Hi all. I posted on here last year because I had tenderness in my breast and sternum. I had a mammogram that showed an ill defined density in my right breast but finally a US concluded I have very fibrous tissue. I can’t tell you how petrified I was and how overwhelmed I was by the relief when my US showed there was nothing to worry about. Because of my experience last year I have become very breast aware and in the new year found a lump in my left breast. I saw my GP who referred me to the breast clinic immediately. The consultant examined me and said that he didn’t think it was anything sinister but that I would need mammogram and US. Once I’d had these I was told there were two lumps that would need biopsy. I had the biopsies but these were indeterminate although the feeling is that I have either a fibroadenoma or a phyllodes tumor. Apparently fibroadenoma is unusual for someone my age (44) so they advised that the lumps be removed for definite diagnosis. Had the op on 26th May and am now waiting for results. I have been so calm this time round but have to admit that the wait is now beginning to get to me. I want go get on, but feel I can’t until I know for definite what the lumps are. I have a good friend who is having a dreadful time with bc at the moment and two work colleagues who are also having to climb the mountain that cancer is. I look at them and how brave they are and how they are coping and absolutely refuse to worry unless and until I know there is something go worry about. However that said, I need to know. I’m not sure why I’m posting because I should have the results soon but I think I just need to tell someone how I’m feeling and I know everyone on here will understand that. There you are, just as I’ve finished writing this I am now in tears, perhaps that’s why I needed to write…
hi, just woke up and saw your post. i realy feel for you being awake in the wee small hours with the possibilities going over and over in your head.Even though your growth might or might not be a tumor, even though it is a very small likely hood of it being malignant, the bravest of us will occsionally still visit the bit of our mind that is saying–what if i am one of the rare ones that has a malignancy.
I have a cancerous growth and only very rare cases are malignant,I am having it out in a couple of weeks, we were all laughing last night when my friend pat, I love you because you like to be different and stand out from the crowd, but for just once in your life could you be normal and have a boring old tumor rather than trying to be one in a million. Fortunatly it was a good moment and something we could laugh about. i am just hoping that between now and then I dont crash.Especially if I manage to do it when no one is arround to comfort me.
i looked your tumor up on the internet(i know they tell us not to google) Is it correct that it does not respond to chemotherapy or radiotherapy or hormone therapy?? It seems to me as a lay person it could very well be fibroadenamo, a benign tumor, or in very rare cases something that will spread. They have no way of knowing till they get in there and see.
Its the not knowing that is the worst part. One minute you see your life as just needing to recover from the op, and the next you imagine having to cancel everything whilst they do more surgery or worse.
It must get worse as you approach results day.
I hope you feel better this morning, and having a vent and a good cry helped. This a great forum, everybody is so helpful. no matter how small the query, how long the moan everybody seems to remember what it was like waiting for results and gives you lots of support.
Hi Darkalley,
sending you big hugs, guessing your results won’t be long now. This is the most horrible time and I know exactly how you feel. Don’t forget the helpline if you feel worried.
Have sent you PM
xx
Hi All,
I was diagnosed with malignant phyllodes tumours in 2009 following biopsies that showed benign fibroadenoma. Operation to remove the fibro from which the pathology identified phyllodes. Second operation to obtain clear margins found a second phyllodes and a DCIS loitering with intent! Both removed and all good.
There is very little information about Phyllodes and very little clinical data. However there are a couple of trials trying to get enough samples to conduct them including one in England. Perhaps you could ask your medical team to put you forward for it if yours turns out to be a phyllodes (obviously we’d rather it was just a fibro or indeed, nothing at all!). Info on the Cancer Research site at cancerhelp.org.uk/trials/a-study-looking-at-phyllodes-breast-tumours
Chemo has been found to have no affect on phyllodes so has been discounted as a treatment. However there are differing opinions regarding radiotherapy between the US and the Europe. That said my advice (which I’m very happy with following endless research and investigation too) is that as Phyllodes is a soft tissue sarcoma (not a breast cancer) radiotherapy should be used only when there is no further tissue to remove to obtain clear margins.
We may be unique but we’re not ever alone! I will private message you as I have a number of reference pages and information on my own site and can also introduce to you a number of others too x
Hi Darkalley,
I hope that sharing your thoughts and feeling here and having a little cry has helped a little. The waiting is rotten and I do hope you won’t have to wait much longer, did they give you any idea when the results would be back?
