ADH Club
Comments
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jld, no, not on Exemestane, nor any if the others. My onc and I have discussed the possibility numerous times and when I pressed him, he finally said he did not think the benefit I would gain would be worth it. Instead, he has me on many supplements. I have upped my exercise to 5-6 times per week and have lost 25 lbs since all this nonsense started. Cut WAY back on the alcohol (this was hard-- I really like a couple of glasses of wine with dinner.). Also, (this is controversial), after my excisional biopsy I had a bilateral reduction, since there is some research (mostly Canadian and European) that suggests that this may lower risk. I found a great oncoplastic team here in NYC that believes in the efficacy of this surgery...let's just hope they are right!
Still, although I am frightened of potential SE's of various SERMs and AIs, I continue to wonder if trying one would be wise-- at least then I would know I am doing everything possible. It's tough, as I feel I live my life in 6 month intervals and makes it hard for me to plan things far ahead without wondering "what if?" I was certainly never much good at handling uncertainty before any of this and now I feel like I have no choice but to live with it.0 -
Went to see my surgeon today for some brown discharge and sharp pains in the nipple. She checked it for blood and today it was negative. She didn't get much. She said because of my ADH on the other side, "You know the drill....ultrasound and possible galactogram." Hopefully, I can get that done this week on fall break.0 -
I haven't been on the boards for a while. Keeping busy since I'm not constantly running to appointments.
Momcat: Good luck with your upcoming tests and I will pray for positive results.
I have caught up on a lot of useful information since I was last on. It's great to have people with so much knowledge to keep us informed.0 -
How is everyone doing? momcat, momoschki, jld, any results on recent testing? I just wanted to let you ladies know I was thinking of you. ((Hugs))0 -
Had my mammo on Monday-- everything clear and I'm good to go for the next 6 months. Whew!! Incredibly relieved and glad this round is over. Hope everyone else had good, boring results as well!0 -
i'm so glad for you!0 -
momoschki--great news!
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Momoschki, wonderful news!! My surgeon called me back and my diagnostic mammo and u/s are tomorrow. The galactogram will happen as indicated. In December I have the LEFT side mammo, etc. as a follow up to my lumpectomy and excision this summer...My insurance company is just going to love all of this! LOL
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Thank you everyone for your good wishes. Momcat, good luck tomorrow and keep us all posted.0 -
glad to hear you got good news momoschki. Perhaps a glass of wine to celebrate! ( I know the subject of drinking was already discussed here, but I think one glass would be just fine )
Momcat - good luck tmrw!!0 -
momoschki - So glad to hear your results were good.
Momcat - Good luck and keep us posted.
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So happy to hear your good news, momoshki, and happy you got your results right away. I don't get mine until Monday with my BS, but I didn't get a call back from the mammo center for more pictures (the first time in over two years), so I'm thinking that's good news.
Good luck with your tests today, momcat. Will be praying for good news.
Thanks, all, for your support and good wishes. It really means a lot.
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Yes, very lucky that I always get test results same day. With mammo, I get to meet with radiologist immediately afterwards, then an appt with BS right after that. Definitely minimizes the waiting/anxiety factor. I think this may be the only advantage of being officially designated "high risk" (everyone else has to wait for phone call or letter in the mail.)0 -
Had the diagnostic mammo and u/s today. Concerning the mammo the Dr (New Dr) said, "looks ok. You have very dense breasts and I can't anything at all because of that. U/s looks normal." So I guess that's good. LOL.....of course, my ducts are wide. Now for my ADH surgery recheck on the OTHER side in December.
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I'm not sure if I should start another topic for this question, but thought I would start here and see what people think. Does anyone think it's "dangerous" to receive frequent and numerous mammograms (radiation) with the every 6mo screening schedules? I am only at the beginning of this journey so I've just started to do a little research, and I am completely at a loss as to which studies/articles to believe. Some say don't get mammograms, there's so much more radiation than thought, others say there is minimal radiation compared to other types of exposure. Guess I am just reaching out to those of you who may have already researched this topic or discussed it directly with your doctor. Some of you have unfortunately been going through this for years, and I was curious to know if you ever came across a study, or link, or article, or perspective that swayed you one way or another on this question- To Mammogram or Not to Mammogram??0 -
Radiation from mammograms is very minimal and I am not worried about it.I don't get mammograms every six months. They are alternated with MRIs and ther is no radiation with them.0 -
Finally got the results of my first post biopsy mammo today. No suspicious masses, etc, so I was very happy, but I do have a newly developed, never seen before microcalcification in the upper outer quadrant that surprisingly has left me in a strange mood. Not depressed, more like aggravated, I guess, when I should just be grateful that all is well. And I am grateful, but I 've driven this road before and even though it's just a lonely little microcalc at this moment, I know in a few months it will have spawned little friends to keep it company, blah, blah, blah. Now to keep from worrying about it until April. sheesh.
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Sports mom, the only time I really thought about the amount of radiation I was being exposed to was during the stereotactic biopsy. They did two sites and they took so many pictures to make sure they got everything right and it did cross my mind that it was a lot of exposure in a small amount of time. But the six month follow ups are spread out over time, so no, I don't really think about it, as I really need the reassurance that early detection will save my life. I haven't even researched anything about the radiation levels because I'm going to have the mammos regardless and I just don't need another thing to worry about. But that's just me.
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Back again, ladies. Original diagnosis of ADH and ALH. Had excisional biopsy yesterday. Surgeon called tonight informing that I have DCIS. Another surgery planned to remove all tissue. What's next?0 -
I'm sorry Mimi.
Why don't you try posting this in the "Just Diagnosed" thread? The ladies there can help more than we can. There are also numerous DCIS threads.0 -
Mimi, sorry to hear that. As Melissa suggested, come on down to the DCIS forum.
