Complex cysts *UPDATE*

SandyInNJ63

I was diagnosed 5 years ago with cancer in my left breast and had a single mastectomy. In May, I had my annual mammogram (negative), and an MRI at my insistance, which resulted in a solid lesion lighting up. They believed it to be a lymph node, but needed further evaluation to determine. So, I had an ultrasound, which showed the solid lesion to be, what they believe to be a normal lymph node, as well as several complex cysts, a septated cyst, and a cluster of microcysts.

The radiologists report recommended a follow-up mammo in 6 months (why? mammo never showed anything to begin with!), my oncologist reported that all was ok (huh? she never even mentioned the cysts to me) and my primary doctor believed there was no harm for me to wait the 6 mos., but that it was my choice if I wanted to pursue it sooner.

I thought I was ok with waiting. Apparently I'm not.

After 3 months of contemplating, researching, and finally asking the expert on the John Hopkins site (who recommended pursuing sooner, rather than later, due to my history), I've made an appointment for Monday with my breast surgeon to see what he thinks.

So, I was wondering how many of you had been diagnosed with complex and/or septated cysts, only to have it turn out to be cancer. The research I've done says that it's rather rare for that to happen, however, it's also not common for a woman under 40 to get b/c or paget's disease, and I managed to get those, so I don't really trust probability factors much.

wallan

My original cancer looked like a complex cyst and that was what I was told after mammo and 2 ultrasounds. I didn't follow up for about 3 months, but then my nipple started to invert, so I insisted on a biopsy. I had a 7.5 cm tumor under that cyst.

So beware!

Good luck to you... I truly do hope yours is B9.

Wendy A

SandyInNJ63

You mean your mammo and 2 ultrasounds didn't see a 7.5 cm tumor??!! That's just crazy! I have no faith in mammograms, because they seem to consistantly miss everything in me. But I always felt ultrasounds were pretty accurate. I guess there isn't any method that is completely reliable.

Thanks for sharing your experience.

Anonymous

Sandy, I DO NOT trust any of those "machines."

I had a mammo in March '04 and a clinical breast exam. And my gyn gives a good one. In December '04 I found my lump.
However, after my had neoadjuvant chemo I had an MRI to find out how much my lump had shrunk. I also had another tumor in a different quadrant of the breast which showed up on the PET/CT scan. Guess what! The 1 cm tumor DID NOT show up on the MRI. Since we weren't sure if the tumor was still there I decided on a mast instead of a lumpectomy. Good thing!
Shirley

Valsul

Like Wendy I had mammos and needle aspiration and US - all benign. Nipple started to invert - 4.5cm tumour, grade III stage 2.

Spoke to my onc registrar last Tues when he talked about mammo and told him mammo was no use. He said MRI no difference in results in post-menopausal women. That means if the mammo missed it so will the MRI.

So I suppose I just wait for another lump and inverting nipple again as an indication of cancer?

Indigoblue

Dense Breeast Tissue hides lumps, even from the ultrasound.
I had fibrcystic breast, but they were smooth, ovalite, and didn't have "cancer" characteristics. I was having pain from the cyst, but when the aggressive 1.7 cm was discovered, a smooth round cyst was sitting right next to it. Another cyst was in the same exact spot on the other breast as located and comparend on ultra and mammo.

Was told not to worry about it. Triple negative, aggressive stuff, and recommendation was a lumpectomy, which became a partial mastectomy, quadraectomy, whatever it is...the length of the cancerous tunor 2.5 cm, and stellate, 2.2 mm from the chest wall, which is extremely close; as I discover much later after a year of treatments.

This is why I regret not having a bilateral, as well as wonder why the surgeon did not remove the cysts, or at least aspirate them. The likely fact that they will become cancer is looking obvious, now that I read these threads and know more that I really want to about breat cancer from all of my research.

I should have had a bilateral, no doubt about it.

Indi

By the way, when comparing MRI with the Mammo, it was remarkable as to the clarity and precision at siting and locating these lesions, and other cysts, nodules and calcifications in my breasts. I am sorry I didn't go with the oncologist who showed me those pictures and compared them. I listened to the surgeon, who had me completely convinced I'd be cured. He is still telling me I'm cured.

What a crock!

SandyInNJ63

Yeah, I'm beginning to wonder if I should have insisted on having the double mastectomy. It was never suggested to me and when I asked, they said (after carefully screening that breast) that it wasn't necessary. Also, I really wasn't prepared to lose both, I could barely cope with the idea of losing one.

Valsul

When I was having my mast another older lady in the hospital had just had her second mast. Twelve years before, she had had a lumpectomy then a mast. She wished she had had a bilat in the first place.

I didn't think much of it then, still reeling from the shock and horror of what I was facing, but now I think that quite possibly I should have had a bilat.

At the very least I wouldn't be lopsided

Dar1

When the radiologist did my US he saw a cyst, said it didn't look like a regular cyst as the edges were rough. They aspirated and the cancer was behind the cyst. I wonder if there is a relationship between cysts and cancer? My onc mentioned it - said both may be from overactivity of the breast tissue and present together. I would pursue any cyst - at least have it aspirated.

wallan

Well, I think I should have screening MRI's in the other breast. But my oncologist insists a mammo will catch anything. I say... "Ya' right. It didn't last time." She says that is because I had dense breast tissue because I was premenopausal and that someone inexperienced read my mammo wrong... So I said "you mean it was missed the first time?" and she said, "well, here at the cancer centre, we read mammos correctly"...
Whatever that means... the bottom line is she will not agree to an MRI to screen the other breast.

And lately, I have noticed that my other breast has changed shape. There is no lump or anything, it somehow looks different. I am thinking of having it cut off too...

Wendy A

SandyInNJ63

Quote:

---

Whatever that means... the bottom line is she will not agree to an MRI to screen the other breast.

---

That's just insane! Sounds like insurance companies are coming down on them. It's hard to believe this isn't about money. If I relied on mammogram only, I still be sitting here with cancer growing from years ago, I guarantee it. Only now I'd likely be stage IV and fighting for my life.

SandyInNJ63

I saw the surgeon today, and he said he wants to remove the complex cysts and the lymph node, otherwise, he said, I will never really know for sure. He said my doctors are likely to keep sending me for 6 mo. checkups to keep "checking" it. He'd much rather get them out now (needle loc-exisional biopsy). I like this doctor, he always errs on the side of caution. It's being scheduled for Sept 21, due to my schedule and his, so it's a bit of a wait. I'm not letting myself get too worried, I just need to know one way or the other.

Unlike my mom, who is having a similar scare right now, but she doesn't really want to know. I was able to convince her to follow-up, which she will be doing on the 24th when she re-visits her surgeon for re-testing and a possible biopsy - - same breast as me. I'm more worried for her then for myself. She has other major health issues and really isn't physically or emotionally strong enough to handle much more.