ADH Club

momoschki

I've got another six month check (a mammo this time) coming up in October. I'm actually not sure if it has gotten easier for me being over 5 years out. I suppose I am less preoccupied overall, but the period of about a month or so before whatever scan (mammos, US's , MRI's) is still dreadful. I know that statistically the odds are in my favor, but it's difficult notto feel very vulnerable.

scoutyboy

Thank you for your post Momoschki. I'm glad to hear that nothing has shown up in 5 years. And thank you, LovesLiterature for your well-wishes. I hope all goes well for you too! I'm grateful for such a supportive and informative community.

Ddw79

good luck scout . I've been through the same exact thing. The surgery wasn't too bad and I did it all with type 1 diabetes on insulin so you should do fine. Even I got to work a couple of days after the procedure. They may suggest that you go on preventive meds for ADH and I found that to be a tough decision for mysel

LovesLiterature

Well Ladies,

I'm recovering from my wire insert and then subsequent excision of my right breast to remove ADH. I am anxiously waiting for results September 23. I am hoping they don't find any DC's...invasive or otherwise, in their sample. Wish me luck.

scoutyboy

Yes, good luck! I'm glad you're done with the surgery.

scoutyboy

Yes, good luck! I'm glad you're done with the surgery.

Thanks Ddw79 for your encouragement.

Brina05

Positive thoughts for negative results.

LovesLiterature

Thank you scoutyboy... Thinking good thoughts for you tomorrow.

LovesLiterature

thank you Brina05, hoping you are well too.

scoutyboy

I'm back home from the biopsy. The surgery was no problem since I was asleep (as others have said-thank you). The localization was pretty painful though. I guess it's hard to get the local anesthetic to the right places. The clip the radiologist put in to mark the needle biopsy site was way off mark. For some reason it went in much deeper, so it was no use. Instead of the planned seed localization, they placed a wire along the path of the needle biopsy so the surgeon could extract tissue all along the wire, hoping that they'll get some tissue from the site of the microcalcifications (which are no longer there). It's unfortunate since they'll be less likely to grab as many of the cells around the original site since they can't locate it exactly. I'll get the initial report in two days and have the post op consult on the 30th. The sports bra really helps--thanks for the suggestion!

LovesLiterature

hi scout, I'm sorry they changed the game plan. That must be nerve racking. Hell yes the needle loc was painful! They also inserted blue dye into my breast. They kinda sprung that on me. Did you get blue dye too? Im so confused thinking back on it. I thought blue dye was for lymph node biopsy. Can anyone clarify why they would've injected blue dye before an ADH excision? When nodes, (sentinel or lymphatic) weren't even on the discussion table? Getting nervous for results this Friday.

scoutyboy

Hi Lovesliterature, I don't think I got any die injected. Or at least they didn't tell me. Maybe that's another way to help the surgeon find the site? I hope you have good results at your consult meeting. And quick healing from the surgery.

LovesLiterature

yes, I'm sure it was to help find the site, but I wish they would've told me. I hope you are feeling better today. I went back to work and it was ROUGH.

LRGO2016

Hi ladies, jumping in on the conversation. I had dense breasts, microcalcs, multiple needle biopsies (freaked out with worry each time). Had to have a hysterectomy and oophorectomy when I was 42. Lost my grandmother to ovarian cancer (age 49), other grandma survived BC, but we have extensive family history of others with BC or prostate cancer, stomach cancer...

I decided the writing was on the wall and got genetically tested, (+BRCA1), opted for PBMX.

Though this choice has been difficult and the surgeries tough, I am glad I have decided to take as much proactive control as I can in my health care. I have completed the PBMX (5/2016)and exchange to anatomical implants (8/2016). They found atypical cells on biopsies of removed materials but no cancer. As a result, I don't need rads or chemical warfare. Additionally, I no longer have to face a 6 mos waiting period of worry between checkups, and no more mammograms or mri.

I feel free. Truly free of a ticking timebomb. Though I still have a 3-5% chance of developing BC, it is so much better than the 87-90% risk I was facing..... I will be in a hightened screening group for the remainder of my life and we will be extra vigilant with other cancer screening tools.

I'm recovering well from my first two surgeries. Still have several more before we are done with the process. It is a tough path to follow but I'm glad I had a choice and the courage to take this step. My oncologist said I was likely only a year or so from a cancer diagnosis and all the more dreadful treatments that would require.

