ADH/ALH Are you doing anything different after diagnosis?

JayeGA · May 2012

I'll be meeting with the oncologist this week to discuss options. Just wondering if anyone is doing anything different after their diagnosis? I've basically changed EVERYTHING, and I needed to. I am overweight, my idea of happiness was eating a bunch of sugar foods, I was stressed and worried about a lot of things, got very little sleep and didn't really know how to relax. I liked to walk but did almost nothing about practicing yoga and meditation.

I'm not sure changing any of that would improve my breast health, but I'm going to do it, and would like to know if these thoughts have crossed anyone else's mind?

Thanks, Jaye

mckenna · May 2012

i was diagnosed with adh in sept/oct of 2010. my surgeon did not recommend even seeing a medical oncologist and i changed nothing. i was however followed by his wonderful nurse practitioner that orded an mri in march of this year (even though all mammos and ultrasounds had been clear). mri found a very small spot of dcis. i had a lumpectomy that showed no evidence of disease as the mri biobsy had actually removed all of the cancer. if the infection from my lumpectomy (infection is nowhere near the incision site but on the same boob and no one can really tell me what is causing it) ever clears up i will start 5 weeks of rads next week and then 5 years of tamoxifen. i don't tell you this to scare you, just so that you are being proactive with your medical team and make sure they are following you closely and referring you to the right specialists. i wish i had demanded a referral to a med onc at my adh diagnosis. i am not sure she would have changed the treatment for adh, but now i will never know. i am only 38 so i am being treated more aggressively than some with a DCIS diagnosis. now since the diagnosis, i am really watching what i am eating and trying not to eat too much meat. i want to get into a good exersice routine but it is hard with this infection and now i am afraid to sweat because i don't want the radiaion marks wearing off any more eaisly than they already are. all the things you are mentioning were things recommended to me by my MO after the diagnosis, i wish i would have done these things after the adh diag. good luck to you.

JayeGA · May 2012

{{mckenna}} I am so sorry you are going thru this. It sounds like you're doing everything right and your followup was great. With clear mammos and ultrasounds I think most people would feel like everything was ok. Glad you got the mri and are moving forward with treatment, you sound very focused and determined, and that makes a big difference. My mom did a complete turnaround after her bc diagnosis many years ago, she changed her diet, dropped a toxic husband (my dad), changed her job (it was awful) and started walking every day. After awhile, she was singing in the mornings! She never had a reoccurence (sp) and she's my inspiration. It's never too late to start, and of course, there's unfortunately no guarantee, but it's worth a shot.

Thanks for sharing your wisdom with me--so glad you got treated early! I would love to hear what exercise you decide to do once it's ok to get started. Jaye

momoschki · May 2012

Jaye,

Yes, I was dx'ed with ADH in February of last year and am doing many things differently. Ramped up my exercise program and have lost 10 lbs, have greatly cut back on my wine drinking (my to my displeasure!), cut practically all the meat out of my diet (altho I was not eating that much to begin with), and try to by organic fruits/veggies when possible. I am seeing an integrative oncologist who has me on a number of supplements and tests my blood 2x year for various markers/levels. I see my BS 2x year as well, and she follows up with mammos, US, and MRI's, so I am always getting scanned every 6 month. This is incredibly nerve racking, but also reassuring. Probably the most radical and controversial thing I did was to get a breast reduction after reading a body of research (mostly out of Canada and Scandanavia) that showed that women who had had substantial amounts of breast tissue removed, especially those who were over 50 (I am now 54), had decreased incidence of BS. I found a PS who believed in this research, although it is largely either unknown or dismissed (my BS pooh-poohed it), and is part of an oncoloplastic team that routinely does such surgeries. For me, it seemed like there was no downside. This Dx felt like a sword dangling over my head and I really felt the need to do something-- not just to be passive. Whether everything I have done will prove effective remains to be seen-- no guarantees, for sure. Good luck to you!

mckenna · May 2012

jayega,

i really do not like to exercise so right now while other issues are going on, i am walking 30 minutes a day. my kids have to be at school at 7:45 and i don't have to be to work till 8:30. it only takes 15 minutes to get to my office so i drive there, park my car and walk from 8-8:30 in our down town area. i try not to sweat because i have to go to work so it is not a huge cardiovasular exercise time but before i used to sit at my desk and read or surg the internet so i figure it is at least a start

JayeGA · May 2012

mckenna, I think it's great that you start your day off that way. I can understand not wanting to sweat b4 work! but to have your walk completed b4 work is great! Jaye