I am keeping my fingers crossed for you that it is a fibro if anything. However, if it does turn out to be cancer you will find a way to deal with it, we all do, we have to! This is a wonderful site for info and support keep using it and please let us now how you get on.
With every good wish to you and sending a cyber hug, Julie
Hi
Thank you all for taking the trouble to read my ramblings, to pm me and post a reply. I have finally received my results and been told that my lumps were benign fibroadeoma. Obviously I am very relieved but feel very fortunate especially when I read other people’s stories on here.
Going through this experience has changed me. I wish I could say that I am more positive and will live every day to the full but instead I feel kind of scared - like I’ve just missed being hit by something by the skin of my teeth. Hopefully this feeling will pass. I am one of the fortunate ones and for that I am eternally grateful because I know that there are thousands of people who would gladly trade places with me.
Anyway, thanks again for help. Much love to you all.
Darkalley x
wonderful news, I am really pleased for you.
Never really thought howni am going to feel after I get my results, assuming they are negative. Obviously it will be a great relief and I have a bootle of bubbly all ready. But this whole experience has changed my life and for the last few weeks have brought it home to me that I am not as immortal as I thought I was. It’s been an very tiring time mentally, thinking about the what ifs.
I think I am still going to feel as if I have been hit with a sledge hammer, and it will take some time for me to get bAck into how thingsnwere before I found the lump.
You are right. It must be a bit like a near miss of being run over. Your heart still pounds and you still relive the accident even though you were not hurt.
I have not cried yet. I bet after I get the results I will let go and finally sob my heart out. And hubby will not understand why.
Hi oldandlumpy, I will be keeping everything crossed that you get good news as I did and that the bottle of bubbly is cracked open. I can really relate to your feelings of not feeling as immortal as you thought. I have felt a little morose about it all but a work colleague of mine who has been through something similar said this “from here on a sore throat is never just a sore throat”. What she means is that having gone through this every little thing makes you think “what if”. To be honest when she said this I could have hugged her. I thought it was just me being irrational but it isn’t. Going through the tests and waiting for results does lead you to question all the beliefs you have ever held and any feelings of knowing it won’t be you are gone. I think to myself now “why not me” because I have very dear and close friends who have suffered and there is no feasible reason why it should have been
them either. I will take my good news for now, I WILL try and enjoy life to the full but I will always remember the people on here and know that there but for the grace of god go I. x
Oh and by the way, within minutes of getting my results the tears flowed fast and furious. So much for me being calm! x
I had a fibroadenoma when I was 33 - you mentioned about it being unusual for someone aged 44 - at what age is it ‘usual’?
I went through all the platitudes at the breast clinic:
“don’t worry, 90% of lumps are a cyst”
“Oh, yours deffo isn’t a cyst”
“Um, err, don’t worry, 90% of those lumps that are not cysts are benign”
etc.
I was feeling the percentages being stacked up against me.
Two weeks after the lumpectomy, I went back to get my results (my horrible ex made me go on my own, I wasn’t aware that he “couldn’t keep it in his trousers” until a year later) and was told it was a fibroadenoma and that I was safe.
It never recurred and the op scar was tidy. They cut around my nipple and worked through that, leaving virtually no scar but I was left with one nip that is slightly winking.
The BC I have now is in the same boob but in a different quadrant, so I don’t think there is any connection at all.
hey…can someone plz tell me if a fibroadenoma is a tumber…as i have been diognosed with it
thankyou
XoXtcXoX
Tumber? Do you mean tumour?
It is a benign growth, a mixture of fibrous tissue (fibro) and fat tissue (adipose=fat hence adenoma).
Benign means that it will not spread to other parts of the body, therefore it is not cancer.
Did the doctor not explain that to you?
Hi all, it’s been some time since I last posted but that was because I thought I had moved on however it now seems I haven’t. I phoned for my results following wle and was told both lumps were fibroadenoma and that I needed to see the consultant. I remember distinctly that the secretary I spoke to seemed so positive so I convinced myself my appointment was for a formal discharge. When I saw my consultant he said that one lump was definitely fibroadenoma but there were benign changes on a previous biopsy site. He said he didn’t want to worry me when I rang for the results because there was nothing really to worry about but he wanted to satisfy himself that there were no hidden lumps so I would need another scan.
