Probably Benign

Some advice would be welcome. I had my six month mammogram, after surgery, on February 22. I was told to wait and then was called in again for some additional images. of course, I was thinking--"this is it," but then radiologist called me in and said "all is okay," just checking against former images. Today, I received the report in the mail. I quote: "Your recent exam showed an area that we believe is benign. A six month follow-up is recommended."

This is the same type of report I had when I found the cancer. I pointed out an area to mammogram radiologist that I thought felt a bit lumpy; they took extra images then sent me for a sonogram. The report was "probably benign, return in six months." I went for a biopsy immediately, and it was DCIS and IDC (5mm), HER2 positive by FISH and IHC. I called my breat surgeon, haven't yet heard back, and believe I want a follow-up now. Should it be MRI, PET, or what. My September PET showed some take-up in chest wall and some in area of surgery; PET radiologist said it was probably a result of surgery.

Surgeon's nurse just called to say, "don't worry, probably surgery changes."

Advice about follow-up is welcome. Thanks.

[tousled1]

Grace,

It may just be scar tissue that is showing up on the mammo. They can do an MRI of the breast and if I were you I think I would insist on it. I know if I had that report, I couldn't wait the six months to see what happens. You can always call your surgeon and see what he/she thinks.

[Becky]

There are a lot of post surgery changes. See if you can actually get the radialogist's report (which is very lengthy versus what you get from the mammogram center). Also, see if you can see your surgeon and bring the pix with you. My surgeon is dynamite and explains all the changes (you continue to change up to 3 yrs post surgery but the most changes are in the first 2 years). She tells me what they are, what they mean and why certain calcifications are always benign (versus the kind that are not - and showed me my "bad" cancer mammo etc). I know she is exceptional but you should be able to get something out of your surgeon too.

It is always comforting to know that you really don't have to worry and I am sure that you don't. Unfortunately, we have to revert to being 2 year olds again and keep asking "why, why, why"!

I learned to get my mammo done about 4-5 weeks before a surgeon appointment so I would have pictures to bring everytime. This will always be my plan when I move to the once a year schedule.

Secondly, I always found it was difficult to sometimes get the full report. Now I have them copy my PCP who is diligent with making sure I get copies of everything so I copy him on my brain MRI etc so I always get everything. See - we can come up with all the tricks when you need them.

I hope this helps.

[Belinda]

Hi Grace, Queen-of-the-flaxseed-muffins! It probably is benign, but is there any chance your surgeon can refer you for an ultrasound-guided needle biopsy just to be sure? It's simple, pretty painless, fast, and good sonographers can find small things if they already know there's something to be found...I have had about 6 of them, and when they showed a negative result on some shadows on one of my former breasts , it was a relief. Even when they were positive, it meant things swung into action really fast.


Sending you peace-of-mind vibes. Belindax

Thanks to you both. I did tell surgeon's nurse that I wanted her to check with radiologist (same center) to see what he was looking at and why he had wanted extra films. Also mentioned that I wanted the detailed report. I also pointed out that I had some uptake in September in breast and axilla and elevated tumor markers so I'm not willing to be comfortable for six months. I also mentioned MRI or possibly another PET to insure these are surgery/radiation changes.

I hate being the aggressive patient, particularly as I like most of my doctors. I feel so often like a spoiled brat while at the same time realizing that it's the spoiled brat that gets the extra ice cream, or in cancer care those extra scans.

Thanks again.

[AlaskaAngel]

Grace, I am 5 years out, stage I, and my last mammo was BIRADS 2 (probably benign) with 6-month follow up. But by chance I happen to know fairly precisely how fast my original tumor grew, and now that 3 months have passed I have an appointment next week to have my surgeon examine me in Seattle (he has a sono machine in his office as well and will probably take a closer look himself). My last mammo has been sent to his office for me so he can review it and the report about the right breast ultrasound done at the same time the mammo was done, when I see him.

In the past year I posted an article on the articles forum that indicated that HER2 bc does generally grow faster.

As a rule, radiologists generally are not told what kind of cancer bc patients have had already, and my thinking is that they recommend 6 months based on seeing the broader range of bc patients. Therefore I don't think it makes good sense to wait 6 months.

AlaskaAngel

[Belinda]

I like my surgeon too, and what's more, his kids and mine go to the same primary school, and are in the same after-school care group.

BUT he allows the consideration of a wider range of options when I politely and respectfully engage him in equal-to-equal, informed and sometimes pushy "what if..." and "what about" conversations. Sometimes I have to be insistent, but we get there in the end. We have had a laugh about the fact that he referred me to a therapist who promptly loaned me a booked on 'how to be the impossible patient'! The title (as an affirmation) has been more useful than the content....

