Finally, mammo results...I'm worried!
 

They FINALLY mailed me my mammo results. Why they couldn't tell me on the phone last week is uncalled for in my opinion. How nice to get the letter on the weekend when I CAN'T call anyone about it. But the letter says, "The above breast examination showed an area that we believe is benign (not cancer.) However, you should have a follow-up mammogram of that left breast in 6 months, to confirm that this area has not changed.

I CAN'T imagine WAITING SIX months to have it re-checked. No way! With the type of bc I was DX with last year...they really expect me to wait that long? Alot could change in SIX months. I think that is asking too much of me. I would think they could at least check it out with ultrasound & MRI.

I plan to PUSH for a MRI asap. I know there is no way I could WAIT that long to have another mammo. This letter doesn't tell me how big this thing is on the mammo...nothing. I have been having a slight annoying pain in that left breast...thats why I was getting upset with them making me WAIT for the results. This is a new pain...the exact same kind I had in my right breast when I was DX last year. So how can they expect me to wait that long when I am a stage III'er, her2/neu 3+++, positive nodes.

My hands are literally shaking right now...I am so nervous. Would you guys WAIT SIX months...or request a ultrasound and MRI right away? (Which I PLAN to do the minute I get to the center this Tues. for my herceptin.)

Chelee

You and I both have the same evaluation and recommendation this time around.

Although it is taking longer than I would like to get it to happen, a copy of the actual written mammogram report is being mailed to me and I hope to get more of an idea what kinds of things they saw and what kinds of things they didn't see.

Your doctor is supposed to get the actual written report so that if he or she has any concerns, he/she can go to the radiation department and look at the mammogram personally and talk it over with the rads doc.

I too am not very enthused about a 6-month wait for me, since my last lump grew 0.5 cm in less than 6 months. I will wait to read the actual report, however.

But I am stage 1 and DID have rads, and you are stage III (?) I think and didn't have rads, so if I were in your situation I would be much more inclined to push for more analysis.

What happens here is that unless for some very unusual reason the rads doc happened to know by chance that your cancer was HER2, most of the time they only are aware that you had prior breast cancer. And I feel that HER2 bc does grow faster than the average bc. So... IMHO 6 months' wait probably isn't a good match for any of us -- Stage I or II or III or IV.

There are a lot of things about being HER2 positive that I hope get more attention with general breast care providers, and this is one of them. Your doctor and mine I think should be considering that we are HER2 positives when they look at the actual report, but I won't and don't hesitate to bring it up myself in case it has slipped their mind, or in case they need some one-on-one reinforcement about how fast it can grow. In my case I tend to think 3 months might be the longest I would be willing to wait... depending on what I read in the actual full report.

AlaskaAngel

I would not wait six months, but please do remember that I am hardly patient or relaxed about these things. If it were me, I would ask for an MRI, but to be safe (especially with your previous history), would ask for a needle biopsy. I had two benign lumps in the past (about 7 years ago) and had both of them biopsied- and that was with no history. The fact is that the lump or area is most likely nothing- I don't think that they would want to wait six months if it looked "iffy", however, just for peace of mind, I would push for more.

I think you are completely justified to be a little upset with the way it was handled and completely understand.

Take a deep breath, try to relax and enjoy the next few days, and make up your mind to handle it the way YOU feel is best when Tues. comes around. You are completely justified in wanting more for your situation.

Love, Kelly

i too, just went for my mammo and had the same result - had consult with surgeon immediately set up the appt back to back - and I was very glad that i did. Surgeon called the rasdiologist who said it was scar tissue. That was the reason for the " probably benign come back in six months." Surgeon said ni reaso to go back in six months since MRI is already scheduled.

her take is that for anyone with dense breasts mamo are virtually useless even with the new digital technology - sonos won't pick up the very small tumors and the only reason to do mamos is for the calicificatios which MRIs do not pick up.
memorial LSoan Kettering i New york is not even doing routine sonos anymore. mamo/MRi only for routine screeigs post and pre operative.
My surgeon did give me a sonogram script that i can have done elsewhere ( if it will make me feel better). Not sue i am going to do it .

