Mammography results...anyone experiences or advice to share?

Hello everyone. I'm sure at some point there has been a discussion regarding breast exams and xrays but there are so many posts I simply can't search through them all. I just had a battery of xrays, ultrasound and spot compression to find that my left breast deep near the chest wall has a suspicious area. I was only diagnosed in April and it too was on the left side. I felt I had to tell everyone (including the radiologist) a million times about sarcoidosis and asked if that could be what they are looking at. I got the standard "insurance safe" response...lets biopsy it and see or wait and take the chance. I was further advised that the needle biopsy would take a couple of hours and because of the depth of the area, certain test results may not prove conclusive but they could do a surgical biopsy which is more invasive where a larger incision around the areola is made and a definite sample is taken but certainly a lot of recovery will be involved. I just had a mediosticopy (sp?) of my left chest and its just now healing up...should I proceed forward - please respond with your recommendations. I will not hold anyone harmful, I am currently reaching out to my GYN, PULM and Internist all for their responses too before making a decision.

If you've had a mammography go bad or questionable and can spend a few minutes to respond I would be very appreciated.

Thanks and God Bless you all.
Your friend in sarc.....

By Cloudnine
Posted August 29, 2008 at 11:16 pm

I had a mammogram and then an ultrasound. Then I had a breast MRI. The breast MRI was really nice because they could really see more. I had several spots in my left breast and since I have already had cancer, not breast cancer they were trying to be very careful. These spots were so far back in the chest wall that I would not be able to feel them with a self breast exam.

The spots were actually first found on a CT scan and then I had the mammogram, they showed up there. They then took me to ultrasound the same day and they couldn't find them. That was in Sept 07 and then in Feb 08 I did the breast MRI. Have you had a breast MRI yet?

I did all these things because I did not want to have to have scarring in the breast tissue if at all possible. Sometimes it is necessary. My mom did the wait and see and it did not change, but the not knowing was frightening for her.

If you have not had a breast MRI, this might be something to look into.

By tonyad
Posted August 30, 2008 at 6:56 am

Hi Snoopy,
I have also had a biopsy. Actually (2) in the past.
Mine turned out to be a cyst and very dense breast tissue.
Sattistically, when they do find something on a mammogram or ultrasound, The percentage is very high that "All Is OK" than not.

I can certainly understand how you are feeling. Not knowing what is going on. I will keep you in thought and prayer.
Please keep us updated.
~Tonya

By quinda
Posted August 30, 2008 at 8:21 am

ABSOLUTELY PERSUE THIS MATTER CHILD. My yearly mammogram showed (June 08) a deep breast tumor (2cm) and they said it was suspicious. They did a core needle biopsy, (no big deal) quick healing on that and it came back cancer. They can also do a fine needle biopsy in some cases. When they went in to do the lumpectomy they found a 2cm tumor to be four, off to pathology and came back unclear margins. This means more cancer present. They did mastectomy (all this summer) and it came back to be a total of 6cm of tumor which gave me Stage III Invasive Cancer. Then I discover that mammograms are only showing 80% of the cancers which I never knew and that what we really really need is MRIs in the first place, but oh no, way to costly for insurance to pay for all of that. Now my insurance gets to pay for breast cancer with $5000.00 shots after ever y chemo therapy. So...............yes, gals if you are reading this it would be to your advantage to pursue every little thing even though it doesn't look too suspecious. Also there was another little "gathering" if you will that did not look at all suspicious on the mammogram and ultrasound and when it went to the lab it was FULL OF CANCER. i KNOW IT IS A NUSANCE especially when we are dealing with this sarc thing but if you want to live just do it. If I wouldn't have done it I would be dead shorly.

By goofygoldens
Posted August 30, 2008 at 10:29 am

I just had a needle biopsy done on what they suspect to be very"dense" breast tissue. I found the lump when I was premenstrul because my breasts were so full of fluid the lump was easy to feel. Otherwise it sits very deep down. The mammogram and ultrasound came back normal but my great gynecologist called me back for a recheck anyway. She still felt it and said lets have a breast surgeon look at it. That is who did the needle biopsy on Monday. They said the results would be in yesterday but when I called the girl in the office she said I will have to wait for 10 days to 2 weeks for the results. Seems the lab they have to send it to because of my insurance is very slow. EXTREME FRUSTATION! The breast surgeon is pretty sure it will be benign but there is a possibility it is Sarc. My gynecologist is knowledgeable of Sarc so she wants to know that also.

Thanks for the advice about the MRI. I think I might persue that. I have been reading some of the articles about that also. I wonder if the needle biopsy comes back ok if I should insist on an MRI anyway. Any advice on that?

