Member of the "6 Month Watchful Waiting Club", Unite!
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Hi - I guess I am now in the 6 month club. It's a been a wild and stressful journey since the mammogram that changed my world. I just turned 40 this fall, and had my routine mammogram the Friday after Thanksgiving. (This was my second mammogram, as I had a 2-D one three years ago when I was experiencing breast pain.) The mammogram I had this time was 3-D, and the radiology technician immediately saw a dense area. I've known I have had dense and fibrocystic breasts, so I wasn't too concerned at first. However, she had me wait while the radiologist checked the image, and then I was immediately sent for a US. That showed a mass, which was originally describe as "tiny." I was immediately scheduled for a needle biopsy the following Monday. I waited all week for those results, and finally had to call to get them. Talk about nervewracking! My doctor told me it was ADH, mentioned a lumpectomy, and referred me to a BS. I went to that appointment and got my surgery scheduled for the next week. Two days before the surgery, the BS called with the results from the MRI. Apparently, they looked bad. The mass seemed much larger than they had originally thought. The BS cancelled my lumpectomy and scheduled a second biopsy from a different angle, a PET Scan and an appointment with an oncologist. The PET Scan didn't show any areas that looked suspicious for cancer, and the second biopsy came back also ADH, so they rescheduled the lumpectomy surgery. (Apparently they had been looking for cancer elsewhere in my body.) After I finally had the lumpectomy (a full month after the MRI), I found out that the mass, although larger than they had thought - 6x7x2 cm, was only ADH (although I'm not sure "only" is the right word). I do have family history of BC (my mother currently has it). I was a wreck for that month between the mammogram and finally finding out my results. I have an appointment coming up with the oncologist, where I've been told he is going to recommend medication to keep the ADH at bay. I have a mammogram scheduled in June and an MRI next January. They tell me that I will keep rotating the two. I'm trying to stay positive and tell myself it could've been worse, but I'm struggling with dressing for work, since my right breast is now noticeably smaller than the other one. I've thought about using a breast partial, but I'm wondering about what kind would work for my situation. I'm wondering if that is something the staff at the Cancer Center will help me with. Sorry this got so long . . . guess I needed to get it all out.
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Wow Yogagirl, sounds like you have been experiencing some intense times. Glad it wasn't cancer and that they are going to be keeping an eye on you. I have the BRCA2 mutation and have my 6 month appointment for a mammogram this coming Monday. This is year 7 since my cancer, hopefully it will be clear this year as well!.
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Oh my, I would have been a wreck too! So happy for you that it is not cancer and I pray for continued health for you.
I have my appointment this Friday at Mass General for a consult with a High Risk breast specialist. I am just concerned how I could go from scattered areas of fibroglandular density to heterogeneously dense breasts with a 10mm nodule in one year. My gut tells me it's nothing but my mind is fighting it every day.
Wish me luck!
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Isee-
Hope all went well with your mammogram on Monday. Keeping my fingers crossed for you that you remain clear.
I also tested positive for the Brca2 mutation, and will have my first mammo since surgery in April. I am very nervous- I feel like I do not want to have the "bad" breast compressed. If you don't mind sharing, have you had every six month screening during the last 7 years? If so, have you been ok and not wigging out about it? I am not sure how I will feel having mammo/mri every 6 months. I think the waiting for results will be difficult, but may get easier as time goes on.
Wishing you the best- Barbara
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Isee - I hope everything went well with your mammogram and that you continue to be cancer free! Wow, 7 years of 6 months and waiting. . . Does it ever get less stressful or more routine?
HollyMaine - Wishing you luck! It's good that you're getting a followup with a high-risk breast specialist, so they're keeping a close eye. I know with my situation it helps to know that my doctors are being vigilant.
Capecodgirl - It sounds like I'm going to need to go on hormonal therapy as well, specifically Tamoxifen. If you don't mind sharing, have you had any trouble with side effects?
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Yogagirl-
Many people end up having no or very little side effects. I hope you are one of them.
