New:My story and area of concern:please help
I am new and wanted to share what is happening as I am VERY concerned. For the last 6 months or so I have had widespread pain/symptoms that I did not attribute to my breasts at all. In fact, my concerns were more for that of other gyn cancer or endometriosis. My grandmother passed away from ovarian cancer and my mother had cervical so it has always been a fear of mine. In 2013 I had a TVH, and left only one ovary behind b/c of endometriosis and adenomyosis. Even though I had that surgery I have had increasing pelvic, vaginal, abdominal, bowel, bladder and thoracic pain. I had a pelvic U/S which only showed a simple cyst on my remaining ovary, and later a pelvic MRI which showed a lesion on my vaginal cuff (that could *possibly* be endometriosis). So I began to suspect the endometriosis was spreading and I have an upcoming appoinment with a specialist to see if that is what is going on. While I've been waiting for this appointment my thoracic symptoms have gotten worse. I feel pressure and heaviness in my chest and get pinching, stinging pains in my armpits or in my breasts. My upper back is sore and I sometimes feel pressure and swelling in my neck (thyroid tests were normal. My breasts have been very itchy lately and sometimes feel like they are leaking although there has never been any discharge when I check. The area that is itchy has developed a few bumps that look like bug bites, although I haven't been bitten and have not changed products or soaps. There is also a mole there that has seemed irritated as well, like it is "flaring up." I have also had some unexplained bruising on my breasts with no injuies or explanation. I have never been able to perform self breast exams because my breasts are very lumpy. I had a baseline mammogram when I was young and they even told me then that my breasts were very dense and difficult to visualize. Years ago I also had an ultrasound guided cone biopsy that turned out to be B9. A fibroadenoma, they said. A few days ago I found a lump by chance when I was in the shower. I saw my doc the next day and she felt it and said it felt firm, round and approx 4mm. this area is high up on my right breast @ 2:00. There was another area on the inner aspect (4 or 5:00?) that was tender and felt like a cluster of squishy? lumps. My doc ordered an ultrasound and I went for that but they couldn't see the lump the doc and I felt. The radiologist recommended a diagnostic mammogram and told me that U/S could sometimes show if there was a cyst, but wasn't always great at finding everything. I went for the mammo and they ended up taking some extra "spot" pictures of this area of concern, but when the radiologist came out she said everything looked "fine" and to just follow up with my doc and "watch it." I'm guessing there must be something showing there if they took extra spot pics and if nothing showed up there wouldn't be anything to "watch." I proceeded to tell her that I am concerned about all my symptoms and that I'd feel more comfortable with a breast MRI, just in case. I also recently just found out family HX I didn't know I had. My grandmother's sister had a double masectomy and her other sister had a son who had breast cancer. She scoffed at my symptoms and told me I had nothing to worry about that they didn't "match cancer", but that's not what I've been reading from people on here. Some don't even have symptoms. It seems there is no "one size fits all" scenario. Can anyone relate to my story? Am I overthinking? Should I push for MRI or biopsy? My insurance doesn't cover BRCA testing unless I personally have a diagnosis, but given this newfound family history, should I pay out of pocket? I have an appointment with my PCP tomorrow, but after what the radiologist said to me I don't know if she'll take me seriously or order any additional tests.
Comments
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Also, not sure if it is relevant or not, but I am 41. I was on BCPs to help control my awful periods from the time I was 16 until 38, which was when I had my hyst. I was only off of them when I was pregnant) I have not been on any hormones since my hyst, since I still have 1 ovary. I feel like there is a good chance that if there is a genetic component here that I would have inherited it from my grandmother as I take after her in every other way. People always wonder why I don't look like my parents and I tell them I skipped a generation and took after my nana instead. I'm a spitting image of her. I wish my mom had told me sooner about our risk, but she's not exactly proactive in her own health. She'd rather not know anything and doesn't get checked. I respect her decision, but it's not for me. I'd rather know, and know early for the best possible chances. Now I am terrified because I'm wondering if I should have had frequent monitoring, knowing that I had very dense breasts and couldn't realistically self exam.
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With your grandmother's history of ovarian cancer and her sister and nephew having breast cancer, I really think you have a case for genetic screening. And not just the BRCA genes. There are other more rare genes, some of which have pretty high risks, like PALB2 and Chek2.
