As some of you know, I was diagnosed with multi-focal invasive ductal carcinoma last November and have since had WLE, chemo and have now started on radiotherapy. On Friday, after nine out of 30 treatments I got terrible breast pain, and the following day my breast was red, hot, swollen and hard. I have been back to the radiotherapy department today and saw the doctor. Was told that my symptoms are definitely NOT a reaction to the radiotherapy. Was sent off for an ultrasound to see if it was an abscess. This showed a collection of fluid which was drained, but did not look like pus. Have been given antibiotics to take.
The bottom line is, if it is an infection that will be a good thing, but I now have it in my mind that it could be inflammatoy breast cancer. I think this is diagnosed by skin biopsy. Not looking for any answers here, just wanted to get it all out I suppose! I was pretty tearful at the hospital this afternoon as was feeling so ill - and I’m a long way from home as some of you know and hubby abroad at the moment). Just after tea and sympathy! Guess I’ll know more over the next few days - but you know how our minds run wild! Sarah.
AWWWW poor you ((((((Sarah)))))
Hope it is an infection - I know that sounds bad but an infection is better than inflammatory breast cancer.
Have they stopped your radiotherapy pending their investigations?
Hi Sarah
I am so sorry to hear of your problems and the fact you are alone will make them feel a million times worse. Why do you think you may have IBC? Did they give you any reason t o think this at original diagnosis? It is far morel likely to be an infection or serious inflammation caused by surgery, chemo and radiotherapy. They all cause severe scarring of the tissues, including the lymphatic vessels and lymph drainage is far more difficult afterwards. This will cause a backup of lymph fluid which will make your breast red,sore etc., so hopefully is this. This is one of the biggest problems during and after treatment for cancer. We automatically jump to the worse conclusion rather than the most logical one.
Hope you feel better soon
Cathy
x
Hi Cathy and Lilacblushes - Thank you so much for your quick and very sensible replies! Radiotherapy going on regardless as they have said it is unconnected, and of course I need it! You are right in all you say Lilacblushes, and I will hold tight to your words while I await the outcome of tests. The thought of IBC is only because the skin changes, redness, heat, fibrosis and pain completely fit in with the descriptions of it, but as you say, an infection is far more likely. Thanks both of you. Sarah x
Hello Sarah,
Firstly let me say that I have IBC.
Since we are far more knowledgeable about the signs to look out for with this awful type of BC I understand how easy it is to worry at the first sign of inflamation.
It’s good that you have been started on a course of anitbiotics and hopefully you will begin to see some improvement over the next few days. The fact that you U/S showed fluid to be drained sounds as though you do indeed have an infection following on from your recent surgery. I hope you start to feel better very soon and good luck with the rest of your rads 
Love
Jackie x
Thanks Jackie. I am so sorry to read that you have IBC, what stage are you at with your treatment? From what I have read I do understand that you are having to deal with even more than a lot of the rest of us. My surgery was very straightforward and no problems afterwards - it was back in November. This may well just be “one of those things”, but I guess I will know more over the next few days. Thank you so much for posting, when I am sure you have more than enough on your plate. Love Sarah x
Hello Sarah,
Hope you’re feeling a little better today.
I’m doing ok thank you.
I was dx in 2005, had all the usual, chemo, surgery then rads.
Unfortunately had a recurrence while having the rads, quite common with IBC!
Had a WLE with clear margins so that sorted that out.
Went on to develop skin mets, another common factor of this type of bc it’s so stubborn!
Hormonals kept these under control for a good while but due to recent progression I am back on chemo, tablets this time, so much easier ,and I am able to carry on working.
I was referred to the Marsden last November for second opinion and am still under the care of my local onc too.
My chemo is a trial, capcetibine and lapatinib, had very good results in USA trials with IBC, so I’m very hopeful!!
I am on the second cycle and we’re quite excited as there was some immediate improvement.
Let me know how you get on with the AB’s,
Love
Jackie xx
PS Hope that wasn’t too much info, lol
Hi Jackie - Thanks so much for writing back. Gosh, you have certainly been through the mill. At least you know that with the Marsden whatever treatment you are getting is really at the forefront of the most effective ways of tackling IBC. So pleased for you that you are getting an improvement. Long may this continue, and please keep letting us know how you are.
I seem to be responding to the antibiotics, will see the doctor again tomorrow and get the path results, but a lot more comfortable than a few days ago. Thanks for your support and good luck for your treatment. Love Sarah xx
So pleased the antibiotics seem to be doing the job Sarah.
Take good care now,
Love
Jackie xxx
Hi Sarah
I am also very relieved to hear the antibiotics are working.