Be the brat, I say, one of the kind that ends up being given the icecream because they intelligently manipulate it that way, rather than screams the house down for it (but do that too if you need to!) - Bx

[KellyA]

Grace,


Please push for further tests. My story is very similar. I had (7 years ago) 2 separate surgeries, and each time had the lumps biopsied- both were benign. Well, in February of last year, I found another small lump in the same breast. It was immediately written off as another fibrocystic lump and I was made to feel like a hypochondriac. I can't explain it, but this time I had a sick feeling in the pit of my stomach and wouldn't let up. My doc rolled his eyes at me and ordered an MRI (I think just to shut me up). Turns out that 2 cancerous lesions showed up. One directly behind the scar tissue where the previous two surgeries were and the one thatI found. If it were not for the smaller one that I found, I would have never even known that the larger tumor was hiding behind the scar tissue.

My point is not to scare you, but to take each incident into account separately and NEVER take someone elses word that its probably nothing. In the end if they're wrong, its your life, not theirs. It's probably OK- but get an MRI or a biopsy to be sure. Then you will not have it lurking in the back of your head.

Love, Kelly

I took your advice, all of it excellent, and have sent an email to my doctor asking for an MRI or PET, or whatever. I'll let you know what happens.

[caya]

Hi Grace,


I agree with everyone - try to get an MRI - I had a mammogram and breast ultrasound at the end of June, 2006 - showing nothing!!!- went in for a breast reduction on Oct. 16, 2006 (not even 4 months later!!) - my plastic surgeon found and cut out my 1.7 cm. tumour - had a breast MRI in November before my mastectomy - that breast MRI found another tumour in my right breast (which was coming off anyways) - final pathology did find a second 1.0 cm. tumor -
I am premenopausal with very dense breasts - a recent study showed that gals like me are 5x more likely to get BC - so I will insist on getting the MRIs from now on -
I've always been the nice, good girl - not anymore - You just do what you have to and get whatever you need - we are fighting a beast, so I guess we'll have to behave like one (within reason).

keep us posted
Caya

[heblaj01]

Grace,
You may ask your onc if a double PET/CT scan at about one hour interval may be indicated in your case to eliminate any doubt about a false positive.
As you probably know, the second scan should show no increase in uptake (SUV number) to signify that a suspicious spot is not malignant.

[Jean]

Grace,
First of all you deserve to have peace of mine. After experiencing a bc dx.
we cannot take anything for granted. How could any report expect you to
wait 6 months? It is so silly of them to even think so. I always wonder if it
were their wife, mother, sister etc. if the tech would feel the same way.

I would just have the MRI to have peace of mind and have if need be time
to take proper action. I am sure Becky is correct and it is just changes from
your surgery, but it never hurts to check it.

All good wishes,
Jean

[Hopeful]

KellyA,

I can't believe your doctor behaved the way he did, especially since a history of benign breast biopsies is ITSELF a risk factor for bc. I am also struck by your description of how the larger tumor "hid" behind the scar tissue. I thought of my own tumor as "hiding" also - it positioned itself slightly beneath the upper left areola of my nipple - a position where it was very difficult for the doctors to palpate it and extremely difficult to visualize with us. The computer check of the mammo against the prior years' detected a small area of difference described as an "architectural distortion" which allowed the radiologist to pick it up with magnified views. At times, it makes me think the disease is actually sentient and knows exactly what to do to survive. (I know, I scare myself, sometimes!)

Grace,

Do whatever you need to do to give yourself comfort and sleep well at night. No one needs something eating away at their peace of mind. I have read enough of your posts to know you can firmly - yet gracefully - get your medical team to give you the requested attention and treatment. Best of luck to you, and please let us know your results.

PS - I have posted in the articles of interest forum a story on yet another new technology for mammography, called CT Laser mammography. It is not invasive, does not involve compression, and is reputedly able to detect angiogenic activity, which would indicate tumor growth. Hope it is available here soon!

Hopeful

[MGordon]

Cannot agree more with the "more tests" theme your hearing here - but I would lean more toward the ulrasound guided needle biopsy. MRI/CT etc are great - but for peace of mind with an already identified area of mass - the short needle biopsy can provide REAL metrics!

My 2 cents

Love and Light
Mel

PS - Congrats on staying so dilligent! Way to be part of your team!

Hi--thanks to all of you who responded. I called my breast surgeon's nurse and also send an email to the surgeon asking if I could have some further tests, or at least some reassurance that the BI-Rad3 finding was really benign. My surgeon initially responded that she preferred not to do an MRI this soon after surgery as I would probably get a false positive. She also said she would talk to the radiologist further but that it's usual to give all lumpectomy mammograms a BI-Rad 3 reading--she said it's a way to alert radiologist in the future to look closely, as this is someone who had breast cancer.

Today I saw her and her nurse, while there for my herceptin infusion, and she told me that two radiologists had reviewed my films and that what they had seen was, in fact, changes from surgery. She agreed that my next mammogram would be digital (my breast is still dense and difficult to see through). She did tell me, though, that digital mammograms are not as good at spotting calcifications, so that's a concern since I had DCIS as well as IDC. Oh well, I guess no test is perfect for everything.

Thanks again for your support.