Can you please give me some advice

MissBenster

Hi girls, I wanted to seek your advice here in this forum because I have been reading lot of threads here and I have to say that many of the symptoms you talk about I can see in my self. First thing first I live in Iceland so my english is propably not to good but I hope you can all understand me.

About a month ago I found a lump in my breast in the upper outer cornor, first I found a thickening under my arm it's like I'm swollen there but I can not find a typical lump there but after I discovered this I started doing a BS'E and found a lump that is not like a pea or round like I think they are always taking about.

The lump is a little bit movible and it feels rubbery and it has irregular lines also it is quite big, I went to my GP straight away and he felt it too and he did send me for a mammpgraphy and US at the cancer screening station, they couldn't see anything out of the ordanary so I asked the radiologist what it was he said it is propably just big lobular??

So I went home and have to tell you that I am not convinced because since I went the lump is still there and I have been doing a lot more BS'E and can now see a dimping like the lump is pulling my skin when I raise my hand up and also my breast has changed in size, It seems like the right breast is smaller and more fuller then the left wich has no lumps in it also there is some kind of thickening above the lump but I don't know if it is related.

Recently I have lost 20 pounds with out doing anything different and I always feel like let down and have little energy these days... 

The thing is I went again to the GP but mine was not in so I had to go to another and she just looked at me like I was strange because I was trying to tell her that I was not happy with this outcome and wanted more test to be done...she was going to look in to it and call me yesterday and she didn't.

I am just real scared also because 2-3 months ago I started to exspirence a trouble with my right arm, It swells up for no reason and when I have to do the dishes for example it gets real bad and swells up so the arm feels heavy and the skin tight but I don't know if this is realated.

Also I am just 35 and maby that's why they don't take this seriously but I have read on the internet that this can happen to women my age though it is not as common.

The thing is all the things I have read about BS'E tell me that my breasts should feel the same and they do not and I have a lot of symptoms so I am a little bit scared..

I wanted to ask you do you think I am right to worrie about this and I wanted to ask is any of you in similar age as me and has ILC? 

I hope you are all on your way to recovery my friends...

GramE

HI.  If I were you, I would seek an appointment with a Breast specialist.   If nothing else, a core needly biopsy could or SHOULD be done to rule out any problem.   Yes, it is invasive, but this is the ONLY way to tell what is is.   There are many, many who are as young as you and younger.  I am an oldie - 62 when diagnosed, but had lumps from the time I was 30 years old.   Each and every one of them was taken seriously by my doctors and some "only" were fluid filled and a needle inserted to remove the fluid took care of them.  Other ones were biopsied and fortunately, only this last one turned out to be cancer.  

You know your body and you are the one who knows something has changed.   Good luck, Nancy 

susaloh

Can´t help myself but have to say: The way you are beeing treated by your doctors is criminal! All the symptoms you describe sound so so so suspicious and they don´t even want to look into it! As if they never heard of the possibility of lobular BC. I always thought the story of my diagnosis was quite something but your situation is outrageous! If I were you, I would go into the Breast Cancer station and make a scene and yell at them until they treat you properly!

MissBenster

Thank you so much for your response, the thing is I did ask for a needle biopsy but my GP told me that they couldn't do it because they didn't see anything on the mammo or US and she sad that they wouldn't do it with a normal breast tissue?

So I asked how she could be so sure that my breast tissue was healthy than she told me that she was going to talk to the cancer station and get back to me...

Susaloh I have to admit that I have been thinking that maby this is the only way they will listen to me.. but I will do something about this on monday because I know that I am the only one who takes care of me and my health, my husband is so angry that they treat me this way and he was thinking of talking to them too on monday and demand that they rool cancer out.

golfer779

MissBenster .... as a lobular gal myself, your description sounds rather familiar to what I had in 2007.  I personally would request an MRI as those pesky lobular cancers don't like to show up in a mamo/US quite as easily as a ductal type cancer.  Bottom line is that you need to feel confident that you've been cared for and properly diagnosed.  Continue being proactive ... only you can really say that something just isn't right here !!!!

Continued strength.

hlya

Based on what I read from this board some ladies' ILC even didn't show up on MRI.  Please insist on core needle biopsy to check.  Hope it's nothing!