Unfortunately for thos eof us who have had lumpectomies - scar tissue is a fact of life and thus the "probably benign" will become a fact of life. I hope this makes you feel better.

Susanne

Chelee,

If I were you, I'd be on the phone Tuesday morning to my oncologist and getting an MRI of the breast scheduled. It's sad the way that this was handled but now you must think ahead. If your oncologist will not for some reason order an MRI then I would get the first appointment with your surgeon and have a needle biopsy of the area done. Best of luck to you.

Alaska Angel, I want to get my actually report of my mammo as you mentioned. As far as I know nothing was found in my left breast on the mammo last year when I was DX? So I would think this is brand new. (But I want the details, as do you.)

So first thing Tues. I will call ahead of time and ask that they have the report ready for me when I get there for my herceptin that day. Then while I am there...I will request a MRI from my surgeon or onc...and see which one wants to authorize it asap. (Because I am NOT waiting!) As you said Alaska, these grow fast. Even three months for me is un-acceptable to wait. If I didn't have this little annoying pain in that breast...I wouldn't be near as anxious about it. And yes, I am a stage IIIA, positive nodes, NO rads. In fact, that breast as felt larger which concerns me?

Hopefully my surgeon will be calling ME Tues to come in to talk with him about this since my mammo was READ at *his* breast center. I know I sure took the time to *remind* his nurse all week that the only reason I KEPT calling for my results is because of my Her2 status. She acknowledged it and said she completely understood.

I want to get my hands on the actually report Tues which should be no problem. Then I will know exactly what they found? This letter tells me nothing...just enough to worry me as I am sure you can relate too.

Chelee

KellyA, I'm not real patient either...especially with something like this. I would like to think my surgeon would of had someone call me if they were real concerned as you stated. But lately the way things have went for me...I have to follow-up and double check everything. (this her2 bc changes many things in my opinion.) We don't have time to wait and see as my letter states. Thanks for your very supportive post. Its much appreciated. I will *try* to relax a little...but it will be difficult.


Tousled, I am glad I am not the only one that feels this was handled poorly. Gee...really nice mailing this report to me on the weekend BEFORE Christmas. They might as well waited till after Christmas...its almost like they wanted to ruin my holidays. I called all week and supposely they didn't have it...then it comes on Saturday? At least I can talk to my surgeon and or onc that same day. I won't leave till I get answers and a MRI set up.



Susanne, In my case I didn't have a lumpectomy. I had a modified radical mastectomy of my rt breast last yr. So in my case...its definitely not scar tissue. My left breast has had nothing done to it. (Yet anyway) If I would of had a lumpectomy of that breast, I would be less worried. But thanks for throwing that out there. http://www.her2support.org/vbulletin...lies/smile.gif

Chelee

Chelee

I just want to echo what everyone else has said, I would definatly NOT
wait six months and push all you can for more testing.
It's a fact that even in this day and age we have to be pro-active
with our health care and just can't trust to Dr's.
I'll be praying for something benign (trapped nerve or similar) to account
for the pain,but you know your body best!
Tricia

Chelee,

After all you have been through with your health care providers, this treatment seems not only unprofessional but downright mean. I think requesting a needle biopsy is an excellent idea, for peace of mind if nothing else. Best of luck to you come Tuesday.

Hopeful

Chelee,

We empathize with your desire to not wait the 6 months. This waiting and not knowing is the worst part of all of this. Who wouldn't feel that way?
You do have something positive to hold onto, and there is an alternative that is available to you.

The report did contain the word benign? Hold on to that! It's been hard for Sue and I to remember that good news is sometimes just that... we've questioned good news more rigorously than bad sometimes.

Why not change health care providers? If it is possible for you, Southern California probably has more than a few excellent doctors, and you could probably take your films and reports to them and voice your concerns.
Despite the urgency and seriousness that cancer brings, we are still consumers, potential "sales" to doctors, and there is always some that will work for you if you find them. Do what your heart says.

