Member of the "6 Month Watchful Waiting Club", Unite!
Comments
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Forgive me, I'm new to all this and maybe misinformed.
I thought a diagnosis of DCIS could only be done with biopsy and pathology.
Confused on how 1 Dr. Said yes and the other said no.0 -
I thought so too.
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Sorry the long story here is I had an excisional biospy back in Feb. This was at St. Lukes hospital in NYC. The path report showed DCIS with their recommendation of Tamox and 6wks radiation. I went to Sloan Kettering for a 2nd opinion. They reviewed the slides from the biopsy and found no indication of DCIS or even atypical cells. The Drs at Sloan basically said even if they were in agreement with St. Lukes findings the course of treatment would have been watch and see rather then radiation and pills. The area of supposed DCIS was very small.
So I'm being monitored at Sloan and last week was my first follow up. I'm also confused about "enhancements" found in the MRI. Are enhancements lumps that have increased in size from a previous MRI.
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Tanwhite, I will pray that your biopsy goes well and all this turns out to be b9.
Just a bit curious though as to why a Dr. Would wait and see with DCIS. (IF they had agreed on it)
Why not treat it instead of running the risk of it becoming IDC?
Please don't read anything into my questions, I'm just thinking out loud and preparing myself for for my own future as well.
Best of luck and please keep us updated!0 -
Check the "Waiting for test results" forum. There is a thread on MRI test questions. This may help.
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Kelly, she said the second opinion said it wasn't DCIS.
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Melissa, please excuse me if I said something that upset you.
Tanwhite,
As I said, I'm just asking questions to try to be better prepared for what ever comes my way in October and beyond.
Some of my fears are not so much the possibility of cancer, as I know the amazing survival rates.
Mine are the 6 months, 6 months, 6 months..... which my sister has been dealing with. Or like my mother, having a doc miss the mass on biopsy, call it clear and have a mastectomy 8 months later.
I am getting married in less then a year a fear having my children, step children and grandson seeing me as I seen my mother, bald, sick, pale, lifeless and depressed for what seemed like forever.
I'm sorry for asking earlier. I went to some of your original posts and read why there would've been a difference in treatment. I was unaware that tamox would affect reproduction.
I guess I have more reading to do before I ask questions.0 -
Kelly,
I'm with you. I am 50. I have 4 kids. My youngest is 12. My kids have seen me bounce from biopsy to biopsy, and clinic to clinic. Whether it's my breasts or other reproductive organs. I as also have Sjogren' s syndrome, Fibromyalgia, and I don't confess the RA a rheumatologist diagnosed me with in Feb. I have tried to keep things quiet but especially with AI stuff it's hard...I hear, "You are always sick" Way too much.0 -
momcat
I am the proud mother of 2, step mom of 4 and then there's my heart, my beautiful grandson! In the last year I have had my L4-L5 disk removed, down for 4 months. 2 ultrasounds, biopsy and ablation for tumors in uterus. And now this. I am tired of doctors. Now I know why when my dad got diagnosed with colon cancer, he said "let it be ".
He passed a grueling 7 months later. I remember thinking how hard it was to watch knowing I had no power over the evil that had taken over him.
So no matter how much I hate doctors, I will fight. I will show my kids that we have the power to win.
Sorry, I'm just rambling.
I will keep you in my thoughts and pray that everyday you find a little more fight to get you threw those bad days.0 -
Kelly, we are alike in some ways! I'm sorry about your father. My dad passed 4 months after a lung cancer diagnosis. I, too, had an endometrial ablation. I have many fibroids in my uterus, with cysts on my cervix, cervical dysplasia. My repro organs are worthless now. LOL The ablation didn't do anything for the tumors, of course.
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We are both a hot mess!!! LOL.
I am so thankful that I finally decided to join here instead of just lurking about and reading all the time.
I must admit, this site has become my new addiction. Who needs fb?0 -
Hi Kelly,
No worries and please don't apologize. I have a ton of questions myself. Thanks for your well wishes and good luck.
Tanya
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110 praying that you will get the big B9......hang in there. Let us know what you find out.