I went for my scan today and another lump has been found in the site of the old one. I know fibro’s can come back but don’t know if it would be this quick (6 weeks). I saw the consultant radiologist and he said something that sounded like benign and then proceeded to mumble. I asked the nurse what he had said and she just said that he would write to my consultant.
As it stands at the mo I am no further forward than I was before my wle. I’m fed up with this not knowing. Why does nothing seem straightforward when you walk this path? X
oh no, do you have to start worrying again. to me its wrong to be given partial information over the phone. they eiher should say nothing or give you the whole truth. this partial truth is not acceptable and I thought it was not how things were done nowadays.
Do you have a breast nurse? I would be ringing her every day to see if the report has come through. Say that the consultant did not want to worry you but that the radiologist has. Or you could ask her when the results are likely to come through and fix an appointment soon after that, at least get things rolling.
so sorry you are waiting again, as someone said on another post, cancer is not tidy or straightforward.
I hope you get it sorted soon and that he was right–benign.
I just had a call from the breast clinic and they want me to go for a biopsy on Friday 5th. My new lump is considered to be U3. U1 is normal tissue and U4 and U5 are cancer so I guess this means it is indeterminate but would be grateful for any clarification on this. I know it will be a week or so before I get the results but I will post an update once I have it. Thanks to all of you for your kind words xxx
Hi yes sounds to me from what you’ve said that it maybe on the turn, so try not to worry too much (not easy I know) as if this is the case it is in VERY early stages, but it still could be benign
Do keep us posted
wishing you all the best
Mekala
Hello all, I’m Ellie! i’m 18 and was diagnosed with a malignant Phyllodes tumour on 2nd March this year. I found the lump when i was 16 but took a year to diagnose because i got dismissed as i was so young. So they told me it was a harmless fibroadenoma and i should just leave it. But by the time i got the lumpectomy the tumour was 65mm × 40mm (and very painful). So i was told i needed a mastectomy and radiotherapy. But they decided the radiotherapy would be too risky on my heart with me being so young. So after the mastectomy, they wanted EVEN MORE tissue and skin (didn’t know they could get any more). I had reconstruction on the 13th May with the LD flap. But will be expecting an implant change next year because this one is not working out very well!
Anyway, if anyone has any questions on Phyllodes or Mastectomys or
reconstruction feel free to ask!!
I wish you all the very best xx
Hello, im new to this so please bare with me, im sue, 35 and have been recently diagnosed of having a phyllodes tumor. Im so confused and need a bit of help. I had the tumor removed at the end of august having being told it was a fibroadenoma (but i had noticed that it had got bigger and it had become uncomfortable for me to sleep on my right side so i decided to have it removed).I got the results back a week ago today and the consultant told me it was Phyllodes but it wasnt benign but it wasnt cancer, so does that mean borderline ?. I have to go back in next wednesday to have a further operation. Im confused, is it breast cancer ?, i keep reading bits on the internet dont know if thats the right thing to do. Please can someone help x
That will be borderline malignant (which pretty much means its not cancer but it could turn cancerous if the tumour isn’t removed) … so the reason for doing another operation will just be to take more tissue to reduce the chances of the tumour growing back i’m guessing!
hopefully it’s nothing to worry about, all the best x
Hey Im new here. I’m 18 Indonesian girl and have been diagnosed with phyllodes tumor. Well I had two false diagnosis before because my doctors thought I got fibroadenoma or juvenile fibroadenoma. I’ve been in my therapies for 6 months (I go to 3 therapists including the pearl-accupunture whatsoever) I’ve been taking herbal medications and being a vegan. And yet it worked a bit better, but now I think I get my tumor bigger. It’s so progressive and stressing. Moreover I’m now studying in Germany and I skip all therapies that I only rely on my medications (phytonutrients, multivitamins, minerals supplement and wheatgrass protein powder in progress) I was about to take mastectomy, reconstruction, and radiation afterwards but I canceled it since I know a lot of women in my case failed it and had to take other surgeries, cemotherapy, even ended up passing away. I’ve read a lot of health articles and Im very scared and confused about what I exactly have to do. Please kindly give me some suggestions. And for those experiencing the same issue with me, would yoh please tell me how your mastectomy going? Did you also have to cut off your nipple? And how is the reconstruction going? Thank you