How many ADH/ALH who had lumpectomy but still got cancer later?

ps0705

I had ADH with surgical excision in 2004. It left a huge divet inside my breast that I could feel. This was before any medication was offered (If I read your original post correctly, I didn't have the option of taking anything to reduce chances of future cancer).

Anyway that is the exact spot my DCIS grew in in 2017. Found it because there was a lump in the divet. I got 13 years before anything developed, I guess.

Utahmom

my husband and I just were going over my prediction rate for bc based on the original lady that I met with. She used the Tyrer Cuzick Model (IBIS). She said she thought I was 30.9% lifetime risk but we just ran it with the confirmed breast density and atypical along with the other applicable data and it showed lifetime risk at 70.5%. My husband is a Scientist, geneticist. We ran it over and over and it showed the same. We think she accidentally did not put in my diagnosis of ADH because that alone, without the density had me at 38.9%.

I have sent a letter asking her to rerun those numbers. I will be interested to see what she says.

Utahmom

I hope you are doing well now. I don't like the divets. I had those on the first biopsy on the other breast because they took so much out.

mammalou

wow, I just ran mine using the ibis model. I was surprised how high itcame out. It seems breast density and adh seem to really hike it up. I wonder how high it goes if you also add in already having breast cancer in other breast.

MaryScout

Hi Utahmom,

They had me walking the halls in the hospital the day after surgery. That was a little tough -- my stomach felt so tight. During the next week I would try to slowly walk, the next week I was slowly on an elliptical machine, and the third week was doing about a mile and a half on the elliptical at the gym. Throughout this I wouldn't pick up things that weight more than about 10 pounds. At about 6 weeks I slowly started increasing the weight. On our scuba trip we did shore diving, so basically it involves strapping a heavy tank to your back and wading into the ocean. The buoyancy of the water made this easy. I let my husband carry the tanks! ha! Sure hope this helps.

Utahmom

Just to clarify, you used your arms on the elliptical when you started? Just trying to see how this will work with range of motion issues. I have an 8 year old at 52 and we are an active little family.

Utahmom

Did anyone have to have blood transfusions with mastectomy and diep surgery?

MaryScout

Hi Utahmom,

When I first started out on the elliptical I didn't use my arms -- just walked. About 2 1/2 weeks out I started using my arms a little bit. The main thing I tried to avoid was heavy lifting. I think this was more about my abdominal incision than anything else. But I was able to wash my hair, etc., so moving my arms wasn't a biggie for me. As for your question about blood transfusions, I didn't have one, but I'm speaking only for myself on this one. I'm not sure what the stats are on that.

Sure hope this helps!

mbo

Utahmom

Thank you. I wondered if that was something you bank your blood for or if it was necessary.

Do you recall how long the total two surgeries lasted?

Khakitag

I was Dx with ADH in Dec but it was upgraded to DCIS intermediate grade, 9mm upon excision in January. I was so convinced I was the 80% who remained just ADH. It really deflated me. Now the DCIS is gone and it’s a waiting game much like ADH.

KayaRose

I had microcalcifications show up in my right breast on a mammogram in 1992. I had an surgical biopsy that in today's terms would be called a lumpectomy. It was diagnosed as atypical lobular hyperplasia (ALH). At that time there really were no treatment options available except a prophylactic mastectomy which was not recommended or watch carefully. I had mammograms every six months for the next couple of years. After that the insurance company said they were no longer necessary and would only pay for annual mammograms.

In 2014, I was diagnosed with ILC in my left breast and lymph node. I went through chemo, mastectomy and radiation. I currently am taking anastrozole. After having several scares with the remaining breast (ultra sounds, MRIs, etc.) I decided to have the right breast removed. I chose not to have any reconstruction. Must say, I've never regretted having both breasts removed. It's a relief not to have to go through screenings all the time.

All I can say is take a diagnosis of ALH or ADH very seriously. Good luck to all.

Utahmom

khakitag,

I am so sorry to hear this. I was dx in October 2019 but have yet to have it removed because when I met with my BS, he was talking about the standard protocol of lumpectomy and 5 year of tamoxifen, which I immediately said, "No" to. He had said it that was my choice, then I need to realize that the chances of it coming back are just a matter of time before it comes back but it might come back as DCIS, if I was lucky, if not, then it would be Invasive or Infiltrating. It was adamant in his experience of 25 years that if I chose not to take the meds to help reduce the risk, then it will show back up based on the fact that I started in 2014 with proliferative but benign typical hyperplasia and have now progressed to ADH in the other breast. He said the real issue is that with hyperplasia both breasts can be affected. I am 52, premenopausal, 8 year child at 43, breast density at extremely dense (birads 4 on density), 2 aunts and 3 1st cousins. Lots of cancer in my family on both sides. Mom had stage IV cancer two times. I am leaning to possibly doing the PBMX because I do not think I can live through the every 6 months monitoring. The friends that have had cancer say they would have gone that route if they could have but most did not have a choice. I was speaking with a friend yesterday and she commented that right now, I have a choice. In the future, I may not have a choice.

MaryScout

Hi Utahmom,

My first surgery was 7 1/2 hours long, and I think my second one was around 5 hours long or thereabout. In the first I had both the mastectomies and the diep, in the second one they did some additional abdominal repairs, a little lipo on my muffin tops, and they contured my breasts. DM me if you want pre-op, post-phase 1 pics, and post-phase 2. Honestly, my abs look so much better I can't believe it. My breasts look basically the same -- maybe a bit more perky. Hope this helps!

Mary

Utahmom

Kayarose,

God bless you, sweet friend. I am so sorry that you are fighting this beast. I am grateful for you sharing your truth with me.

I am praying for you.I have had some dismiss the diagnosis as nothing.