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Domesticwomen, you can start a Fibrocystic Breasts thread anytime you'd like....someone here did for us ADHers. I, too, have Fibro breasts.
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Momcat1962, it would be much better if you start one and i'll join in and have it as a favorite topic. I'm not computer savey and wouldn't even know where to begin.
I do think there's a need for such a board, because the issue of fibrocystic breast ...causes much concern for soooo many women.0 -
I have extremely fibrocystic breasts - until menopause, I experienced a lot of pain and swelling prior to my period, and I have a lot of natural 'lumps' that are just the normal landscape of my breast, many of which would become larger and more prominent before my period. Over the years I've also had more cysts than I can remember. When I was diagnosed with breast cancer (totally unrelated to my fibrocystic breast condition), my pathology report read like a laundry list of almost every possible fibrocystic breast condition (in addition to the cancer). I had my first biopsy at 16 (for a fibroadenoma) and my most recent call-back and 6 month follow-ups were just over this past year. So I've been dealing with this for 40 years. For me, this is just how my breasts are - it's normal to me.
While my case is extreme, the fact is that about 60% of women have fibrocystic breasts. Many women who come here very concerned about breast cancer end up being told that they have fibrocystic breasts. Those who have fibrocystic breasts need to be more careful with their screenings and more aware of the 'landscape' of their breasts so that they can distinguish between normal fibrocystic lumpiness and pain and swelling, vs. conditions that might be more serious. And if something new develops and it doesn't go away after one or two menstrual cycles (I always waited two - and most of the time, the lump would go away or shrink by the time I got through my second period), it needs to be checked out. Those are important things that women with fibrocystic breasts need to understand. So it would be helpful to have a thread about fibrocystic breast condition. However I don't think it's appropriate to have this thread in the "High Risk for Breast Cancer" forum because it will lead women who have this condition to believe that they are higher risk to develop breast cancer. For most women who have fibrocystic breasts, that's absolutely not the case. Maybe the "Not Diagnosed" forum would be a better place. And if a thread about Fibrocystic Breast Condition is started, what will be most important is ensuring that the information is accurate and doesn't lead to unnecessary fears.
By the way, as I've said on this board before, I think that having fibrocystic breasts turned out to be a good thing for me. I've been seeing breast surgeons since I was 16 and I've never been afraid to call the the surgeon for an appointment whenever something new came up. Having the relationship with the surgeon (and now, with the radiologist at my breast cancer center) meant that I trusted when he said I needed to have a biopsy, and I trusted when he said that I didn't need a biopsy. When my calcifications were discovered and when the needle biopsy showed only ADH, the last thing I wanted was to have another excisional biopsy. But I trusted my surgeon so I very reluctantly went ahead with it on his advice. And that's how I was diagnosed. If not for my fibrocystic breasts, I doubt I would have been as diligent about my screenings, and I might not have agreed to the surgical biopsy. So I figure that it's thanks to my fibrocystic breasts that my breast cancer was caught at such an early and treatable stage.
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Donesticwomen,
I don't really have anything to discuss concerning fibrocystic issues right now. It would be a good thread though for members to share their history with FB.0 -
I agree with Beesie, and I would also like to gently point out that this thread is for those of us who have been diagnosed with a high risk condition such as ADH, ALH, LCIS, BRCA +, etc. who are on a continuing schedule of six month checkups, such as rotating MRIs & diagnostic mammos, not just normal "wait & see" rechecks. I kind of feel like this thread is getting highjacked for discussion of things it was not intended for.
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Yes, we need to be careful in these discussions to not start grouping normal breast conditions that might require a bit more care and caution (such a having fibrocystic breasts or pre-menopausal women having dense breasts - which most do) in with what are truly HIGH RISK conditions. If we start doing that, about 80% of women who come to this site - most for what turn out to be benign, harmless conditions - will start thinking that they are high risk to develop breast cancer. That will scare them and that could lead them to think that they are not getting the proper care if they aren't being prescribed anything more than normal screenings - which is really all that most of them need. I don't see how that's helpful either to the women involved (do we want to needlessly scare people?), or to their doctors, or to the medical system (let's increase the wait times for all of us by having 80% of women insist on having diagnostic mammos and MRIs!).