MissBenster

golfer779 and hlya thank you so much for your response , I am going to mention MRI to my GP on monday that is to say if she calls but if she doesn't ..I am thinking of going to the cancer screening station again and insist that they check this out with core needle biopsy like hlya mentiond...the thing is as more as I read here the more I identify with you...

I took a shower to night and did jump in front of the mirror with my hand behind my neck and the breast's don't even move in the same way and they look so diffirent so I asked my husband to take a look at it and he was surprised to see how much different there is...and I admit that I'm so scared you know .. especially when I can't trust the doctors....

hlya

Hi, Benster,

I can fully understand your feeling, but no need to be too scared at this moment,  it's probably nothing,  but you have to be comfortable with the result.   You care about yourself most.  Just tell them the ILC stories you read from here.

susaloh

Hi Miss Benster,

I hope you are okay - a few days have passed - I hope you have been successful in terms of getting doctors to examine you properly?  Any results yet? Wanted to tell you two things:

Is a core needle biopsy that type of biopsy, where they kind of "shoot" you in the breast with a thicker needle? The other type is a fine needle biopsy and that, apparently, is not very effective with ILC. Even with the other type - I had two of those, they apparently didn´t catch lots of cancer material in both cases, it was mentioned in the report, that there were lots of other cells in between. The ILC-cells, as they grow in files, are hard to get with a needle. Would be gratefull if somebody could fill me in on the right terms for these types of biopsies. 

Another bit of knowledge - maybe you can get your doctors to physically examine you while you´re lying down  - apparently,  ILC is easier to feel /see in that position.

Hope to hear from you soon!

Susaloh

MissBenster

Dear Susaloh and SherriG thank you so much for your answer and kind thoughts. I am now waiting for my doctor's appointment at the cancer screening station (again). it is not until monday so I'm still waiting and I have to tell you it's so hard this waiting game as I'm sure you know well.

 As I haven't met the dr. I'm not sure of the different between the core needle biopsy  and FNA..SherriG thank you for sharing that with me, you know after reading all these threads here in this forum I have to say that I am going to ask my dr. to let me have a Breast MRI instead of taking mammogram photos again..I'm hoping he will agree..I was thinking of asking him to look at the thread here were you are all talking about how your cancer was found...then he can see that it is the best way of testing for this kind of cancer....

It helps a lot to hear from you and what your exspirience is.

Gitane

Dear MissBenster,  I hope the people at your cancer station will take your concerns seriously.  I hear you saying that your GP cannot do a FNA (find needle aspiration that gives a small sample)  or a Core Needle Biopsy (a little bit larger needle biopsy that punches out small cylinders of cells, usually at least 3 samples are taken) because they don't know exactly where the cyst/tumor or whatever is in your breast or under arm.  If it is the case that the mammogram and ultrasound are not showing your enlarged areas, a MRI may be just what you need.  An MRI guided biopsy may be possible, to locate the areas to sample.  If an MRI shows nothing it is still possible for a surgeon to biopsy the areas of concern. An experienced breast surgeon would be best.  

MissBenster

Hi girls, wanted to let you know that I went yesterday to my appt..at the cancer screening staition and I have to say again I'm not happy because I told the doctor that I was worried that this could be ILC and I did try to show her my symptoms but because I was sent there from my GP she didn't think there was a need and just looked at the breast and wanted to do the US straight away, so I told her when she was doing that...that I was worried that this could be ILC and if so it wouldn't show up on the US.

She then told me that mammogram missed the ilc much more then US and that US was 97% accurate..wich I knew from reading here wasn't right but she didn't listen to me, then she told me that this was a cyst and I asked her to aspirate it....wich she did, she put the needle in once and I didn't see what came out if anything. Went on my way home after that and thought I was home free but when I came home I could see that my symptoms were still the same?

Everything is the same and I'm pretty sure that the symptoms are getting worse because I can feel more thickening and when I put my hand under my breast and touch it I can feel something as hard as the point of  an pencil through my nipple....is there something in our breast that is suppose to feel that way??

I wanted to ask you about the thickening that you talk about is it like firm and flat?

It's like the normal breast tissue which normally feels soft is gettig firmer and I can't feel my normal breast tissue..

I'm not sure what to do, I don't want to be like some crazy lady in the doctors eyes but I can't just leave this alone...