We've learned to be very direct with doctors, the hard way. We've learned not to walk away confused or unsure or unhappy. Most doctors we've found are more than willing to be the best help they can...they just need to be reminded of it sometimes...they get swamped by life too.

We don't want to sound authoritative, or that we know something you don't, but we relate to your concerns directly and can easily see us in the same place you say you are in. We try to remind each other to take a breath, hold on to good news, and maintain our determination. Some days are easier than others. The ones that are toughest have us here, listening to the experience of others.

Let us know. Enjoy your Holiday, and know we are thinking of you.

Hopeful, Thanks so much for your support. I'm glad I am not the only one that thinks it was mean. Even my family is not happy about it. I called them all week for the report...just got the run around.

I am stressed about it because of the pain I have in that breast. I've been aware of it for a month or longer? At first I had been noticing a pain under my left arm that ran into my breast area towards the top part. I tried to convince myself that was the catheter from my port that runs from my arm into my chest. But now the pain radiates from the upper axilla area down to my nipple which looks sort of puffy. So with them finding something on the mammo, and this pain I have been having...I am stressed.


Kevin, I hear you. I am trying to think positive that this still could be benign as the report stated...and it would be easy to do if it weren't for the pain in that breast I have mentioned. I am still trying to believe it might be related in some way to my port placement. The catheter runs up my arm and into my chest. Not sure how far it goes?

As to changing doctors...thats a long story...but I am currently in the process of changes when it comes to a new onc. Things just have not worked out as I was promised. But I hope so soon. I don't want to go too far because I have TOO many other doctors in this group. Pcp of 20 yrs, surgeon, pulmonary, neuro, & cardiologist. But things are in the works...so I keep getting told. Its amazing how I am very happy with ALL my other doctors...its just this onc I am having problems with. All the others will answer my questions and do their job. I just don't know how she continues to get away with what she does?

Wishing you all a very Merry Christmas! Best wishes to all.

Chelee

Hi Chelee,
I am up becaause I am coming off the decadron and was upset that you are still having to deal with appropriate treatment and answers, and you don't need it, especially at this time of the year. My heart goes out to you, especially because you have had to fight and advocate for yourself so much this past year. I agree with the others to get an MRI of the breast. You have receeived good advice here. Just know that you are in my thoughts.
Best wishes,
Barbara H.

Hi Chelee,

The same thing happened to me HOWEVER my surgeon and the radiologist wanted the "calcification area of question" biopsied righ away. I had a stereotactic (I think that's how it is said/spelled) biopsy of the area and thankfully it came back benign. BUT at that point I decided a mastectomy of that breast was definitely something I wanted. To be honest, when my initial breast cancer of my right breast was diagnosed I wanted both breasts removed but let my first oncologist talk me out of it. The fearful event with my left breast confirmed, beyond a shadow of a doubt, that no breasts was best for me.

Thankfully, my insurance approved it and also VERY THANKFULLY after breast was removed, absolutely no cancer was found in that breast.

My heart goes out to you and most definitely PUSH for more answers.

marejo

chelee,

YOu need to ask for a mri. I'm a nurse and just talked recently to a radiologist about mri versus ultrasound. He thinks ultrasound is not really worth doing anymore. You can miss things he said. Mri is much more accurate for young women. I don't think why they would deny you that. dont think too far ahead. Mammograms are just a first line test, it does not in any way say that it is cancer. It can't tell that for sure.

Hi Chelee, I guess you know my story but just wanted to remind you that stage 3 her2's can't afford to be put off for any reason. My Onc talked me out of a double mastectomy and thought I would be satisfied with a "probably benign" reading on my MRI - but I just could NOT rest with that. I felt safer with the other breast gone. The stereotactic biopsy completely missed the invasive part of my cancer and only diagnosed me as DCIS. So many procedures so little real information. Wahhh - in a way you have to go with your gut feelings about this. I felt uncomfortable with waiting another 6 months and even though it was benign - I have never regretted getting rid of the other breast. Hope you get some peace and satisfaction after all this! We are pulling for you!