I think I have had a much easier time with the tamoxifen than many others here. After about a month I started getting hot flushes- they started small, and the intensity has increased a lot since then. Not ripping my clothes off hot, just uncomfortably warm. I can deal with it right now. If it gets worse I will take the Paroxetine 10mg that my pcp prescribed. The only other SE that just started within the last couple weeks is that my hands and fingers get very tight/cramp up at night. Also shooting pains up my arms to my elbows which are also very sore. Pcp said this was most likely from the tamoxifen and prescribed tizanidine 2mg which helped. But I stopped taking that and have been drinking golden milk tumeric tea (recipe came from Epicurious) and the symptoms seem to be less. I do make a double batch and drink it all in one day, but I do like it.
I take it from your name you do yoga? I just got back from yoga after a long time away. Went back because I can't run right now (bad knee), but after two days of it I feel really good!
Good luck with the tamoxifen-
Barbara
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Thank you, MelissaDallas - nice seeing you out here! Hope all is well!
I was moved from the 6 month club to the year club last year, despite callbacks for additional views, and of course, too dense to really see anything. I have my 3D mammo in a few weeks and I am glad we will look deeply inside for the first time (military system didn't have this technology), but also a bit worried. Meanwhile, I've been having problems with my left arm and found a lump in my forearm, about an inch below my elbow. Heading in to have that checked this week, doc also thinks something is up with the lymph nodes in my underarm. The mind can go crazy on all of this stuff, hopefully it's just a fatty lipoma that is pressing on some tendons...fingers crossed. SIih.
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I joined this club in July with 2 biopsies showing ALH and radial scar with a very strong family history (sister with breast CA before 50, aunt and cousin with ovarian, a second cousin with breast CA). Just had my first 6 month check-MRI normal, Birads 2!
I also started Tamoxifen and tolerating with no side effects
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Hi, I hope things go well for you, I just wanted to say that I had a lump I found in June 2017, regular mamagram in July did not show the mass. I apparently have dence breast tissue (which no one ever told me). I was scheduled a ultrasound the 1 st of August, which did show the mass, plus we found 2 lymph nodes that showed change. I go every year for mamgrams, and they never picked up anything, since I probably had the IDC for a while per the oncologist. Before we did my biopsy in August, the radiologist had me do the 3 -D mammogram (no cost to me) because she was curious if it would show the mass, it did. I have had chemo, wide excision lumpectomy with lattimus Doris flap reconstruction, and now radiation in that order. I will start tamoxifen after radiation, and starting in July have either a ultrasound or mri every six months for 5 years. I told my Breast surgeon that I don’t trust the results from a mamagram any more.
I hope this info helps you in your decisions concerning your breast density.
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Hello ladies , I hope everyone is doing well . I am still in the same holding pattern of wait and see for now . My doctor is monitoring my intraductal papiloma . I just made it through 6 months of waiting after my diagnosis of the papilloma and I have had 3 doctors tell me it needs to come out and one doctor tell me we can monitor it for changes . The stress of waiting is getting to me most of the time . Does anyone have a story to share with me ? Better safe than sorry comes to mind. Thank you , have a wonderful day .
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Hi Ginger! I was just diagnosed with intraductal papillomas after my excisional biopsy performed last week. My surgeon said even if that's all that showed up in the core biopsy performed on 1/30/18 (I was diagnosed with a radial scar and ADH after that one), she would have recommended removal of them. While the excisional biopsy isn't a barrel of fun, I feel much better knowing that it was removed and biopsied.
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Thank you for sharing your story with me momto3sons. I hope you are feeling better now . I had surgery on my right breast over one year ago so at least I know how recovery would be and that part doesn't bother me too much . It is the stress of not really knowing what is in there . I would rather remove the whole papilloma and know once and for all there isn't anything else in there. My biopsy results showed there was "questionable tissue " in there as well . I just don't think I want to wait another 6 months to wait and see . sigh ..
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I don’t blame you - I’d want it out, too. My BS did give me the option of excising or not, but I knew it would stress me out not having the whole area biopsied.
