Round 3

FranfromFL

This is my first posting on this website.  I sure never wanted to qualify to be on a page for "Second or Third Breast Cancer" but here I am and I am ready for a whining pity party.

In 2002, I had a lumpectomy on my left breast followed by radiation therapy.  Less than a year later, I was diagnosed with cancer in my right breast and they did a mastectomy followed by chemo.  For the past 11 years, I have gone for my required mammos and everything has been o.k.  I was beginning to think I was out of the woods, but nope.  Last fall, I felt like something was going on with my left breast.  My GP sent me for a mammo and an ultrasound and they said everything looked o.k.  That really didn't explain what was going on with my breast but I figured since they told me everything was o.k. it must be.  Six months later my breast was still bothering me.  I was sent for another mammo and ultrasound.  Once again the radiologist said everything looked o.k.  I finally said, LOOK SOMETHING IS GOING ON and I explained my symptoms.  She said, o.k. I'll recommend an MRI.  The MRI indeed showed something was going on so they sent me for a biopsy.  Turns out is was Invasive Lobular Carcinoma (Maybe I should post on that page too.)  Anyway ladies, did you know that you can have a totally normal mammo and ultrasound and STILL have cancer??  Turns out ILC is very difficult to detect on a mammo or ultrasound.  I sure didn't know that but you would think someone in the medical community would have known and would have sent me for a MRI last fall since I already had a history of having breast cancer twice already!

A week ago, I had a mastectomy.  I felt great for 3 days and then had a horrible reaction to the pain meds and threw up 8 times in one day and two the next.  Finally felt better but then my drainage tube started to leak.  It still really needed to be in there but it wasn't working because it wasn't holding a vacuum so they removed it today.  Now if I get fluid build up I will have to have it removed with a needle.  That sounds like fun.....  I saw the oncologist today and he said I have Stage 2a ILC.  It has not spread to my lymph glands.  They also did a PET scan and said it hasn't spread elsewhere.  Considering it took them since last fall to find it, I think that is a miracle.  I am waiting for further tests to see if I will need chemo or meds.  I told my husband that I feel like I have aged 5 years in the past week.  

So that is my tale of woe.  I am feeling pretty bummed right now and hope I cheer up soon.  I hope whoever reads this will be more forceful than I was.  If you feel something is wrong with your breast, bug them until they figure it out!           

 

Nan54

Ugh, I'm so sorry that you have to find yourself here. And I am angry for you that it took so long (and so much effort from you) to get this last diagnosis. But, it sounds like it was still caught early and that you have a very good chance of beating it again. Hopefully you have a medical team that you are comfortable with and trust. I will be thinking of you and praying for a speedy recovery and only good news going forward...

FranfromFL

Thank you so much.

FranfromFL

Oh, I forgot.  This is actually Round 4.  Not of breast cancer but of cancer because I had malignant melanoma on my leg last fall too.  That was caught early and is o.k. now too.  I guess I am a tough old broad.

farmerlucy

Hi Fran - Welcome to BCO - 4 times - wow! You are so right about being persistent. We ALL must be our own best advocates. I'm glad the nodes were clear. I hope the rest of the testing comes out positive. I wish you quick and uneventful healing! 

Morwenna

Hi Fran,

Welcome to the boards. Your story truly sucks, so be as whiney as you like! 

Hope you don't mind if I ask a quick question .... : I was wondering what your symptoms were, that made you feel there was something wrong, even though imaging showed nada?

I'm so concerned about my remaining breast. It feels lumpy to me, but imaging last summer was just "fibrocystic changes". Then I had my yearly mammogram last month, and there is some irregularity. So the advice was to check again in 6 months. 

Hah. I'm booked provisionally for a prophylactic Mx Dec 16, and bilateral reconstruction. So in 6 months this sucker is coming off, willy-nilly! I'm still willing to bet they find something going on!

FranfromFL

Morwenna - At first my nipple felt oversensitive and kind of itchy.  Then it felt like there was a thickening under the nipple.  Then the area where I had my lumpectomy 12 years ago seemed to be sinking in.  Then there was a thickening above the nipple and my nipple was turning inward. I have ILC.  If you research it on here, it says ILC is more difficult to see on a mammo.  They NEVER saw it at all on my mammos and my tumor was over 2 centimeters.  They list a whole bunch of symptoms on the Signs and Symptoms page for ILC, many of which I had.    I think we know our own bodies the best and if we feel something is wrong, we are probably correct.  I hope I am wrong and they won't find anything for you.  You are better safe than sorry so I can see why you are going to get it removed!     

MomtoIrishQuads

Fran - you have been through the wringer!  I hope that things improve in your next phase of treatment.

I can second your recommendation to be your own advocate.  I had DCIS 3 years ago - fairly easy treatments (lumpectomy, followed by partial mastecomy of both breasts) and radiation.

Someone (can't remember whom) told me to INSIST on MRIs - so I did.  I didn't get any grief - but a year ago we moved from CA to SC and the new doc questioned why I would want an MRI - they said that DCIS is better caught with mammo.  I said - well - I want an MRI.  They did it and found Stage 1 (1.9 cm) on the other breast.  They couldn't even find it with an ultrasound when they tried to do a biopsy.  My only potential symptom was that I was extremely fatigued (may or may not be connected).  I had a lumpectomy and am heading to radiation after one round of chemo (I didn't do well with chemo).

It perplexes me that they don't pull out all the diagnostic stops with women that have a past history of BC.  It's just plain dangerous (IMO).  

Heck - I might start asking for MRI's every 6 months.  I haven't had a PET scan yet - wonder if I should ask about that?

Thanks for sharing - we need to alert women!

Deb

bevin

Fran- thank goodness you were strong enough to be your own patient advocate and push further for testing when you felt something was just not right. It really does tell us we know our bodies well. I'm sorry you are going through this yet again and pray for a swift recovery.

Anonymous

Oh Fran, 4 times!  You whine all you want. No judging here.  We ALL whine.  Then we find a way to get on with it.  Some days are harder than others. Best to you as you move forward.

dancingdiva

My story, US just showed a 3cm lesion not suspicious. 6 month follow up. 4 months later had another US because I was having pain. No change in lesion. Wanted biopsy...at this pt my nipple was inverting. dx with IDC. BUT I had denseness on upper part of breast that did not show up in US, told surgeon who removed it during surgery. ALL CANCER and it didn't show AT ALL in US. I have very dense breasts and should have been ordered an MRI for screening. This should be told to all women with dense breast as US could show nothing.