Waiting and frustrated! (Apologies for the length)

red_ali

I found out on the 21st of March that I needed to have a mammogram, as a CT scan of my chest showed a 18mm mass on my left breast. (CT was unrelated to breast, but was to check my lymphnodes, as throat ones have been "shotty" for nearly two years.)  I was a bit shocked, as I certainly couldn't feel anything that large on my breast.

I was seen on the 25th at our local breast clinic and had the mammogram and US. Both showed a mass that they measured as 19mm and I was told that I would need to have a biopsy, which was scheduled for the next morning.  The radiologist did the US guided core-biopsy, but because I am very large breasted and the depth of the mass, he was unable to get to the depth he needed. He used the biopsy needle to get closer to the mass, but said he still wasn't confident that he had gotten enough.  Unfortunately, I started to bleed and he stopped at that point.

Long story short, I had a call back on Wednesday telling me that I was being referred to a breast surgeon due to PASH and ALH. (I have subsequently found out that I also have focal columnar cell changes as well.) I called the cancer center and a fantastic nurse was able to discuss my situation and explain to me the ALH and PASH and why the mass would need to come out. I was told that I could be seen either on the North Shore (where I live) or in Boston (where I work).  I chose Boston, as I have been a patient at Mass General before due to heart failure last year... My thoughts were if I need to have surgery, better to have it near my cardiologist... and truthfully that if I it was important enough for them to tell me right away that I needed it out, it should come out sooner, which was more likely to happen where they have LOADS more doctors. BOY WAS I WRONG!?!?!

((I have a history of breast cancer on both my maternal and paternal sides, but also about 5 other kinds of cancer, so I was understandable concerned.  On top of it all, my mother died from complications resulting from a benign tumor... so you can only imagine my fear when I read the description of PASH, which sound exactly like the description of her desmoid tumor! To say that I stressed was an understatement... ))

So I received a call that very afternoon from the BS... I could get in to see her April 12th (today) and to have all of my slides and images sent to her office. Basically the slides finally arrived Wednesday and the images? Well, I had to go get them myself, as the courier lost 2 sets already. The BS didn't get to look at the images at all (which I thought was odd, because I could actually view them from home on my computer...) and told me the exact same thing that the nurse did two weeks ago. I was told I would need a wire guided excisional biopsy and that she would take 1cm around the mass and that given the amount of cancer in my family, I should really speak with one of their genetic counselors about testing. I was given the release form to sign and given a card to the scheduling office. No explanation of the process or the wait time or anything...

So I called her scheduler at her office... aside from the fact that she was HORRIBLY rude about me calling her ("Didn't you hear them say that I would be calling you?"), she brushed me aside and it wasn't until I explained that I had no clue about the process that she very curtly informed me that it would be the week of the 29th at the earliest and that it possibly may stretch into May...?!?!?!?!?!? AND that she'd take a number to call me back, but that it wasn't likely that she'd speak to me before Tuesday. 

Let me first start by saying that I completely understand that my case isn't severe and I know that there are people that are far higher up on the priority list.  What really burns me is that nearly 3 weeks ago it was an important issue that needed attention right away and that the radiologist was recommending I speak with someone right away to get it removed... and here I sit being told it will be another 3 weeks at the earliest before they are able to schedule me for anything... oh and did I mention that she is going away on vacation, so it is likely that another doctor may actually perform the surgery????

I'm an absolute wreck... honestly this is my worst nightmare... My two biggest fears have always been breast cancer and getting my mother's illness.

I'm sorry for such a long post... I am frustrated, tired and emotional and am really trying to be strong for my hubby and kids, but I feel like I'm failing miserably. I needed to let all of this out or I'd have gone even crazier...

Thank you for you listening.

Lily55

Hi, waiting is just awful, i was told it was cancer in breast and nodes yet left waiting for appt and biopsy was another two weeks, it was hell, BUT in hindsight and given all i know now a few weeks really does not make a difference, if it goes beyond two or three months and cancer is very aggressive it can but this does not seem likely, so try not to panic, easier said than done i know.......

SpecialK

I had my annual mammo 9/9/10 which showed nothing, but because I always had palpable lumps it was followed by ultrasound which clearly showed the 2cm (20mm) mass.  I could not have a biopsy until 9/22, and the pathology did not come back until 9/27.  My first appt with the breast surgeon was not until 10/5, and I did not have the mastectomies until 11/1.  This is all pretty common - unless you have a very pressing situation there is usually no rush. I know how hard it is to wait but it seems to be the nature of the beast. 

MelissaDallas

To get through mammo, diagnostic mammo, stereotactic biopsy & excisional biopsy took me from the first of November until the end of April.



PASH is often left in place unless it gets big enough to give you problems, so they are just making sure there is nothing else lurking with the ALH. My stereotactic was ALH, suspicious for LCIS which it did turn out to be. Just an "increased risk" condition.



Most breast cancer is not hereditory, and even when you have a lot of cancer in your family if you do not have a first degree relative with breast cancer you may not even be considered genetically high risk.



The first place should not have made this sound urgent and increased your anxiety level. Most breast cancer grows slowly & has been there for years before it is detected.



Waiting really does suck though. It is the hardest part.

ballet12

Aside from the waiting, which can be really difficult, you suffered from a very insensitive scheduler.  I found that during that vulnerable time, when things were so uncertain, if someone was kind and sensitive it meant the world to me.  If they were rude or just insensitive to the issues, I was practically moved to tears.  In one large surgery practice that I went to for a second opinion, they called me to find out why I hadn't returned or scheduled the surgery.  On top of that, they sent me a certified letter intimating that I had been negligent in not following through with their recommendations, some of which were just not possible to do (MRI-guided biopsy of other breast couldn't be done due to location of nodule, etc.), or I had done elsewhere (brca testing).  They wanted me to sign and return the form to them.  Well, that sealed it that I was never going there.  Hopefully MGH isn't like that.  My current hospital, a very well known NCI-designated facility in NYC, which is a cancer center, trains ALL of its employees to be very sensitive and kind to the patients.  It is very apparent, and it has been a godsend.  Best of luck to you ((hugs)).

april485

I would write to whomever is in charge of the facility that employs the person who was rude and insensitive to you. I don't put up with things like that anymore. The older I get, the less I am willing to endure. You are the patient and you PAY their salary even if it is through your insurance. They work for YOU, not the other way around. I would call there again and ask the person (if it is the same insensitive jerk) who her boss is. When she asks why, tell her. I want to file a complaint about your rudeness and insensitivity. I am frightened and this is all new to me and you have no right to be an ass bag about any of this. (ok, don't use the ass bag part..lol)

Hugs and just know that we understand. Things are "hurry up and wait" with this breast stuff! Hoping that you get benign results from the excisional biopsy.

red_ali

Sorry for the rant a few weeks ago... I had my excisional biopsy yesterday... they took a piece about 2" out on the upper outside bt near my armpit... hurts like heck and I'm nauseous from the pain meds, but I'm glad it's done...

Now I wait... 7-10 business days, so we shall see.

Thank you all for your support and for listening.

All the best to you all!!