I really did think that the Dr would take my symptoms seriously because every site that I read about this mention these symptoms as a sign of cancer but I feel like a fool when that act this way and start to second guess my self. 

So I really want to know how your thickening felt...because my gut tells me that what I can feel is the same or similar..

 Thank you so so much for reading this and helping me out.

nash

MissB, scroll down a little on the ILC page of topics, and there's a thread called "How many of you actually had a palpable lump?" that I started last year that has a lot of discussion of how everyone's ILC felt upon self-exam. Or you can get to the link here (sorry I can't post live links with my browser): http://community.breastcancer.org/forum/71/topic/699650?page=1

You really need to have a breast MRI done for peace of mind--keep pushing until you find a doc who will order one for you.

MissBenster

Hi Nash thank you for your answer, I have been reading that thread and I'm not sure if what I am feeling is the same because many are having hard time to describe these thickening.

Yes I know I have to find some doctor that's willing to listen but I have to admit that I feel kind of foolish because these two doctors that I met thing that mammo and US are the end and beginning of everything you know, I know that what I'm feeling isn't normal and my breast is changing a lot and I wished that the doctors would listen to that instead of talking to me like I'm strange because I want them to rule out cancer, my gut is telling me that this kind of changes isn't normal I mean I would think that I know my breasts better then they think they do.

I'm sorry for all this venting but it's so hard to be your own advocate when the doctors make you feel like your crazy or something, thanks again for all your support it's greatly appreciated. 

nash

I totally understand about the frustration with the docs. Keep pushing the docs until you get one to listen to you, and keep us posted. Fingers crossed for good results for you.

MissBenster

Hi girls, I just wanted to let you know that I'm still here and have continued to read all the threads which has helped a lot.

You all have been so nice to me that I thought that letting you know how everything is going for me was the right thing to do and also it does help me a lot talking to you.

I have a appt. with a BS on the 17th november after 10 days...it's such a hard time to wait like this because my breast keeps getting worse and the thickening gets bigger now I don't even have to raise my hand up to see the dimples and the shape of my breast has changed a little bit I can see when looking from the site a little bulge where the thickening begins.....and two days ago I found a big lump deep in my right armpit, Think it is a lymph node, it's round and hard and about 2 cm but I'm not sure because it's so deep in...but that lymph node is probably to blame for my right hand swelling up all the time....

I have to tell you that I'm getting more and more scared because it seems that my symptoms just keeps getting worse...

I feel so tired all the time and half of the time it feels like I have the flu or something...don't know if that's related to all of this but there sure is something going on with my body....

I have high hopes for this doctor I'm going to meet....I have talked to him via e mail and he understands my concerns very well and told me that I was right to be worried about these symptoms...so maby finally I'm meeting a doctor that is willing to listen to me as a patient.

One strange thing I have to mention that is few days ago when looking in the mirror at my breasts (of course) I saw a small perfectly round ring it's just next to the areola on my right breast, I think it's similar to dime in size...what is strange is that this is not like a spot ...you know which is all brown but only the outline of the this ring is brown...don't have a clue what this is and have never had anything like this before..

I hope you can understand me, It's a little bit hard describe things in another language than my own.

I really hope you don't mind me letting you know and talking to you here:) 

hrf

MissBenster, don't stop until you get answers and a diagnosis based on fact. ILC is sneaky and often doesn't show on mammo or US. You need mri. You are right to persist. Best wishes.

MissBenster

I wont... I will keep on until I get an breast MRI as I know that seems to be the only reliable diagnosis apart from biopsy...thank you and best wishes to you too:)

MissBenster

Hi SherriG I know and that's the reason why I'm so worried I know that Mammo and US aren't so good with the ILC but I wanted to tell you and the girls that I just called the doctor at the screening station which looked at me before and told her about the big hard lymph node in my armpit and she wants to see me straight away so I'm going after an hour to see her and she is going to take a look at it but I'm a little bit afraid because she talked about doing an ultrasound exam on it and I don't know if that is enough I mean does the US tell her if the node is cancerous or not?

I'm going to ask her to biopsy it for me because after everything I don't trust the US and also I'm going to ask for the MRI. 

The only trouble is I'm such a shy person and after all this bad treatment from doctors I'm a little bit afraid to talk to them...because I can't take my husband with me in to the doctors because it's only for women....