My advice to anyone with atypical results: If you have choices that allow you to improve your chances of avoiding cancer, it is well worth considering those choices. Discuss your best options with your Doctor and then choose the path you are willing to walk.

My case was both a hard but incredibly easy decision. I had a "crystal ball" giving me a glimpse into the future. I chose to aggressively fight the odds. Only time will tell if I will win the gamble. But I feel I have done everything I could to minimize my risk and I sleep easier because of my choice. I hope each if you have as supportive a medical team as I have and can make decisions that bring you a sense of control and peace, whichever way you choose to take. And I wish you all good luck with your diagnoses, treatments, or monitoring.

Suggested Reading: "A cancer in the family". By Dr Theodora Ross. ( If you have a known genetic risk.) It is an uplifting and informative book with lots of good resource information in the appendix.

Tinkerbell49

Hi friends

It's been a while since my last post. I see a lot of new names.

scoutboy so sorry you had to go through that in addition to all the anxiety and uncertainty. Hopefully you will get good results. praying for you.

LovesLiterature i did not get the die. I just had the wire and seed implanted.

LRGO2016 you are very brave. I hope all additinal surgeries go well for you.

I was diagnosed Sept 2015 with adh after a needle core bioosy. When I had the excisional biopsy it was clear no adh or cancer. Now im in the 6 month servelince. I have an appt. for my 2nd 6 mo. check up sept 23. My anxiety is high. To top it of my ins. made a mistake and cancelled it due to non payment even though I sent proof of payment. Now i have to appeal it, but it takes 3 months for a decision. So I'm going to have to pay oop. like it's not bad enough with all the worry of getting cancer I have to worry about pymt. I'm praying for great results.

Prayers for all of us.

LovesLiterature

Hi Tinkerbell and LRGO2016,

LRGO... Thank you for sharing your experience. I am getting my BRCA tests in a couple of weeks. Though I don't think it matters for me because it came back negative for my mom who is a breast cancer survivor. It will probably come back negative for me too. I guess there are still many genes they don't have a test for yet.

Tinkerbell, so when they did your excision, they didn't see any ADH? They got it all on the Stereostatic Biopsy? Wow, that is wonderful. I would love to know how you manage the stress of the Mammo every 6 months... do they give you Ultrasounds or MRI's in addition? Are you on Tamoxifen? Your appt. is the same day as mine ( I get my results). I will be thinking of you. Take care everyone, ..

momoschki

Tinkerbell, all my ADH was also completelyremoved by the stereotactic biopsy. Excisional biopsy found nothing. FWIW, that was over 5 years ago and I've been ok so far. Perhaps all the 6 month monitoring does get somewhat easier, but I still hate it. My next check (mammo) is in a month and I am already dreading it. Still, could be a LOT worse...

Wishing you all the best!

Tinkerbell49

Hi LoveLiterature

I had a core needle biopsy, i had 2 micro foci of adh. My excisional biopsy came back clear. The stress and anxiety come and go, but its always in the back of my mind. It gets bad about a month before my appt. This time im double stressed because my ins was cancelled and im having to apeal there decision because they made a mistake. Now im praying harder than ever that everything turns out good. I'm getting an ultrasound this time. I have to pay for it myself so if i need further test i will be in trouble because i dont have that kind of money. so my anxiety today is strong just got letter from the ins yesterday. I couldn't sleep and i stayed up crying. They alternate every 6 months mammo, then ultrasound and then mri. I was prescribed the tomaxifen but my gail score was low so it was up to me. i have the bottle but i just haven't taken any. I will also be praying for you. GOOD LUCK

Hi momo

You give me hope since you have been clear all these years. My radiologist said a lot of women with adh will not get cancer. I guess its in the genes only God knows. I wasnt stressing so bad this time until I got the letter from my ins. Now im a nervous wreck. God help me.

Good Luck everyone...

.

Ddw79

good to hear Tinkerbell. !!

The anxiety is a real life buster at times. Glad you are in the clear ... Again.

Thankfully my insurance covered most of that full breast ultrasound which cost $750 !!

I just made a donation to this breast cancer . Org site in honor of all of you brave ladies and how much we do to help each other here.

In gratitude to you all

momoschki

Tinkerbell,

Yes, the anxiety is terrible and I find that for me as well, it ramps up about a month before. Sometimes I really wonder how I am going to do this for the rest of my life. Hope you get your insurance mess straightened out soon.