There is no single answer to your question, "what's next", because different diagnoses of DCIS can vary hugely; DCIS can be low risk and require minimal treatment, or DCIS can be aggressive and high risk and require more extensive treatment. And everything in-between.
To get your started, here's a thread with some information about DCIS:Topic: A layperson's guide to DCIS
And here's a link to the BC.org info section about DCIS:DCIS — Ductal Carcinoma In Situ
And here's another good website with information:0 -
thanks for the info - the links and the suggestion on new threads to join are so helpful. Even though I should have figured that out I'm not thinking clearly. You're all wonderful!0 -
Hi Mimi, sending you hugs and good wishes, hope and prayers, as you start your new journey. May you find all the love and support you need, both at home and here on these boards. I'm new here, as well, and I've never met a kinder, more generous, caring, thoughtful, supportive, and compassionate group of women, so willing to give of their time and their knowledge.
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Anyone mind if I join your club? My surgeon called today with the results of my stereotactic biopsy... no definitive cancer, but atypical cells were found. I have an appointment tomorrow to get more info and schedule and excisional biopsy. That's all the information he gave me, but I have lots of questions for tomorrow. Has anyone here had DCIS and later had atypical cells show up? (My DCIS was 4 years ago.) I know if the next biopsy shows DCIS again, the recommended treatment is mastectomy since I can't have radiation in the same area again. If the biopsy just shows atypical cells, I'm wondering what the treatment recommendation is.0 -
Jmb, they will recommend that you take Tamoxifen or an Aromatase inhibitor, depending on whether you are pre or post menopausal. They may also set you up on increased surveillance, possibly mammograms and MRIs alternating every six months.0 -
I turned down Tamoxifen after my initial DCIS diagnosis 4 years ago. (I'm 44.) Not really a fan of the meds. I've never had an MRI. Wonder if I should ask for one before the next biopsy.0 -
I've been taking exemestane for five months. Besides all the aches and pains it's given me, about a month ago, I began to suspect it was leaving me more than a bit depressed and foggy headed, but I soldiered on, sinking deeper into the blahs every day. Four nights ago, I finally decided to skip a dose. I haven't taken it since. The relief from the side effects has happened as quickly as the aches and pains came on. My head has cleared. I'm sleeping better, moving easier, feeling less crippled, easing into exercise again. What finally prompted me to skip the med wasn't even the depression, it was my hands continually going numb, then achey and tingly, like they were asleep and waking up. They burn and they hurt. I'm still feeling that, though not nearly as badly.
I haven't called my MO yet. I suppose I could ask him to add in an anti depressant. But those have their own problems and I'm not sure I want to go that route, either. I don't think I would be worrying about this if my biopsy hadn't been borderline for DCIS.
I know no one can answer this dilemma for me, so I'm not really sure what my purpose is in posting this. I guess I was just wondering if any of you have tried these medications, then changed your mind?
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Hi there!
This is my first post on here, but I thought I'd throw out an introduction...
I am 29, and have a 13 month old baby boy.
I had to have a wellness exam for work and to get in quickly I just picked a random NP that had the first available appt.
I was having pain in the right breast with a palpable lump, and a palpable lump in the left breast. She ordered a mammogram.
Once I got to the hospital the radiologist decided she would rather have an ultrasound, but then after the ultrasound she decided she did want the mammogram, and then I had another ultrasound after both of those!
It was clear on all of my scans than I have a substantial amount of lumps, so the radiologist scheduled me for a bilateral core needle biopsy with ultrasound guidance. They called with the results 11/21/13, and she let me know those two lumps came back ADH.
She can't guarantee the other eight lumps are the same thing, so my breast MRI is scheduled for this Friday. Apparently she wants to use the mri as a mapping tool for my lumps so the remaining eight lumps can be biopsied as well.
If everything else comes back ADH or a normal fibroedanoma than I have to schedule a surgery to have them all removed.
If anything is cancerous than we will talk about treatment plans then.
All this time I don't really have anyone to talk to, since my OB didn't order the tests there is nothing he can do until we get the mri results back. I'm just overwhelmed I guess with the amount of biopsies, and not really understanding the radiologist...0 -
Hi there Mrsrabb, i haven't been on here much but I just read your post. Did you get through all your tests? Thinking of you!0 -
Hi, Im new here. Im 39 and my ordeal started mid-October. Up until that point I was leading a normal life. In mid-October, a random pulsating burning sensation had me going for a Mammo and U/S in an abundance of being overly cautious. My OB/GYN thought it would be nothing. And it was. It ended up being a cyst that had burst. However, it just so happened that my Mammo showed a Radial Scar, as did my U/S. One thing led to another, the suspected 'radial scar' was biopsied and confirmed to be just that and in addition to the Radial Scar they also found ADH there. During this month long ordeal, my mother went for her yearly mammo (they had always been normal) and low and behold, she was diagnosed with breast cancer. My Moms sister (my Aunt) got BC at 49. So here I was now with ADH, which is a high risk issue, a Radial Scar (which can hide cancer) and a strong family history. Add to that other risk factors of having a child after 30 and extremely dense breast tissue and well, it put my risk for getting BC between 50-70% according to the Surgeons. I immediately knew that I was going to opt for a Mastectomy and thats what Im doing. On Dec 20th , I will be having a Bilateral Mastectomy w/Nipple Sparing Recon. I am 100% sure that this is what I want to do. Besides the hard #'s that show my high risk, I also have a very strong intuitive gut feeling that BC is on its way to me, its just a matter of time. So I am going to beat it to the punch. It was a no brainer for me. Im a single Mom and only parent to a 6 yr old and there is no way I would take any chances.0