The stress of waiting is definitely toigh
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Hey ladies. I had a long month of testing in October where I was given a birads 5 and told that I would need to get a spot removed even though the biopsies came back negative. I changed drs though because I wanted a second opinion and they decided after more biopsies and an mri that they can do a 6 month wait and then reevaluate. They said I have a radial scar that is 3x2cm. Felt like I dodged a bullet on that one!!
My question though is that I wonder if the spot that they biopsied will fill back in again? It feel like it’s filled in and that one side is taller than the other. Also, can a radial scar cause dimpling? I am feeling uneasy that I had a change in my breast like that... my ob said that it’s probably just scar tissue that is filling it in but it’s making me nervous. Has anyone experienced this?
My re-evaluation is in May. 😬
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Hi everybody - I'm 65 and had my first mammogram in December 2015. I was told I have busy breasts, many loosely grouped faint microcalcifications in both breasts, and a cyst. They biopsied the most worrisome microcalc which came back fibrocystic changes only with no abnormal cells. Every 6 months for 2 years I had diagnostic mammograms and an ultrasound. In April of 2017, I was given the all clear and was told to go back to annual screening. My annual appt is this Monday, April 16. Does anyone have any information or experiences about how worried I should be a year after given the all clear but also having busy breasts. I'm at increased risk for bc because of family history. My genetic testing was cmpletelt negative . Ive abeen on evista for 2 years. My five year risk is 3-7% and lifetime risk is 13.6%. My anxiety is through the roof. I'm paying out of pocket for a diagnostic mammogram because the idea of waiting a week for screening results with the possibility of a callback is unbearable. Thank you for listening and not judging.
Franki
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recently I’ve learned that I’ve had a silent heart attack somewhere along the way and that makes waiting for test results and appts even harder
Franki
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Franki, given the fact that your lifetime risk is right in the zone of what an “average” woman’s is AND the fact that you’ve been on Evista for 2 years, I wouldn’t be terribly worried. I totally get the anxiety, but I would think these 2 factors should be reassuring to you. Screenings can be crazy-making, but it seems to me your risk is not high at all
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momoschki - thanks for responding. I value your opinion. I get confused with how the risk factor stuff works on the calculators. My risk numbers are from the cancer.gov website survey. It gives me 3.7, 5 year risk and 13.6 life time risk. But it also says the 3.7% risk is compared to a 2%- 5 year risk for an average woman. And it compares my 13.6% lifetime risk to an average woman’s risk of 7.8% making my risk almost double. I know some statistics says lifetime risk of about 13% . I asked my genetic counselor about these numbers thinking I was close to average risk too. I can’t remember her exact explanation but she Said my risk is definitely double. It might have been something like the 13% average woman risk is for a younger woman. As we age, the 13% goes down and the other number goes up. The hope is that evista will takemy double risk to average risk for invasive bc. Thanks for validating the crazy making aspect this process.
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I can definitely relate, as I have the bad habit of trying (futilely, I think) to pin down my own exact risk with a dx of ADH. I've had doctors estimate a 20-25% lifetime risk, and yet some calculators pin it at 40%! You can make yourself crazy. FWIW, none of these calculators are much more accurate in predicting any one person's individual risk than a coin toss, from what I've read.
I'm right with you in the anxiety department: I get checked every 6 months as well and have an ultrasound coming up too on Monday the 16th. To say I am a bit tense is an understatement...
I've been doing this for 7 years now. Ugh.
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I’m in the club too! I started my mammogram journey in September 2017 on the day of my 40th birthday. Called back before the end of the day due to areas in my right breast. Left breast was perfect. So I’ve been getting 3D mammograms and ultrasounds every 6 months. At my last appointment last week, one of the cysts grew from 2mm to 9mm. And I have a new spot that wasn’t there last time. A tiny spot thats reported to be a subareolar hypoechoic nodule with indeterminate margins. So I have a core needle biopsy on Monday morning.