Cathy
x
Just a little update! Saw the Registrar at Radiotherapy today and showed her the very hard clearly defined lump that is beneath my scar line, and has been ever since they drained whatever it was (nothing cultured)!! Anyway, she said it was very “unusual” and she is arranging for me to see the Consultant tomorrow and is also arranging a biopsy. I am pretty sure it will be some kind of fibrosis, but of course this is unsettling as she is excluding malignancy. When I had my WLE it showed up three tumours, and two satellite bits, and DCIS and the surgeon said afterwards he was concerned at the amount of cancer that there was (only one tumour showed up on ultrasound/mammogram). Oh well, will just have to wait and see the outcome now, but at least if I am told it is nothing to worry about then I can ignore it! Will let you know!
Hi Jackie - Thanks for asking! Had ultra sound on Friday and saw the consultant. Ultra sound apparently shows another “collection” under the scar area, but not suspicious looking. Then saw the consultant who said probably fibrosis or a haematoma, but although she had never come across a recurrence at this stage in treatment, she would do a biopsy to exclude just in case. But first she phoned my surgeon who said he was not concerned, expecially as I had an MRI after the WLE. But he wants to “have a look at me”. So I have an appointment to see him on Monday, and am wondering whether he will do a biopsy/FNA or just look!! When I left the radiotherapy department on Friday not having had the biopsy there that had been planned the girls were all saying “go home and crack open the champagne”, very sweet of them, but they don’t quite get it!! Meanwhile I still have painful, hard lump with skin tethering. OH going abroad for 3 weeks on Monday.
I’m sure it’s all fine … Will write again after Monday. Sarah xx
…just back from seeing the surgeon. Said that the skin tethering and lump were “almost certainly” result of scar tissue. As to a biopsy, not keen on me having more needles stuck into me as each time is likely to worsen the cosmetic result. So I said “so you are confident it is not a malignancy” “well the only way to say that would be to have a biopsy, which you can if you want”. And so the conversation went on!! Have decided to go with his advice/experience and not do anything now, 1st annual review and imaging will take place in November. Did say to him that it was just a bit unsettling when on Friday was told by three different doctors that I should have had a biopsy, and now being told today that he thought it was best not to. Wondering how any of you think you might react - or if you hae had any similar experiences. At the moment I think I will just accept that I have a lump in my breast that is highly likely to be of no significance, but if I find myself worrying about it too much I will go back. What a carry on!! Sarah x
Hi Sarah,
Never straight forward is it?!
I think I would follow my oncs decision too, need that trust at the end of the day.
However, I also think you are very wise to keep any eye on things, and to go straight back if the lump causes you any further worry or concern.
Take good care,
Love
Jackie xx
Hi Sarah,
Sorry, I too missed your message - goodness! it was weeks ago. Really sorry to hear that your symptoms are dragging on, though I think I would have gone for a needle biopsy - they don’t do much cosmetic damage, do they? And anyway, I have a ruddy great ‘peace-sign’ of a scar under my arm and stretching out across my breast so a few extra marks are neither here nor there.
I haven’t been to this site as much as earlier - this third Tax has been taxing (sorry) and I suppose I’ve been trying to take my mind off the reason, rather than embracing it. It’s all got a bit boring - and I hate boring. My sister has been to stay - which was wonderful but actually somewhat exhausting. She’s so energetic and kept insisting that the best thing for me would be to take nice long walks in the sunshine and then pop out for a jolly little lunch somewhere and put my feet up in the afternoon while she made a lot of noise with the vacuum cleaner. I got a little short towards the end, and simply ran for the sofa after she left, where I have remained ever since. I’m hoping the Fec treatments won’t be quite as tough as the the Tax - but I’m a bit concerned about the nausea. That would be a bit much!
Anyway, best of luck with yours - has it meant a delay in the rads? Or are they marching on towards the finishing line? I’ve forgotten - if I knew - what kind of cancer yours is, and what kind of treatment will follow. Mine is Her2-, oestrogen & progest. +++ so I suppose Tamoxifen (?), but I’m going to have all the reproductive bits surgically removed first. A later issue and not worth thinking about now.