JayeGA · May 2012

Thanks much for your response, momoschki. I have actually never heard of an integrative oncologist, and it sounds like that's something I should check out. My visit with the oncologist was disappointing, and I'm going to research to find a doc that includes complementary treatment. I appreciate the heads up! Jaye

bdavis · May 2012

I was diagnosed at 35 with ADH and the only thinh I was told to do was get yearly mammos and see the BS once a year (plus my gyn once per year)... after a number of years, they started doing US, and the BS said I didn't need to come anymore... WELL... after 12 years. I was diagnosed with cancer, not seen on a mammo... so if I were 35 again, I would definitely have gotten those MRIs EVERY year.. and take tamoxifen which can reduce your risk of ADH turning into cancer by about 40%.

Breezyanna · May 2012

Hi!

I was diagnosed with ADH on Friday so this is all a bit new. I am 31 years old and I have never had a mammogram and the breast surgeon said I don't need one until I am 35...Only the lump they removed was ever ultrasounded or biopsied. So who knows what else is going on in my chest...he wants me to come back in 3 months for a check up since I have an itchy flaky nipple as well...red flags going up

The more I think about this and read on this site the more I see I need to take the reins here in my care. Planning to sera risk specialist at a cancer hospital.

Anyway, to answer the question, I am also overweight by probably 100 pounds unfortunately. I used to be a very competitive athlete. I am thinking of joining a Planet Fitness near my work and going on my lunch breaks.

Also, I ate healthy today. A first for me. I usually eat fast food every day I'm afraid and I am almost positive that my lifestyle is contributing to my breast issues...

So, step one, join a gym. That is tomorrow's project. And it's less than $20 a month! I spend more than that a WEEK on fast food. This is definitely a no-brainer for me.

JayeGA · May 2012

I really appreciate your feedback, Betsy, it gives me a lot to think about.

How was the cancer found? Thru ultrasound? Any probs with the Tamoxifen? Thanks! Jaye

JayeGA · May 2012

breezyanna, welcome! And good for you for taking an active role in your care. I have a good relationship with my BS and she has actually changed testing because I questioned it. It feels good to be a partner in my health care. And congrats for changing your diet and thinking about exercise--I'm overweight too and after a couple of months I'm feeling better and seeing the pounds slowwwwly drop off, LOL! I'm not under the illusion that healthy people don't get breast cancer--I just don't want to make it easy for it!

Let us know how things go for you! Jaye

bdavis · May 2012

Jaye.. For both the ADh /lump and the cancer, I found them... neither showed up on the mammo. An ultrasound did show the cancer, but they can't just go looking for things with US...Tamoxifen is going fine... some hot flashes, but nothing I can't handle. My cancer was 98% estrogen/progesterone positive, so Tamoxifen is very important in my treatment. I wish someone had mentioned it to me back when I was 35.

Anna... Kudos to you for trying to get healhy.. exercise and eating right is a good thing all around... but don't beat yourself up. I was always in great shape, especially when I was diagnosed with ADH.. I had like 12% body fat at the time.. not so much now. It is my goal to now lose 30 pounds to get back to where I want to be... Stay strong and set small goals.

mckenna · May 2012

bdavis, i am sorry to hear what you have been through. do you have a breast surgeon you trust now? i have switched and feel so good about my decision. how are they following you now. i will continue to be seen twice a year, once for a mammo and once for an mri, i feel very comfortable with that schedule of monitoring.

bdavis · May 2012

I have the same BS ... I think times have changed.. perhaps 15 years ago, that was the standard of care... but I also have a second BS who did my BMX.. I chose to travel to New Orleans (from NJ) for a particular recon, so I have a 2nd BS anyway... And today I had an MRI as a way to monitor the chest wall and nodes.. and skin.

thatsvanity · May 2012

Hi I was diagnosed with ALH and I had an elective mastectomy but I should be eating better and losing weight and exercising. I'm sure I would feel more energetic and not so tired. I was doing more healthy stuff before my diagnosis, I think it was just my age and genetics, but all the good stuff foe our bodies keeps us healthy! Keep us posted!

Amy Lynn

JayeGA · May 2012

I appreciate all the info from everyone--it really helps to hear of your experience and history.

Thanks for the feedback Betsy. Glad you are doing well.

TerSharMac · June 2012

Hello,

I was diagnosed with ADH in January of this year and had a lumpectomy to remove all of the affected cells in February. I was reluctant to move forward with any other type of treatment as I'd been poked and prodded enough and just wanted a break. Then I started to think that what if I don't do as the surgeon suggested and meet with a medical oncologist and go on a preventive treatment plan. I am high risk because both my mother and my maternal aunt had breast cancer so I would be foolish not to see a medical oncologist.