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Hi Franki
I started here around the same time you did. Mine was in Sept 2015, when i was diagnosed with adh. I also go every 6 months for check ups. I was told 5 years of every 6 months. I don't look at stats any more as they only were adding to my anxiety. I've realized that stress and anxiety is worse for your body than anything else. I had lymph nodes biopsied last year. This year I had a uterine biopsy due to none stop bleeding. Everything came back normal. It was nerve racking. Now I only worry when its 2 weeks or so before my appt. I'm to the point that I tell my self it's going to be what it's going to be. I try to live a healthy life and as normal as possible. I also had gene testing done and came back negative for everything. I understand your anxiety but I really think you will be just fine. You are taking evista which is good. I declined tomoxifen but will probably take evista when im finally in menopause, less side effects. Try not to put to much thought into it I know it's easier said than done. Some things are just out of our hands. Sending you HUGS!!!
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thanks everybody for sharing support and experiences about this process of waiting, wondering and trying to live a life.
Momoschki - I don’t know how you’ve done this for 7 years. You give me hope that I can do this too.
Mnburris - welcome to the club.
Tinkerbell - nice to hear from you. It sounds like you are doing a great job with the anxiety/waiting. Great to hear.
Sounds like Monday is a popular day for tests. Will be thinking about everyone and hope tomorrow goes quickly for us!
Franki
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Not so sure how I have done this for 7 years either,but what other choice have I got? Wish I could say it got a lot easier. I still ping pong between feeling confident and that everything will be fine vs feeling like this will be the time when my luck finally runs out. Honestly, just the sight of the cancer center where I go for screenings makes me physically ill.
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momoschki- i'm the same way. The closer the appt gets I'm sure this is the time my luck will run out too. I have severe panic attacks whenever I go near the center where I go for screenings. My therapist told me to avoid driving on that road because it's too triggering. Right now I am trying to pass the time by distracting myself by pottering around the house doing meaningless things. I am counting the hours until tomorrow night when I can take a xanax. I take another one in the morning before I walk out the door.
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Hi Frankie
Trust me, I could not have said it better than momo. I still feel like a ticking time bomb. Everytime I feel something, I think its cancer. I have ptsd from this diagnosis. I just try to tell myself some things are out of our hands. I have accepted my risks and I try to live a normal life as possible. That doesn't mean that when I go to my appointments , I don't have anxiety, and panic attacks. I go in by myself and my husband waits outside because he cant come in. This last time my radiologist was on vacation and I was only suppose to have a mammogram, but the radiologist filling in asked for an ultrsound after my mammogram. I freaked out and texted my husband this is it. So yes I have learned to put it out of my mind til the time comes, but it is hard. Good luck Frankie you will ne in my thoughts and prayers.
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thanks Tinkerbell. I feel everything that you feel. I have ptsd too. I’m doing much better in between appts but as the appt gets closer - I swear symptomatically I’m worse with each appt - the day before and day of. I’m so sorry about your last appt - I would have freaked out too. And sorry they don’t let your husband in. My center is the same. I have an hour and a half left to go before I can take a Xanax I’ll let you know what happens tomorrow. My appt is 10:15. Thanks for caring
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update: thrilled and relieved to report a clean ultrasound. Now it’s can breathe again for the next 6 months. Unbelievable tension has lifted, but I am exhausted! Djabi, how did you make out today
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thanks dear friends for helping me pass the time the last few days before my appt. appt is over - all is well. I still have many things they are watching but no changes. I woke up literally shaking like a leaf and took another Xanax as I walked out the door. I arrived obviously on some kind of sedative. The technician was great when I told her I took Xanax last night and this morning. She said that was fine. She told me to let her know if I felt like I was going to collapse while she took the images. She could go slow and let me take breaks sitting in a chair if i felt weak. And she put a chair behind me in case I was going to fall. She said some women have collapsed and fallen on the floor. Hope everyone else will check in about their appts today
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momoschki - great news - I’m so happy for you! Yes I am exhausted too but so relieved
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Thanks- I know well what you mean by that sedated feeling. I took a klonopin last night and another the morning before I left. Felt pretty loopy, but that’s better than the alternative. Afterwards I took myself on a little shopping expedition and now I think a nap my be in order...
Congrats, Djabi on a good outcome as well. Whew! Onward until October.
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