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Thank you for responding mustlovepoodles. I had never heard of those other genes. I honestly don't even know what to do right now. I will mention my new-found risk factors and my desires to be tested to my doctor but I don't know what will come of it. My insurance doesn't want to cover breast MRI or genetic testing unless I already am diagnosed. It is so confusing and frustrating. I'm trying to stay positive but I feel in my gut something is very wrong and I just want to get to the bottom of it.
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All the generalized pain, along with sharp pain could be a sign of thyroid disease; perhaps low vitamin D too. Both are extremely common, especially in 40 yo women. Have you ever had thyroid hormone levels and vit D level checked?
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Hi DATNY. Yes, my thyroid levels were checked and found to be normal. I have had low vit D and have been on replacement, but have had these symptoms worsen even with now normal vit D levels. I also have multiple sclerosis as well, but these symptoms aren't typical of that.
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moondreaming- I’d see about getting a copy of the radiology reports for both ultrasound and mammogram. You can post what they say here and DJMammo and/or some of the ladies on here may be able to help you wade through it. Also, you can ask for a referral to a breast surgeon for a consult. He/she may order a biopsy or excision both of which would likely ease your mind.
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Hello moon dreaming! I’m definitely on the “talk to your pcp” bandwagon, but o would make a list of everything you want to talk about. I have a biopsy coming up tomorrow and of course I’m worried, as is normal. One thing you mentioned that I would mention to your pcp is the pressure in your neck. I had a similar issue and was diagnosed by an ent with silent reflux which could cause swelling in the neck and the feeling of your neck being lightly squeezed. Of course, when I found out I needed a biopsy, I started worrying that I was dealing with something bigger than what it might be, and that the ent might be wrong, but now that time has gone by, I’ve calmed down and think that the silent reflux is just that. anyway, what I’m saying is that you should write down everything and go with your list to your pcp. I’ll be thinking of you
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moondreaming, I am sorry you are dealing with so many health issues. I have autoimmune thyroid disease, and I used to get a lot of symptoms that overlap with what you describe. Pain everywhere, dull pain and sharp pain. I had skin infections too, likely due to the poorly functioning immune system. During this time of pain, my hormones were in the normal range, but my antibodies to thyroid proteins were high. This, and a slight elevation (just above the normal) in some inflamatory markers were the only measurable clinical signs of my widespread symptoms.
Looking back, I think it was my body reacting to the breast cancer and not knowing what to do. So you are right to pursue investigations for both type of cancers. It is very likely something is going on. It could be that your body will be able to keep it in check at the expense of your quality of life. If not, at least your quality of life will improve after treatment, should the cancer be cured. There is now research supporting the idea that autoimmune diseases are caused by incipient cancer.
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The reports just became available on my patient portal. Looks like neither test found the lump that is palpable. I want to believe this is a good sign but unfortunately I know of too many cases where it was later found on MRI or biopsy to be cancer. I also know even small lumps can be aggressive. I think for my own peace of mind I have to pursue this. I am more worried about leaving it be and having a possible cancer grow than if I were to find out right now. I will post my U/S results and Mammogram notes, but as I said, neither one found the lump. However, as I already knew (and why I wanted MRI in the first place) my breasts are EXTREMELY dense. I really hope my doctor will order it and that my insurance will cover it now that I've done the other standard testing.
U/S:
HX: UNSPECIFIEDLUM IN RT BREAST UIQ CLINICAL INDICATION: 41-year-old female with right breast lump FINDINGS: Sonographic evaluation in the areas of palpable concern at 2:00 and 4:00 in the right breast as directed by the patient was performed. No discrete solid or cystic mass is seen by ultrasound. The patient has not had prior mammography. Diagnostic mammography is recommended at this time. IMPRESSION: No solid or cystic mass seen to account for the areas of palpable concern in the right breast. Given that the patient has not had prior mammography, diagnostic mammography is recommended at this time.