Barbara, marejo, Micheleu, & Kimberly, Thanks so much for all your replies and support. I have giving this all alot of thought this weekend. I am tired of all the added stress caused by my onc. And now I get this mammo report the WEEKEND before Christmas. It just seems cruel to me. Ruined my Christmas. But I am not just going to request a MRI...I decided I am going to tell my onc and surgeon I want a mastectomy of that breast. I WANTED a bilat last year when I was first DX. But like several of you...he talked me OUT of it.

They better not try talking me out of it again...I want it gone. This is too much stress just like I thought it would be. I don't know why my surgeon pressured me to just do a mastectomy on the one breast with my DX? Its seems to be MORE common then I thought for these surgeons to talk women out of the bilat? I see it happened to several of you women that replied. I hate the thought of another surgery but its better then this constant worry and repeat mammo's.

Thanks Michele...I DO plan on asking for the MRI. At this point it probably is pointless to have a ultrasound. I just want to know whats causing this pain in that breast and the extent of what it is they see? I should find out tomorrow some time.

I hope everyone had a wonderful Christmas! Here's wishing each and everyone of you a Happy New Year!

Chelee

Chelee,

I am sorry that you are going through all of this mess. I just wanted to add something that a breast surgeon that I went to for a second opinion early on told me. I was asking her about something on my pathology report, and she told me that you will notice the words "suspicious" when the doctor believes there is a problem. You will notice the word "probably" when they feel there isn't a reason to be concerned. The way she explained it to me was that they cannot say for a fact that all is well, UNLESS they do a biopsy to prove it one way or another. They are the generally accepted terms for charting. They also cover the butts of the person charting, who cannot determine for sure without a biopsy. At my last mamo & ultrasound a few weeks ago, they checked the box on my paper which reads "begnign appearing (not malignant)....just below that are the words "probably begnign", above "begnign appearing" is the box for "normal". Since we now have history with BC, I am guessing we will never get a check mark in the "normal" box.

Oh Chelee....I hope this helps. I am hoping that things are well for you. Let me know how you are making out.

Sending Love your Way,

Susan, Your post makes lots of sense, and YES it DID make me feel better. This mammo report just says they "believe" its benign. The word is not near as alarming after reading your post. (Thanks so much for passing that on to me.) I'm glad your surgeon told you that.

Thanks again Susan for sharing that information with me, I REALLY appreciate it. I read your post last night and I felt better right away. http://www.her2support.org/vbulletin...lies/smile.gif

Chelee

Update...
 

I finally got ahold of the nurse at my surgeons office regarding my mammo results that were mailed to me. I really thought they mailed these to me during the holiday weekend as payback for my complaint against my onc.

But when I got the nurse Wed at my surgeons office and told her I got this letter that says they found something on the mammo and to follow-up in six months...she was ticked. (Not at me.) She said "they" weren't suppose to mail me anything. She said she talked to them personally and told them how it was to be handled. She said my surgeons office is supose to notify me with the results.

(Plus I talked to my chemo nurse that had her mammo the SAME day I did...but she had her mammo there at my surgeons office.) I had to go across town. I asked if she got hers and she said NO...they were SUPPOSE to mail her the results but she *hasn't* heard from them.

I didn't dare tell her I got mine in the mail. Maybe the place I went too mailed them to me because I called then a couple times telling them I wanted the results asap. Either way...unless they are all very good story tellers...it really sounded like my surgeons nurse was mad that they mailed that too me. (But it sure NOT nice to make someone like me with my kind of bc WAIT that long!) Thats un-acceptable to me.

But I told her what the mammo report said and that there was NO WAY I am waiting SIX months for a follow up. I told her I want a MRI of it and I also want to talk to my surgeon about a mastectomy of that breast regardless of what they find or don't find. I want it GONE. This is TOO stressful. My surgeon SHOULD of removed it last year like I wanted him too and I wouldn't be going through all this.

So the nurse has an appt set up for me NEXT Wednesday morning.

Chelee