Update to "Is this ILC?" - FRUSTRATED

melevebos

OK, so I saw the surgeon yesterday. He refused MRI. He said he wants another US. I asked him why since the other US was negative. I thought I had mammo and US last year, but when I pulled out the films, turns out it was 2 years ago He said that since new developments and changes in my breast have happened and since the US was 2 years ago that it is possible something would show now. He also said there are good and bad radiologists and maybe we got a bad one last time. He said he can't possibly believe that he could feel what he was feeling and that it wouldn't show on US. I know there are good and bad radiologists, but totally dismissed this possibility and was disappointed and frustrated when I left that he wouldn't order MRI.

So this morning I got curious and pulled out my old US and mammo films and report and looked at them. On the US films I saw one shot that had a distinct oval area with an arrow pointing to it and another shot that they drew a square around it that appeared to be the same area but through a different setting on US. Now considering that the US report was stated as completely negative with no further detials, imagine my shock when I called in today, had them pull up my films and was told that what was highlighted was an enlarged axillary lymph node (almost 2 cm) and calcifications!!! Had I known this 2 years ago, I certainly would NOT still be sitting here 2 years later with this crap in my boob.

So now I'm just hoping like hell that this is not cancer that has had 2 years to grow and spread through my body. I am freaking out completely, whereas before I was more just "concerned".

The good news is that I am going to an actual breast evaluation center. They told me that even though my doc didn't order it they will do a mammo as well since the last one was read as negative, but noted an increased density in the upper outer quadrant of left breast compared to right breast and prior mammo. They also said that the radiologist will sit down with me at that appt and discuss my results and if need be THEY can order and MRI. Also, being uninsured I qualify for the WALK program and will get my scans for free!!!!

So while all of this is good news and heading in the right direction, now I have a week to sit here and totally go insane. How does everyone deal with the waiting? I keep telling myself that I am going to watch TV or play with the kids or do something to distract myself and I keep ending up back here reading to get more information. Distracting myself is not working.

Sorry this post is so long, I have alot on my mind apparently.

shrink

Got any anxiety drugs? That helped me wait.

melevebos

Nope.

Lynn12

So sorry about the waiting, I know how awful it is. After I was diagnosed, I had to wait a month while I got an MRI and surgery was scheduled. I called my PCP and got a prescription for Ambien to help me sleep. He did not hesitiate to give me something. Perhaps you can call your PCP and get Ativan or Ambien?

LizM

Melissa, I know how hard this it. I lost 20 lbs from my first biopsy in 2004 to finally being diagnosed with bc in 2005. Take heart in the fact that you are pushing forward and you will get an answer to what is going on in your breast. If they don't see anything on the US; however, I would push for an MRI for your own peace of mind. I regret to this day that I did not have an MRI earlier as I suspect my breast cancer could have been found at an earlier stage. Take Care. Liz

LizM

Went back and read your other post. I didn't realize that you had a lump that could be felt. If that is the case, can't you push for a biopsy. I had a thickening in my breast for two years. Everyone under the sun, two gyn docs, two breast surgeons (one at a very well respected cancer center) and others all said my thickened area was fibrosystic dense breast tissue, NOT!!!!. Keep pushing until you get answers.

melevebos

The surgeon I have been seeing until now originally thought it was a fibroadenoma, but refuses to do needle or core biopsy and will only do lumpectomy, which is why I wanted the MRI. I don't want anyone cutting on me unless I have something life threatening. Hopefully going to the Breast Center next week will be a better path. (I have been seeing a general surgeon, not a breast specialist.)

nash

Melissa--I'm sorry you're going through this, but I have to say I'm so happy to hear you'll be seen at a breast center next week and that you qualify for free scans. Your previous surgeon sounded like a complete dud to me, and I didn't think his approach in evaluating your mass was right at all.

The waiting part sucks, big time. Actually, spending the time educating yourself, like you said you're doing, is highly productive because it will enable you to ask the right questions. As you've already learned, the doctors don't always know best, and they will not volunteer all the info that you need. You have to be your own advocate.

Hopefully things will turn out benign, but if they don't, it sounds like you are on a good path to good care. Once you know what's what, you can deal with it then. I will be praying for a happy outcome for you. Keep us posted.