I am going to print out your post and show it to my doctors. Thank you so much.
Sylvia

By ncwoolgatherer
Posted August 30, 2008 at 10:58 am

Did any of you have a digital mammogram? They are supposed to be much more accurate than the older method (sorry, I can't remember what it's called). Also, the results are immediate b/c they are viewed on computer.

Best of luck. Keep us posted.

By Cloudnine
Posted August 30, 2008 at 4:08 pm

I had a digital mammogram and I could see some of the images during the mammogram. That is how they were able to tell me they wanted an ultrasound in like 15 minutes after the doctor looked at the scans. They left me in the little robe top and told me to wait in the mammogram waiting room and then they told me the doctor would like ultrasound images as well.

By Dawn1973
Posted August 30, 2008 at 11:21 pm

Hello Snoopy

I had a galium scan that showed what they believe to be sarc in my breasts. It is too deep to feel doing self exams. I say believe to be sarc because 1. I have so much sarc everyplace else including lungs, lymph nodes(chest, under arms and groin), liver, possible neurosarc on my T5 vertibrae, and possibly in my sinuses and nasal passages. and 2. a galium scan cannot differentiate between sarc and cancer, they both glow like christmas lights so the docs just assume that because I have sarc everyplace else....

My rheumatologist told me that with my next Gyn exam, I should request a Mamogram even though I am only 35. She says that because of the lumps detected in the galium scan, my insurance will cover the mamogram and it is better to be safe than sorry!

I would say do what ever you need to do to make sure that it is sarc and not cancer!!! Thankfully Quinda went ahead and had hers biopsied rather than believing hers was just sarc and found out in time that it was cancer. Now because of her quick action we will have Quinda with us for a long time to come!!! Lets keep you with us too!!!! Get it checked further, sweetie!!!!

Be well

Dawn

By Snoopy2
Posted August 30, 2008 at 11:56 pm

Thank you all for your wonderful thoughts, ideas and inspiration. I realize that the fear of not knowing for certain will drive me crazy. I don't intend to wait long to get the biopsy done - I do have a follow up with my Pulmonary doctor to review the results and she's in the same office as a surgeon who probably can give me a better idea what the surgical biopsy would be like as opposed to the needle biopsy. Either way, I will get it done...another biopsy augh. I just healed from the other but this apparently is the cross I have been given to bear at this time. I will keep the string of responses open and let you all know how it goes.

Positive thoughts to all......Lynette

By CatCamp
Posted September 2, 2008 at 11:18 am

Definitely request the breast MRI. My doctor told me that it is very effective because the granulomatous lesions look different from cancers on MRI, whereas on mamogram they often look the same. Also, try to stick with the core needle biopsy. If the first one is inconclusive, ask them to try again before proceding to an open surgical biopsy. I haven't been diagnosed with sarcoid (clear lung xray, normal ACE) but I do have granulomatous lesions in both breasts. Currently, my diagnosis is Idiopathic Granulomatous Mastitis. I discovered it after finding a lump in one breast. When the core needle biopsy was benign, but "inconclusive", I followed my doctors' advice to have a surgical biopsy. That's when the trouble started. 6 weeks after surgery, the incision opened up into a large open wound. This wound has gotten larger and smaller, but still hasn't healed 2 years later. Apparently, the trauma of surgery agitates the immune system and causes it to attack the breast tissue more aggressively, preventing healing. This year, when they found a similar lesion in my left breast, I agreed to a core needly biopsy. I was very nervous because the area was close to the surface and the bruising took a long time to heal, but I'm now healed. This time, they were able to tell that it's the same condition as in my right breast and didn't suggest surgery, but I would consider very carefully before having biopsy surgery again.

By Snoopy2
Posted September 2, 2008 at 9:28 pm

CatCamp
Curious...were your areas of concern easily accessible and how quickly did you learn the results? The main area they want to look at is really deep, near the wall between the breast and the chest and its said that if they fill me with local anesthetic the ability to get the right area is more difficult because of the depth and that the triangulation could change with the fluid so that's what's making me think the surgical is more certain...? Your comments are very much appreciated.

By CatCamp
Posted September 3, 2008 at 6:09 pm

Surgical is definitely more certain because they can take a much larger tissue sample. I think mine were both pretty easy to access. The first one was about an inch below the surface, I think. The second one in the other breast was/is very close to the surface. The results from needle core biopsies were very quick - only a few days each time. The results from my first surgical biopsy took longer. When the initial result was still benign (the doctors were completely expecting it to be invasive breast cancer), they sent the results to an expert at another hospital (Vanderbilt, I think) for a second opinion. I think it took about 10 days all together.

