I’ve been very worried about the different aches and pains in my breast and that area! 


@Alibobs wrote:
Hi Tucky. Just wanted to put your mind at rest and confirm that I am 14 months after lumpectomy and SNB and 11 months since radiotherapy and I still have discomfort on my treated side. I think its internal scarring and the result of radiotherapy. I believe this will lessen in time. I just had my first year all clear last month so I will take a little discomfort in the knowledge that all is ok. Wish you well and if you need to you can always speak to your BCN im sure she will put your mind to rest. 💖💖

 

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Re: Breast pain 18 months after lumpectomy

I also seem to have a weird ache/pain sort of under my boob close to my rib. I also get a weird pain in the side of my boob near my armpit.  It freaks me out. I guess this is normal? It’s 18 months since my lumpectomy, I’m waiting for my annual mammogram, I just want it over with, it’s all such a worry!


@Julie4556 wrote:

Hi, I could of wrote this, i am exactley the same and i too feel like i have just been dumped and no one gives a dam. I am still n a lot of pain in my breast and under my arm, I ake Letrozole and now have Fybromialgia to cope with too. I would recommend to anyone to have a full mastectomy as my sister had one 5 months before i had my lumpectomy and she has not had any troble at all. I am in pain most days and am worse when i go to bed, the pains in my legs, hips, arms etc are getting worse day by day. But guess we are lucky in one way and we were treated in time. xxx Hugs xxx


 

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Re: Breast pain 18 months after lumpectomy

Hi, I could of wrote this, i am exactley the same and i too feel like i have just been dumped and no one gives a dam. I am still n a lot of pain in my breast and under my arm, I ake Letrozole and now have Fybromialgia to cope with too. I would recommend to anyone to have a full mastectomy as my sister had one 5 months before i had my lumpectomy and she has not had any troble at all. I am in pain most days and am worse when i go to bed, the pains in my legs, hips, arms etc are getting worse day by day. But guess we are lucky in one way and we were treated in time. xxx Hugs xxx

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Re: Breast pain 18 months after lumpectomy

Hi, I just wanted to say what a comfort it is reading this, I’ve been silently fretting for ages, I had a lumpectomy 18 months ago, and have exactly the same, pain and aching and soreness around my rib at the bottom of my boob and in the armpit. I thought I was the only one! 


@saralou wrote:
Hi, I had my lumpectomy and radiotherapy two and a half years ago and I still have a very lumpy sore breast and soreness around my ribcage and armpit. If I had known I would be left with these lumps I would've begged for a mastectomy. I've had two clear mammograms but I never fully trust them, as I'd had a clear mammogram just before I found my tumour.
With these hard lumps you are always questioning whether they have changed shape or feel different. I did go back to the breast care centre last year as I was worried but was made to feel like I was wasting their time and being paranoid.
I was given Exemastene to take but no one has ever checked my medication in two years. I hate taking it, it makes me feel nauseous and all my joints hurt. My gp said he didn't know the drug and couldn't help. I feel as if you are completely left on your own. Sorry I sound such a misery. I've not talked about this to anyone since my treatment.

 

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Re: Breast pain 18 months after lumpectomy

Hi, I had my lumpectomy and radiotherapy two and a half years ago and I still have a very lumpy sore breast and soreness around my ribcage and armpit. If I had known I would be left with these lumps I would've begged for a mastectomy. I've had two clear mammograms but I never fully trust them, as I'd had a clear mammogram just before I found my tumour.
With these hard lumps you are always questioning whether they have changed shape or feel different. I did go back to the breast care centre last year as I was worried but was made to feel like I was wasting their time and being paranoid.
I was given Exemastene to take but no one has ever checked my medication in two years. I hate taking it, it makes me feel nauseous and all my joints hurt. My gp said he didn't know the drug and couldn't help. I feel as if you are completely left on your own. Sorry I sound such a misery. I've not talked about this to anyone since my treatment.
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Re: Breast pain 18 months after lumpectomy

I just wanted to say how reassuring this forum is.   Reading the posts has helped me enormously as I have been worrying about pain. Thank you lovely ladies. 

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Re: Breast pain 18 months after lumpectomy

sessions. My left, operated on breast is now much bigger than the right, the nipple is very tender, I have stabbing pains, thickened lumpy areas and oedema. I am conscious of it all the time, bras don't fit and my left arm keeps bumping into the swollen side. I honestly wish I could have had a mastectomy instead.

Exercising with any vigour is impossible as it jolts the breast and is painful. 

Well, moan over, I otherwise feel OK, can taste food again properly and have some hair so no longer need a head covering. Counting my blessings! 

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Re: Breast pain 18 months after lumpectomy

I am 7 months after lumpectomy, lymph node removal and 20 radiotherapy sessio