Know that if you are post-menopausal, another preventive med alternative for you is Evista. None of the uterine side effects associated with tamoxifen. I've been taking it for nearly 2 years now and tolerating it pretty well

scoutyboy

Thank you for your prayers and well-wishes. My pathology report came back clear but because of the uncertainty in locating the biopsy site, I can't be too excited. Right before the surgery, the dr. predicted we'd get benign results and I wouldn't be eligible for mastectomy-- I think she was encouraging it given my family history (mother) and they found ALH and ADH in my needle biopsy. I am impressed with those who have done the surgery as a precautionary measure. I'll consider it if genetic testing comes back positive. In the meantime I'll be on the mammo/ultrasound bi-annual schedule like many of you (thanks for sharing your stories), and will talk with the surgeon about drugs next week. I'm not familiar with the side effects. Are they hard to tolerate?

Hoping for good results, LovesLiterature. Hope it's more definitive than mine. Hope you have a speedy recovery with lessening pain every day.

Tinkerbell49

Hi momo

Yes i just had some bloodwork to see where i am at with menopause. The results came back normal so i haven't even started. My mom went through it at 50. I just turned 50 but not me. I can deal with most of the tomaxifen side effects. I already have a hard time sleeping, body aches and some others. I just can't deal with in addition to every 6 months being checked for bc to also have to go through the same with my uterus and liver. It's stressful enough I can't handle any more. I will take evista if given the chance.

scoutboy I understand your uncertainty sorry you have to feel that. Getting clear results is still good knews. My excsional biopsy came back clear too. Good luck on you med decision hooefully it won't be as difficult as its been for me.

LovesLiterature praying and thinking of you today.

Today is the day, i go in this afternoon for my ultrasound. My anxiety is high. I took a xanax last nite and I'm still feeling it, but not enough. Wow this is mental torture I wish I didn't have all these feelings but i just can't help it. God help us all.

Sending well wishes to everyone in this journey we have been given.

scoutyboy

I'll be thinking good thoughts for you today, Tinkerbell. Great to hear your biopsy results were negative. I would imagine that anything they find with such frequent screenings would be very small.

Tinkerbell49

Hi friends

My results were good. I have scattered cysts but nothing to worry about. Thanks for your prayers I guess i made it through 6 more months. I hope i can clear my ins problems. They are crazy if they think im not going to have ins.

Good luck ddw79 and everyone else with up coming tests. I feel blessed to have this club it sure helped with my worries.

Thank you frankie...

Lots of love and hugs for all

Anonymous

Tinkerbell---awesome news on the benign results !

Scoutyboy----I took tamox for 5 years, and I took evista for about 7 years, very minimal SEs with both meds. Mainly hot flashes. good idea to have a yearly transvaginal US (if you take tamox) to monitor both the uterine lining and the ovaries.

Anne

momoschki

Yay, Tinkerbell! You must be so relieved--take a deep breath and celebrate!

LovesLiterature

hi everyone, thank you for your prayers. I'm still trying to let my diagnosis set in. I knew before the surgeon even told me (I saw it in his face). I have DCIS Stage 0 Grade 1. It's not the worst diagnosis and for that I am thankful 🙏🏼.He got clear margins. ThankGod. They assigned me an Oncologist today. That's when I knew it was real. I am so glad everyone had good results this week (tinker and scout). I continue to wish the rest of you here the best of luck and healing. I will be over on the DCIS boards. Hugs to all.

scoutyboy

LovesLiterature: I'm sorry to hear the news but I'm glad it's stage 0 and clean margins! I understand that it's essentially 100% curable at this stage. In fact, with clean margins, does it mean it's all gone? I hope the next steps will be tolerable and reassuring.

Tinkerbell: Very glad to hear you got good results. Hope your insurance issues get ironed out.

And thanks to others for supportive and kind words. I'm so grateful for this community. I wish you all the best.

Tinkerbell49

Hi

yes mommo i can breath again. Still trying to solve ins issues but i can deal with that now.😊

LovesLiterature so sorry on your results but yes it could have been worse. Hopefully it's small enough that all you'll need is tomoxifen. Check in with us and let us know how you are doing. The diagnosis is always hard but once you get your game plan it tends to ease up some. I believe clean margins does mean they got it all. Good Luck on your future treatments.

Thanks scoutboy still working on that.

Tinkerbell49

Hi awb

Thank you...😊