There are two groups I will add to MelissaDallas's list of those who are high risk. First are those women who have previously been diagnosed with breast cancer, particularly if they have other risk factors. I've had breast cancer, I have extremely dense breast tissue (and am post-menopausal), and I have a low level of family history (mother and aunt with breast cancer). So by the numbers (i.e. my risk level to develop BC within the next 5 years) I am 'high risk' and I'm on a continuing schedule of 6 month screenings, alternating between MRIs and mammograms/ultrasounds.
The second group to add are those who have had a BIRADs 3 and are on a 6 month follow-up, and those who've had a BIRADs 4 and have a 6 month follow-up. Many of these women are not actually high risk and after one or two 6 months checks, about 98% of them will get the "Get Out of Jail Free" card and will be able to get back to regular screenings.
Ultimately I think what's most important is that everyone needs to be diligent with their breast health and everyone should ensure that they get the appropriate screenings. But what we need to remember is that "what's appropriate" is not the same for everyone. Not everyone is High Risk and not everyone needs on-going 6 month checks.
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Anyone still checking in on this thread? I have ALH and ADH bilateral and am a member of this club. I found a lot of great information on this thread so I thought I would at least give it a try
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i'm still here. For some reason the "High Risk" thread has been getting more traffic.0 -
I am here.
I go back for the check up in December. 0 -
I'm still around too. Just had my check in Sept. Should have been an MRI but I am now allergic to the contrast, so I get a diagnostic ultrasound. My results were "no change" from the time before. I go for a mammogram in Jan.0 -
i have to have another biopsy November 21st. The other breast this time...0 -
Well, they are certainly not rushing it Melissa, hopefully that is a good sign. What kind of biopsy are you having, surgical or needle?
I had a biopsy on the other side last April, it was apparently a reactive lymph node in my breast, and "nothing to worry about". Although, I think to myself...reactive to what??? Best of luck for a b9 result Melissa! Keep us posted.0 -
yep, I'm still here, too. Just had the annual mammogram (all clear- whew!) and will have an US in April. Sometimes I think this thread should be called "6 month revolving door club". Seems never-ending.0 -
Ultrasound guided core. Originally they thought it could possibly be a complex cyst and were going to try a FNA first and then core if necessary, but on review of my MRI from six months ago now they decided it looks like a more concerning solid mass. I get my care through a large county hospital system and things are very slow, even if it is somewhat urgent, but this got a Birads 4A, so hopefully not a problem. I'm thinking it may come back as more of the same stuff I already know about, since especially the LCIS tends to be diffusely through both breasts.0 -
Melissa, why so far away?
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Because it is the massive only nonprofit that cares for the uninsured and poor in Dallas. They are slammed busy, but I am very grateful for the good care I get from them. Parkland is staffed and supported by UT Southwestern Medical School which also has the only NCI certified cancer center in our area. You realize the time lag is not clinically significant, right? Very rarely would a wait of a month or two make any difference. With my first LCIS diagnosis it took from the first of November until the end of April to go from screening mammogram until excisional biopsy. This is why it just makes me crazy when women on here push people like it is an emergency when the can't get in somewhere for a month and try to tell them to go somewhere else faster, even if their insurance won't cover it. There are women who don't have a choice on where they receive care and for whom paying several thousand dollars out of pocket just because they are scared could be financially ruinous and crippling. I've also seen them push women to go to the emergency room, which is highly inappropriate and also not equipped to deal with breast issues unless it is an infection.
I was gravely, seriously ill with the ovarian cancer and it still took 16 days to get me scheduled for surgery. They just told me to come to the emergency room for paracentesis or if I got sicker in the meantime.0 -
Still here too. Just had my 6 month ultrasound/mam. It came back with changes, but nothing alarming. My BS did say that she wants ultrasound/mam again with my MRI in April. Good news I guess, but still on this crazy train.
ALH/ADH bilateral. In the last year: 4 core biopsies, 1 stereotactic biopsy, 2 lumpectomies, hysterectomy and right side oophorectomy. Tried tamoxifen, didn't go well. Close watch and prayers at this point.0