Lots of love, & keep your daughter on the ball,
M-L
Thanks to both of you for answering. Good to hear from you again M-L - I was concerned you had been a bit quiet of late! Did pm you after another message some time ago, not sure if you found it! You remind me a bit of what I was like - really up for what was ahead when I was first diagnosed, and had surgery, but then found I got a bit ground down as the chemotherapy went on and just feeling very bored with the whole thing!! Sorry it is a difficult time for you, and I do hope that the FEC won’t be too hard - please let us know. I had multi-focal (three tumours) invasive ductal carcinoma (Grade III) with some DCIS. Had WLE, then 3 FEC, 3 Taxotere and now had 22 out of 30 radiotherapy treatments - hormone treatment ahead as O Pos. Yes, the radiotherapy bit has carried on regardless of the infection/lump etc! Glad you had your sister to stay, diverting but also exhausting I am sure! Please do keep in touch. I know what you mean about not coming on this site to take your mind off it a bit. I think it is a fabulous site and has been such a wonderful support, but sometimes I think I really am spending too much of my time thinking about breast cancer and really should extend my horizons a bit more. Then again I’m still in the middle of treatment and uncertainty so perhaps just have to live with the fact that BC is on my mind a lot of the day - as are all the other people who are going through the same thing. Lots of love Sarah xx
Hi Sarah
Just read your comment about the trip to the surgeon. Its a difficult decision, isnt it? What is your gut instinct on this? Has he been right so far in terms of your original diagnosis? I have followed your posts with interest and and personally I would take the surgeon’s word for it. I know they make mistakes but this guy seems to be sticking his neck out. Someone with less confidence and experience would insist you had a biopsy. I am sure many doctors prescribe unecessary investigative procedures to cover themselves. But if you are a natural born worrier, then maybe the biopsy would give you peace of mind.
Good luck in your decision
Cathy
x
HI Cathy - Thanks for your comments, I am tending to go along with the surgeon’s advice, and do nothing. Not a natural worrier, but a breast cancer diagnosis kind of gives you another perspective! I think your words about his experience and confidence are very wise. The original diagnosis, on the basis of ultra sound/core biopsy only showed up one tumour - whereas after the WLE we knew there were three, and some satellite bits and DCIS and lympho vascular invasion. But that wasn’t the surgeons’ fault!! Tempted to let everything rest at the moment and occupy my mind with other things and see how that goes! Hope all is going well with you. Sarah x
Hi SSS!!!
I can’t understand how I have missed this thread! How appalling of me - I never look in this section …I try and stick to “Chemo” and the things I’ve ticked off so far …otherwise I get a bit overcome with all the info.
I am sooo sorry to read everything you’ve been through - what an emotional roller coaster this is isn’t it … it’s like a blooming Hitchcock film - one minute we’re all happily sitting on the sofa wondering about whether to have a chocolate (or in my case a pringle) and the next we’re terrified on the edge of the seat …
I have to say I agree with ML … not wanting to worry you. (By the way lovely to hear from you and your news ML. I now have almost-daily sitr-fired vegetables thanks to you.)The reason for that is that in my own case I had a 2-3cm lump that in January 07 they said was fine and then by October it was a nearly 5 cm malignant lump - so it was clearly not right before! Having said this - this was based on purely a mamogram and you have had more than that. But they made the judgement that only a mamogram was necessary. I would therefore always recommend anyone with a lump to have a biopsy.
If it was me I’d find out two things : the risk of infection to the breast due to biopsy and also the likelyhood of disfigurement and how bad would it be? Not being funny but when they did my biopsy before my surgery the surgeon couldn’t even see the scar a week later! He was fishing for it for ages … either that or he liked my boob!!! What a thing to write !!!
Don’t want to worry you and it’s your decision but if they get it wrong it’s only a mistake for them - whereas for you it’s far more serious than that! … I would have a rethink and find out the answer to the 2 questions and think about having it done.
I have to say I will never ever trust doctors completely … simply because they are only human … and not many people score 100% every day of their working lives - whatever field they are in. I’m not trying to worry anyone and I know that they are doing their best - but if I had had 3 saying “do it” and then one saying “don’t” …I’d do it unless there was a very good reason not to … and like ML says you need a better reason than “disfigurement” as the longer I am taking to write this post the more I’m thinking that is simply WRONG ??? I think he’s saying that to put you off as in his professional opinion you don’t need it. If that it the case then I think that is taking a HUGE liberty as you are an inteligent adult not a child. He is pushing a button! Ask another onc whether someone in your condition having a biopsy would have any disfigurement … If I am wrong then I apologise profusely and lick his boots in advance.
You must be feeling a bit of an anti-climax now - having been through all that and now been told not to worry - very confusing. Especially with your OH not here! Not to mention some of us attempting to undermine your decision. Sorry about that but as you know I have to say what I really feel - what’s the point otherwise?
Anway - good luck with whatever you decide and hope that the radiotherapy is over soon. I’m hoping that I will get Tax 3 next Tuesday and then it will only be one more after that …
Let us know how you are
lots of love
FizBix xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx - xtra ones this time!