Mammo:
HX: LUMP IN RT BREAST UPPER INNER QUADRANT This study was interpreted with computer aided detection software iCAD version 8.1 INDICATION: Right breast lump COMPARISON: Baseline mammogram TECHNIQUE: MLO and CC views of both breasts.Coned compression of the right breast in MLO projection and exaggerated axillary cc view of the right breast BREAST COMPOSITION: The breasts are extremely dense, which lowers the sensitivity of mammography. FINDINGS: There are no suspicious masses or calcifications, and no increasing asymmetries or architectural distortion. There is no correlate to the palpable finding in the upper inner right breast. IMPRESSION: No mammographic evidence of malignancy. RECOMMENDATION: Annual screening mammography. The palpable mass should be managed on its clinical merits since there is a false-negative rate with imaging. BI-RADS: 1 Negative
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Hi moondreaming. Sorry you are having so many health problems, and I think you are right to be proactive. I wanted to chime in here to ask if you have considered paying out of pocket for genetic testing? Last year I was diagnosed with LCIS but the surgeon did not think I needed genetic testing due to no family history of breast cancer. However, my family has had a ton of other cancers, including prostate cancer in a sibling which can be a risk factor for ILC, so I was slightly uneasy. I was also trying to decide on my options regarding preventative anti-hormonal therapy or prophylactic surgery or just increased surveillance. My thinking was that the genetic testing results would be another data point for making my decision so I chose to pay for my own testing at Color Genomics. Their hereditary cancer test looks for mutations on 30 genes that are known to be associated with various cancers, including some for breast and ovarian cancer, for $249. These are the genes that they look at:
APC, ATM, BAP1, BARD1, BMPR1A, BRCA1, BRCA2, BRIP1, CDH1, CDK4*, CDKN2A(p14ARF), CDKN2A(p16INK4a), CHEK2, EPCAM*, GREM1*, MITF*, MLH1, MSH2, MSH6, MUTYH, NBN, PALB2, PMS2*, POLD1*, POLE*, PTEN, RAD51C, RAD51D, SMAD4, STK11, TP53 (Those marked with an asterisk are only analyzed at specific locations.)
This test is performed under a physicians supervision. Your own dr can order it and receive the results, or you can have it done under the direction of Color's physician as I did. You will receive the results and can have a copy sent to any doctors you choose. The price for the test includes a telephone conference with one of Color's genetic counselors, to help you understand your test results. This is not an endorsement of Color Genomics, but I just wanted you to know that there are some relatively affordable alternatives out there for genetic testing, and Color is the one I am familiar with. How reliable are they? I would take any genetic testing with a grain of salt, because there is a lot we don't know. But if you show any known mutations on this testing, you could bring it to your dr's attention to ask for confirmation thru their more extensive/expensive testing and perhaps your insurance would pay for it. Anyway, just a thought.
I wish you all the best.
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Thank you everyone for the input. Today was exhausting, but luckily my doctor was very supportive and agreed I should see a breast surgeon. I'm glad we will soon know for sure what this lump is. I still want an MRI in the hopes to fully evaluate both breasts and make sure nothing else is "lurking in there" but will cross that bridge later. I also like your suggestion about color genomics, light1candle, and would really like to do this but unfortunately it will be some time before I could afford it.
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moondreamng- when you see the breast surgeon ask for contact informatio for the local breast/cancer center's genetic testing counselor. There is at least 1 company that offers the testing for $60 if your insurance does not cover it. Thought I'd throw that out there.
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I had my genetic testing through Ambry, which my insurance paid for because I had been diagnosed with IDC and my family history is heavy with BC (and many other cancers). When mine came back positive for two rare gene mutations, my adult kids wanted to be tested. Neither of them had insurance at the time. I had each of them write a letter to Ambry asking for financial assistance to pay for the testing. Ambry covered the whole cost. Good thing, too--my 25yo DD was also positive for both gene mutations!
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Some people with extremely dense breasts, opt for a breast reduction. I believe that insurance companies have to pay for breast reductions, when density is the issue. I know someone who just took a a pound of density off of each breast and is so happy. Good luck.
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Some people with extremely dense breasts, opt for a breast reduction. I believe that insurance companies have to pay for breast reductions, when density is the issue. I know someone who just took a a pound of density off of each breast and is so happy. Good luck.
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@lula73 good advice! I will ask to put in touch with a genetic testing counselor.
@mustlovepoodles: I am disabled from MS and have Medicare & Medicaid which complicates matters. I'm not sure if it the case with all genetic testing, but I looked into myriad and they did not offer financial assistance to those who have my insurance. I will look into the one you suggested though, or maybe speaking to a counselor as Lula suggested will point me in the right direction.