By RuthfromOz
Posted September 3, 2008 at 8:00 pm

Thank heaven I've found this thread. Great timing girls! I'm just going through the investigation phase after pain in my breasts (initially in the left, now mostly on the right). As soon as that started I trotted myself off for a mammogram - in Australia there is free/government funded breast screening for women over 40, the downside is they only report whether there's anything that looks cancerous. Mine came back clear, but because I had pain and could feel some lumpiness they advised seeing my GP for further testing. My GP was able to feel lumps like ridges in each breast, hard up against the chest wall, almost like one single rib on each side is twice the size of the rest. So next step is ultrasound, with fine-needle biopsy if they can see anything. She doesn't think it's sarc, but then she thinks sarc is an old person's disease & that 35 was very young to be diagnosed, so I'm not putting a lot of faith in her thoughts on this one.

By Squeeze
Posted September 14, 2008 at 2:01 pm

It's me again (smile) ...
I was diagnosed with breast cancer 12/98. I also had the needle biopsy, lumpectomy, chemo & radiation -- the whole routine. I can't say the cancer was related to the sarcoid because my family has a cancer history. I have wondered though if all those x-rays I took increased my chances of breast cancer. As far as sarcoid is concerned as soon as I started taking prednisone, I gained weight. But I started walking. Although a turtle could walk longer and faster I feel it stregnthened my lungs. My sarcoid was in the right lung, breast cancer in the right breast. Keep me posted and I'll do the same. Stay positive and keep digging for info.
Squeeze

By Snoopy2
Posted September 15, 2008 at 8:04 pm

Hi everyone, it's me just keeping you up to date on the latest. I went to my pulm. doctor and she was kind enough to work through a few things with me that helped me decide how to proceed.
1. Breast MRI's (as per the radiologist, they cannot detect cancerous tissue over calcified)
2. My doctor got the radiologist on speaker phone (unbenown to him) and he reviewed the xrays, ultrasound, digitals and provided another opinion. He said that from what he could see he didnt think the tissue looked cancerous but often these tests are done more to confirm, especially when the tissue in question is as deep on the chest wall as mine is.
He further confirmed that even if they opened me up and took the sample and found that the sample was cancerous then I would need to be reopened again to remove the problem, so why be cut open twice possibly?
Long and short of it is I am going in for a local core needle biopsy and I'm very nervous about it...sitting still for two hours and awake does NOT make me comfortable. But I've made the appointment for October 1st. I'll of course update everyone when I know the results, your prayers and continued support are truly appreciated.
Thank you all..God Bless

By quinda
Posted September 16, 2008 at 11:13 am

I am the girl with breast cancer and had the lumpectomy, mastectomy and now on to chemo all this summer. I had the core needle biopsey at the surgeon's office and I never felt a thing. Just lay back, they will certainly give some shots to the area so you will not feel a thing. Lay back and let them do all the work. It will be so worth it to know if you are facing cancer or not and if you are you can do this. I am doing it and I am doing it well. Well, sometimes not so well. What one man can do another can do. Keep us posted we will be waiting, praying and hugging you as you go through this most tedious time in your life.

By sarcoidbuddies
Posted September 16, 2008 at 5:55 pm

hi i would say also to persue it until your doctors know whats going on. in 2004 i had a lumpectomy and it came out with 3 cysts and sarcoid in the breast then in 2006 i had to have a biopsy and it also came back as sarcoid so trust you instincts it's your body.

By pamk
Posted September 17, 2008 at 8:19 am

I have always had very fibrous breasts and noticed some lumps that I didn't remember feeling before. I am going to see my gyn on Monday. I get a yearly mamogram and had one about 6 months ago that said all was fine. My grandmother had breast cancer when she was 58 with a lumpectomy and radiation. I am now 56. I have sarc in my lungs, in my eyes as well as subcutaneous. After reading this discussion I have more info to help me ask better questions with the dr. I wish all of you the best and appreciate all of you sharing your stories.

By julzcoop
Posted September 17, 2008 at 3:10 pm

Hi All,

I'm a little off topic here, but have something important to share in this thread. Did you know that there is a website whose sponsors give funds for free mammograms to needy women? All you have to do is go to the site and click on the pink sign that says: "Click here to give- it's free." You can even sign up to get a reminder e-mail everyday to go and click. I signed up for the reminder and it literally takes 10 seconds out of my day to pull up the site and click. Here's the site: http://www.thebreastcancersite.com/clickToGive/home.faces?siteId=2&ThirdPar tyClicks=ERB_091708_BCS

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