I met with my medical oncologist yesterday and she is wonderful. I will start tamoxifin tomorrow and will have follow up visits every three months. Also, my oncologist referred me to the onsite nutritionist and I'm very excited to get started with a healthier life style - I am a yo-yo dieter and need to just stop the yo-yo and maintain a healthy weight.

My diagnosis has opened my eyes that I am not getting any younger and I need to take care of myself if I want to see my granchildren grow into adults.

I'm very grateful that I've always been proactive with my mammograms and that my medical team is very proactive with my care in trying to prevent my ADH turning into cancer. I'm also very grateful that I stumbled upon this board, simply by researching the costs of tamoxifen. Thank you all for being here.

Teri

bdavis · June 2012

Teri... kudos to you... I was never told about Tamoxifen when I was diagnosed with ADH and ultimately I did get cancer.. Only then was I told I could have taken Tamoxifen... needless to say, I am now on Tamoxifen and the SE are minimal for me... some hot flashes... perhaps a reason I am not losing weight, but also I am not gaining. I recommend taking baby asprin 3 times a week to combat potential clotting issues.

Lucia83 · June 2012

Dx with ADH in Dec. 2010, had it removed in Jan. 2011, then saw a high risk breast specialist/surgeon who recommended Tamox. I initiated the contact with the breast specialist. Due to a family history of ovarian and breast cancer, I had a proph. BSO and hysterectomy in Nov., then started tamox. in Dec. (The surgeon felt since the ovaries were being removed, might as well take the uterus too, since I'm done having children, and would be taking tamox). Some night sweats, but no other symptoms so far. I'm also on a rotating 6 mo. schedule of MRI/mammo. The surgeon also recommended a lowfat diet, exercise, and minimal to no alcohol. Already an exercise junkie, I recommend it wholeheartedly, both for psych. and physical benefits. Best to you.

JayeGA · June 2012

Thanks, Lucia. It's great that after 6 mo on Tamoxifen, the only SE is the night sweats. Sounds like you took the best course of action for yourself, especially considering the family history, which I can totally relate to.

Also wondering what type of exercise you're doing? I'm walk/running and doing some strength training and floorwork.

Jaye

JayeGA · June 2012

Thanks for the feedback, Teri. It's great to hear from other women who were diagnosed with ADH and their course of treatment. You're doing some great things for yourself!

Jaye

vmudrow · June 2012

I decided to have PBMX after my diagnosis of ALH, they definitely wanted me to take Tamoxifen, but I was tired of the worry, had strong family history and also didn't want to take Tamoxifen. I have been very happy with my nipple/skin sparing surgery (possible because it wasn't cancer). There are a few of us who have chosen this route. Keep up the exercise it's great and will make you feel better.

Hugs, Valerie

BBJJBB · July 2012

I was diagnosed the first time in sept 2011 with adh and alh. I was diagnosis july 2012 with alh. However i was called to come back in because radiologist found a cluster of calcs in the same area of the two biopsies taken a week ago. Waiting for the cluster biopsy. I told my surgeon that instead of a lumpectomy I would rather have a mastectomy and reconstuction. Anyone with comments, similar experiences etc... Kind of confused right now. Dr. says lets not drop the atom bomb just yet. And I'm thinking the has been dropped and I am waiting for it to hit ground zero. Any comment is appreciated. I don't know how to put this into perspective.

momoschki · July 2012

I can only say what I would be inclined to do in this situation. I was Dx'ed with ADH in 2/11. My feeling is that the ALH would raise my risk even further and that I would tend towards a PBMX, since otherwise, I think I would be so worried I would not be able to function. Of course, this is an extremely personal decision, but ultimately I think it depends on your comfort level with living with risk and uncertainty. I know that I stink at that! Maybe a second opinion would help you to sort this out?