@Michelle_in_cornland: I understand your suggestion and the reasoning behind it. It could make detection a lot easier and also be a prophylactic solution. However, my breasts are actually small and dense. I believe in order to remove the density it would remove my entire breast and I would not want to do that unless it is found that my lump is indeed cancerous. I noticed you deleted a comment. May I ask why? I hope it wasn't because you second guessed a comment.
Thank you, everyone. I truly appreciate everyone who has taken the time to read my story and help see me through this difficult time. I got my appoinment for the breast surgeon. It is May 21. Seems so long! I will be anxiously awaiting that date, but will update everyone.
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Moondreaming, I would definietly suggest talkign with a genetics counselor. Mine was instrumental in getting my kids' testing done and paid for.
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Hi again, everyone. Here is my update. I went to the breast surgeon and she examined me and performed another ultrasound as well. She found the lump and marked an "x" on my breast with permanent marker. I noticed it was not on the spot where I was feeling the lump, but didn't think too much into it because I figured it was positional, and that she had marked it when I was laying down. (Normally when I felt the lump I was standing in the shower or sitting.)
She told me it was 1.5 cm and looked good because it had rounded borders. She said it was likely benign and that she recommended checking it again in 6 months, and that if anything changed between now and then, she could surgically remove it. I asked her for a breast MRI and she said she'd order it. Well, I went home that night a bit unsettled. She was wonderful and I liked her, but I was not comfortable waiting 6 months on this, whether the lump "looked benign" or not. There was also that matter of where she drew the "x." So I examined the mark myself, and sure enough I felt a lump there. It felt "tough" but not as hard as the other lump I was feeling. So it was definitely not the same lump. I felt around more and sure enough, I felt the other lump (which feels like a hard BB) further up. So there are definitely 2 distinct lumps. I called the office back the next day and told the nurse what happened and that I'd thought it over, and I wasn't comfortable waiting 6 months. She told me my MRI was approved, so now I'm just waiting for scheduling. I'm somewhat relieved, because even though I've felt the lumps in my right breast, I have been concerned about symptoms in my left also, so this should tell me if anything is going on in that one too. At least I'm hoping the MRI is sensitive enough. I'll update when I have it and what I find out. Please keep me in your thoughts.
oh, yeah, and I forgot to ask her about a genetic counselor. We talked a bit about genetic testing because she said my history as concerning and that I SHOULD be tested, but insurance is a nightmare. I got the impression I didn't have any options in that area.
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Good for you, advocating for your health like that. *high five* MRI is highly sensitive, so hopefully it will answer the questions that remain.
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Good for you for being proac
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Very glad to hear you are off to an MRI. Just remember, each test is used WITH the next one. One test when there is a concern needs to be comparied to the next one. Example...my first mammo found 3 lumps...one turned out to be malignant. I refused to see a sergen until I knew they will give me an MRI. I was referred to one that got me set up to have an MRI before I was even seen. The MRI found 2 more lumps....both were malignant. Now....the largest tumor was found on the MRI!!!! Go figure. lol The ultrasounds confirmed and was part of the "team".
I guess what I am saying....be assertive--get checked out. But if ALL the tests say "come back in 6 months"...then have peace. Stay on it, but don't let it rule your life.
Keep us updated!
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Update: I accessed my Breast MRI report on the portal and again I am confused, as the lump does not show on there either. I should be very happy this scan was clean, but I would have felt better if the lump showed up and looked benign, as opposed to not showing up at all. After all, my breast surgeon found it on her ultrasound! Why is it hiding on the MRI? Is it because it says my breasts are heterogenously dense and there is moderate background enhancement? The radiologist recommended yearly screening for malignancy and that 3D mammogram was warranted. I was given a Birads 2. I still have to follow up with the surgeon and see what her recommendations are, but I expect she will just want to recheck in 6 months. She told me that if it got bigger she would definitely remove it no matter what. I am just bumed as I was hoping for more answers, not more questions...
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that is frustrating! I would agree, going forward only get 3D mammo. It saved my life...my cancer would not have been seen had I had a 2d.
Can you go back and get 3D now
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