Anonymous

Good luck Melissa! Yup...the waiting does su**. After my ultra sound showed something HIGHLY SUSPICIOUS AND MOST LIKELY MALIGNANT...they couldn't squeeze me in for a core biopsy for 2 weeks...talk about going nuts...But all you can do is hang in there. I hope everything is negative...don't forget...the odds are on your side!

marshakb

Good luck Melissa. We've got your back. You are not the only one dealing with a crappy surgeon. Mine too is a general surgeon and he seems to think he is God. I never had an MRI done on the "good" breast. Which to me is insane considering this is lobular I am dealing with. I have an appt Monday with a breast surgeon at a breast cancer center. I have my original mamm/us, all my path reports etc and hope this guy will look at my whole picture. Unfortunately it seems the 4 docs I have never communicate about me and I am constantly saying "well the onc said" or "shouldn't I come off this SSRI now that I am on tamox" etc etc. I am very tired of having to use Dr. Google. Get this, my onc gave me effexor for hot flashes without explaining what it was. Dr. Google informed me it was ANTI-DEPRESSANT. Hell, when he wrote that order I was still on the SSRI!!! GEEZ............

The waiting is the worse part, our imaginations can get quite vivid and haveing the truth, while it can be scary, at least gives you a course of action. Take care, hugs, Marsha

1Cathi

Yes Melissa you are not alone, I to like you and Marsha have been seeing a general surgeon, my onco is a total idiot, love my GP, but most of this is out of his hands, I have been to hell & back it seems this past year will what seems like doctors who just don't care, on August 28th I to am finally seeing a highly recommended breast surgeon/onco here in Florida, took a year to get in but finally have the appointment. Marsh you mention the Efforex, my onco prescribed that to me also for hot flashes, never mentioned a thing about it (of coarse this is the man who said in hos 25 years he had never seen any bad side effects from Tamoxifen) until my husband wheeled me into his office in a wheel chair unable to function! Anyway, I hate taking meds and by thos time was already hating and not trusting him, we filled the prescription on the way home, I took one, and then we started researching, OMG!!!! I found sites & forums where women were begging for help to get off it (women w/BC using Tamoxifen) it is highly mind altering, you must be wheened off it if taken on a regular basis and is used in alot of rehap for drug abusers. Well anyway I never took another one. I didn't need to ad that to my list of problems, just started popping more black coash, and about 3 months off tamoxifen, they have stopped -well to normal for my age.
Melissa hang in there all these wonderful ladies have helped me through some tuff times lately, keep coming back - keep reading. The peace you feel here is wonderful. XOXOXOXOXOXOXOX

dobie

Just a comment about Effexor.- Like many on this forum know only too well, side effects are as varied as the people who take the drugs. Side effects from Tamoxifen and/or Effexor can be minimal or much more. Effexor can be very effective for helping with debilitating hot flashes- which can also be very mind altering! It has been used for this purpose for quite some time as well as being an antidepressant. Maybe not as effective as estrogen but safer for those of us who can't take that. Each of us will decide what risks and benefits we are willing to take and what effects our quality of life. I am not at the point in my treatment where I need to make that decision but I will consider Effexor if I need to. I know that it has been very helpful for some.

It is interesting to note that the hospital where I work and where I am being treated is conducting a study comparing the use of effexor vs accupuncture to treat hot flashes in women taking Tamoxifen. That would be great if we could get insurance to pay for accupuncture treatments. Hopefully the future will hold more options and safer options for these issues.

marshakb

dobie, by no means am questioning that effexor can help some women with dipilitating hot flashes. I, for one, however, expect to be told by my doc who is prescribing a drug for hot flashes that it is an anti-depressant. My pcp insisted I go on an anti-depressant after my dx and I found it made me not give a good damn about much of anything. so for me, an anti-depressant is not the answer. It's about the KNOWLEDGE. And yes you should consider it when you get to that point.

dobie

Good point. I agree that many times physicians do not give enough info about risks and benefiits of treatments they are prescribing. So much for "informed consent"! Also they don't talk enough about alternative treatments. Many will get into a fixed menu that they tend to prescribe for everyone. When they see a patient every 10 min. individual consideration often goes down the drain. So the message, I believe, is- listen carefully, consider all options, do your homework, advocate for yourself.

1Cathi

I also was in no way trying to discourage anyone from trying anything, but we are encouraged to make "informed decisions" I have found that quite hard to do when the people I have intrusted my life to neglect to "INFORM ME". Why must I have to reasearh everything on my own, it has taken me a long time and I still have to get alot better at it, but from here on out I will take nothing, not have one single think stuck in my body removed from my body until I know anything and everything about it. It is time for me to stop feeling like a Guenie Pig.