ED2012 · September 2012

I am 46, premenopausal, and was dx with ADH and ALH via CNB on 8/14/12 and then had a f/u wide excisional biopsy on 8/22/12 that showed residual ALH; my doctor has recommended a five year course of tamoxifen and the every 6 month f/u with BE and mammo/MRI rotation. While I have been a nurse for over 20 years (with a different focus) all of this is very new to me and I must admit, I am feeling a bit overwhelmed by all that has happened. I am one of those that had no family hx and this was found d/t clustered micro-calcs on a routine mammo. While I am SO grateful they have caught this early - I still have so many questions/worries: like should I take the tamoxifen, should I get second opinions/reads on my path results to make sure they didn't miss DCIS/LCIS; anxiety r/t all of the stats and how I feel like I am walking around with the "spector" of potential CA development hanging over my head. I have researched until I am nauseous and would really like to return all of this experience back to the store for a refund please! I am so glad to have found this group of people for support! I also appreciate hearing some "normal" things about tamoxifen use...as I was scared to death after reading so many negative reactions! I wish I could provide advice to BBJJBB about how to put it all in perspective - but I am struggling with trying to do the same thing. I think you are on the right track b/c you are reaching out to others with life experience in this realm. I wish you the best as you move forward in your journey and I pray you enough. Any advice about this journey, tamoxifen use, other prevention strategies, etc would be appreciated.

JanetM · September 2012

I understand your anxiety about this. MY diagnosis is similar but with the addition of LCIS. I have chosen the path of careful survelliance. I was offered Tamoxifen and decided I didn't want to go down that path. That is my personal choice. Good luck with whatever you choose to do.

ED2012 · September 2012

I have decided to go for a second opinion, just to have the peace of mind on whatever path I choose AND based on the fact that since all of this is so new - I really don't have any point of reference. These are all very difficult choices - thanks for sharing yours JanetM, and wishing you all the best in the future!

bdavis · September 2012

ED2012... When I was diagnosed with ADH 14 years ago at 35, no one offered Tamoxifen. I was told to just get my yearly mammos. Well, that didn't work out for me. I had yearly digital mammos, had ultrasounds, saw a breast surgeon yearly and the gyno yearly, and after 12 years I was diagnosed with cancer that was never seen on the mammo. Only then did my oncologist tell me that Tamoxifen could have helped me prevent getting cancer. if I knew then what I know now, I would have taken the Tamoxifen. In light of my surveillance woes, I chose to have a BMX instead of the recommended lumpectomy/radiation because I feel that mammos and Us didn't work on me.

I started Tamoxifen in December and really can't point to any SE. I do get hot flashes, but that started during chemo so I am unsure if the Tamoxifen is the culprit. I haven't lost weight and I have tried, but I also haven't gained weight. My knees get achey when I stand after sitting, but my knees have always had issues. I do go to spin class and zumba and have no trouble, so perhaps my knees are just being 49 and having a history of lots of tennis (that put me in PT when I was much younger).

All I can say, is that it is a personal decision, but ask yourself how you would feel if you could do something to prevent cancer, didn't do it and then got cancer. Cancer sucks. Chemo sucks. Being bald sucks. I forever have the "big C" hanging over me. Not fun.

ED2012 · September 2012

Betsy - first let me begin by saying how grateful I am to you for the time you spend reaching out to people like me. As I have poured over the discussion forums over these last couple of weeks (didn't even know they existed prior to 8/14), I have come across many of your posts and have found them straightforward, insightful and balanced. In my heart I know I am leaning towards taking the tamoxifen - as you so well stated: I just don't think I could live with myself knowing I could have done something and didn't. I know some of my concerns (potential weight gain) are far outweighed by the possibility of a cancer dx and I am trying to work my way through those fears...thinking those fears are much easier to deal with than the real-life scenario of the "big C". I am trying to keep all of this in perspective - seems to be an up and down battle that is as much psychological as it is physical. Also wonder sometimes if I am overreacting when I see so many that actually have a ca dx...and here I am so upset with having a dx of ADH/ALH. I am learning this is a journey that I will have to work my way through as I go along. Thank goodness for generous souls like you and all of the women on this site that willingly share feelings, experiences and knowledge. I promise to keep your wise words in mind as I move forward.

farmerlucy · September 2012

I had ALH and ADH and had a PBM in Feb. In the final path they found a 1.1 cm IDC, in a completely different area along the chest wall. Needless to say I was devastated. But 6 months out I am done with my recon, my breast look AMAzing, and I have found many blessing in the DX, though of course I would have preferred that they didn't find anything. I think the breast density was the key for the failed screening for me. I asked my onco at my first appointment if he had looked at my MRI and if he could now see the cancer. He said he had looked at it and could not see it. I asked how dense my breasts were and he said EXTREMELY. I have not regretted the PBM turned MX for a second. The recon was tough but worth it. Pre MX I had a 50% risk, I am Brca and BART negative.

bdavis · September 2012

Farmer... and that is indeed scary. Dense breasts and screenings do not work well together. Its an unfortunate diagnosis and yet a fortunate discovery and decision on your part.

ADH/ALH Are you doing anything different after diagnosis?

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