Help- Mom thinks I'm crazy?
Hi all -
I know many of you are going through the same things that I am. I feel alternately paranoid and dismissive of the situation. I'm tired of being worried and sometimes want to just ignore my symptoms even though I know it is potentially dangerous. I am very high risk due to family history (mom) and other factors. I keep getting lumps and biopsies. Mom was very supportive and came up for my last surgery which was a large lump open excision. However, once I got a benign (pre-cancerous) result, she seems to think that I should just ignore the two lumps in my other breast and the fact that the previous diagnosis (fibroadenoma) did not match the birads 4 US. These things concern me and concerned a path friend of mine as well. The surgeon was going to try to get out any additional tissue by the clip with the excision but was unsuccessful and only took a large portion of the other lump. Now I feel like it's my duty to myself and my children and husband to follow up with a second opinion on that first questionable lump and the other two. My Mom says if I keep shopping doctors that someone will tell me what I want to hear. This made me mad! I asked her what exactly she thought I wanted to hear because all I want to hear is that I'm fine. Now, given, I don't want to someone to just pat me on the head and tell me I'm fine - I would like evidence that I'm fine. I would love it if they do the US and say -oh, don't worry, it's just simple cysts. I really don't want more surgery. The main problem for me is that the tests aren't really helpful due to density and I would like some reassurance without surgery. I don't know if it's possible. Am I just being paranoid?
Comments
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Hi - I don't think a 2nd opinion is out of the question.. and I know that you mentioned tests don't help but have you had a breast MRI - this test is very helpful with early cancers or as you say pre cancers? That could help you understand if there are other area's of concern within both breast - or better what those area's of "undiagnosed lumps" might be. I know it's hair raising for a mother (you) who has small children to just "sit" with "watchful waiting", but a second opinion on the biopsy that has been done is a good idea to settle your mind. If you decide to have a second opinion on the tissue it's really easy - just ask your breast sugeon to send it (the tissue samples at the pathology lab that did your biopsy) out to any one of the breast cancer specilty hospitals in the country (I choose Vanderbilt but there are quite a few others so do your own research and see which one "feels" right to you). I was able to get my insurance company to pick up the charge of the second opinion which was only $350.. but that amount can be huge if you are in this economic mess - If you got a benign reading from a breast cancer specilty center it could put your mind at rest. Good Luck and let us know what you decide! Best
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Hi floridian,
I don't think that you should ignore the other two lumps. Yes, they could be benign, and hopefully they will be, but on the slim chance they are not, then they needed to be treated as soon as possible. If you had a pre-cancerous condition then a second opinion would be great just as Deidre1 said. I, personally, got second and third opinions, and then got them taken out - thankfully benign. However, I don't want to take chances because my sister died of ovarian/uterine cancer when the doctor's thought it was just an infection. So, I choose/chose the pro-active route because of my family history. Do what is best for you, unfortunately, even if your mom may not necessarily agree. Wishing you the best.
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Thank you - I do feel I am being paranoid at times but I read here about others who have had the same exact situation and the dense tissue is hiding something. I have had an MRI but it was before this latest round of lumps. I read somewhere that MRIs only show cancer once it is vascularized - I think that means advanced?- and my report says that dense tissue may hide DCIS on the MRI. Also, does parenchymal enhancement mean anything? Apparently it's benign - I'm guessing fibrocystic? My Gyn did order US but I haven't done it yet. It would just be for the lumps - I was told that they don't really do "screening" US as it would take all day to thoroughly examine all the tissue.
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Floridian: My MRI showed DCIS at a very small size and it had not vascularized - I had no idea I had cancer (no lumps no leaking nothing) and I had just had a mammo that was clear.. when the results of my MRI came back with a 'area of concern" my bs didn't believe it and so did a digital mammo, and a sonogram neither showed anything.. Only the MRI clearly showed one area of conern and that was biopsed and it was indeed DCIS and the rest of my breast tissue was clear on both sides on final pathology.. I believe there is some misconception with breast MRI from an earlier time, but some of the kinks have been worked out and it's easier now to get a good reading.. Good luck!!
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Hi Floridian --
Definitely get those lumps checked out! It's good biology and it's better psychology. It's your body and your life - and your decision!
I had the opposite situation from Dierdre's -- 2 MRIs, a yr apart, were both clear, but a digital mammo 1 year after lumpectomy and rads showed a lot of ADH (nothing new, apparently - just stuff that neither the earlier film mammo nor 2 MRIs had shown.). My local onc thought another biopsy would be enough, without excising all of the ADH, but i got a 2nd opinion at Mayo. They thought that a mastectomy was sensible at that point -- my view too; i needed to be sure there was no DCIS in there. (There wasn't - so i had a mastectomy to prove i didn't need one. Weird.)
Your mother wants everything to be OK (can't blame her!) but you need to be sure it is. Try to get to a major med ctr or teaching hospital if you can - in any case, not to the MD next door who golfs with your 1st opinion...
And probably it will be benign and your mother can say she told you so. But you'll sleep better! Good luck.
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Thanks Deirdre -
I imagine it also depends on who is reading it (maybe that's why the warning for DCIS - maybe it's hard to detect). The path reports from two MRIs I had were completely different. They couldn't see the lumps that I had at the time on either MRI. I'm not sure what that means or what constitutes an area of concern. I'm familiar with how to read US and a little with mammo but not at all with MRI.
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Floridian,Its probably nothing but..... I had very dense breast tissue in both breasts and 6 years ago was told the mammo was ok but to keep getting checked every couple of years due to dense breast tissue. I went back two years after that and both breasts had invasive Lobular Carcinoma,,, which had mimiced the breast tissue and had made the doctor think it was just normal tissue. I sat with this cancer for two years and by then it had traveled to my lymph nodes on both sides. I had a bilateral masectomy with reconstruction,, chemo,, radiation and armidex for 4 years.. then recently the cancer has returned to my bones. I'm not trying to scare you but I was in the same situation and if I had pushed them initially to check me further then the cancer may not have traveled so far and today I wouldn't be making end of life decisions. Its no time to just take someones word for things. Doctors make mistakes too. My tissue was so dense the mammo would barely see through and had to have an ultrasound and then many biopsies of the whole two breasts to check suspisious areas. Please please,, never think your being paranoid. Its your body,, its your life. Do whats best for you. Ask for an MRI because thats about the only thing that would have found my type of cancer.
Good luck to you
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Thanks Lynn -
I am so sorry that you are now in that situation. Thank you for telling me your story. I keep trying to tell myself that it is nothing but there have been rapid changes that make me nervous. My mammos are useless. Honestly I hate MRIs but maybe I will go that route if they keep growing and the US doesn't give answers.
(((hugs)))
Kim
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Hi Mouser -
How did you get a digital mammo? I think the place that I am going says it is read digitally?
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Hi, Please DO NOT IGNORE any lumps , bumps or anything that gives you worry. I would highly recommend a Breast MRI. I had an MRI done and mammo on the same day. Mammo came back clean and MRI picked up 2 areas of IDC. So please Be PROACTIVE!!! I am quite shocked that a mother would say the things that she did! Did you MOM have BC? If she did how can she act that way? Think only of your health. Good Luck, Gentle Hugs, Jeanie
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Still working on this..... Mom actually asked how things were going? Maybe she's bipolar or denial? I did get the digital mammo, US bilateral tomorrow and US ovaries too. Hoping they have answers but only if it's good news!
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