Utahmom

Met with BC Oncologist today and BC Genetic Counselor. They said based on history, family etc. They assessed my risk at 57%.

Utahmom

Utahmom

VeeHow

I thought that once my Breast Surgeon removed my ADH (found with 2 TDH only on an MRI) I would be done. Maybe more MRIs in the future but that was about it. Done. I guess I was far off the mark. I am only seeing a Breast Surgeon not a team of any sort. I'm not sure where I should go from here. I have my post-op appointment next week. I guess I'll find out at least a little more then. I would like to know how high my risk is.

CasM

HI VeeHow

Did you get your path report and only have ADH? If so, that is good news. Now onto maintenance and prevention mode. My breast surgeon has me on alternating 3Dmamm/MRI every 6 months and 2 clinical breast exams a year, which I believe normal protocol for those of us with a higher risk of BC. The BS also wanted to put me on tamoxifen and/or a aromatase inhibitor, however, I refused. These meds are supposed to help reduce your risk but have side effects that I did not want to endure. When researching MRIs and the issues with the contrast dye, I found that using a facility with a 3T machine and Dotarem contrast dye is a better breast MRI for detection. Dotarem is macrocyclic which if you are going to get contrast is the better one to not contract with Gadolinium MRI Contrast Toxicity. Jury is still out whether contrast dye is safe, but I have been told the benefit is worth the risk .?! When I schedule my MRI I increase my fermented chlorella and turmeric supplements, the day of the MRI I start on organic activated bamboo charcoal to attempt to chelate the contrast. DRINK LOTS of water to flush the kidneys too. I continue the chlorella/turmeric/charcoal/water for a few weeks after. Cautionary note with activated charcoal - take it 1-2 hours before and after you eat. NOTE: This is my protocol that I came up with after researching multiple medical websites and medical podcasts. I am not a medical doctor.

I also changed my lifestyle dramatically and removed as much xenoestrogens ( any natural or synthetic compound introduced into the body that mimics the effects of estrogen or promotes its production) from my life as I identified them. I started using essential oils, castor oil packs, taking a regimen of supplements, and cleaned up my nutrition to try and prevent BC. I purchased multiple books to read - Dr. Kristi Funk's - Breast: The Owners Manual, Heal Breast Cancer Naturally: 7 Essential Steps to Beating Breast Cancer by Dr. Véronique Desaulniers and multiple others. I also listen(ed) to multiple podcasts to become educated. My husband thinks I am nuts a little, but, this was a big wake-up call that my lifestyle wasn't the best and needed a re-vamp.

There are members in this community that have went onto get BC after an excision biopsy but as we all know that we are so individualized it is hard to predict who will or won't get BC. That is why I am in prevention mode, even if I do get BC down the road. My lifestyle changes and educating myself, I believe, have only made me healthier and more knowledgeable.

VeeHow

Thanks for all the info. No path yet. I see the surgeon March 17th, hopefully she’ll have the results then. Yes, just one ADH. I had a vacuum assisted biopsy done so I’m hopeful that with all the samples it takes they got the diagnosis right.

pattimay22

I read with interest the chart Lea7777 posted (Two charts, below, from a Mayo and Vanderbilt study show the risks). If i'm understanding correctly the chart is backed up by studying those patients found on to have a larger area of ADH will have a higher breast cancer risk in the future?

In 2009 my mammo showed microcalcifiications which led me to a vacuum assisted stereo core biopsy. I was diagnosed then with focally severe ADH and ALH to lesser extent after surgical excision. A few months later followup Mri showed still an area of irregular heterogeneous clumped enhancement posterior and superior to the biopsy cavity. So another core biopsy.Right breast was fibroadenoma, sclerosing Adenosis, columnar cell change etc. Left breast columnar cell change with atypia. However, NOT ADH was stated on biopsy report.

In 2010 eight months after surgery Mri the clumped enhancement lesion left breast is largely unchanged post-excision and a repeat surgical excision is recommended on report.

My surgeon said he cannot take out anymore breast tissue. I've had Mri's for several years alternating mammos. My last MRI two years ago findings were moderate background parenchymal enhancement. However, segmental clumped non mass enhancement with type 1 kinetics upper outer quadrant left breast continues to decrease in conspicuity since prior studies.

So this all started at age 51 and now I'm 62. My surgeon isn't happy but I just could no longer stand those MRI's. I would get a migraine afterwards and now research shows the dye can be absorbed in tissue and stay .So this scared me.

Now my question is does the "SEVERE ADH" mean the number of foci which puts me at a higher risk then if it was a smaller area of ADH. Or does severe refer to how atypical the cells were? My excisional biopsy was sent out to another pathologist and the comment was : The cytologic and architectural changes are not felt to be severe enough to warrant a definitive diagnosis of DCIS .

I'm just confused now if I should start going for MRI's again if my odds of getting breast cancer are higher due to the severity of my ADH.

Lea7777

'Now my question is does the "SEVERE ADH" mean the number of foci which puts me at a higher risk then if it was a smaller area of ADH. Or does severe refer to how atypical the cells were? My excisional biopsy was sent out to another pathologist and the comment was : The cytologic and architectural changes are not felt to be severe enough to warrant a definitive diagnosis of DCIS .'

I believe the severe refers to how atypical the cells are. I have seen severe adh described as borderline DCIS. That would mesh with the comment not severe enough for DCIS.

"So this all started at age 51 and now I'm 62. My surgeon isn't happy but I just could no longer stand those MRI's." Here's something you might look into. The last time I saw my breast surgeon I asked what the latest advancement was. She said shorter MRIs, in the range of 15-20 minutes. That might help with the migraines. The dye issue is not affected by the duration of the MRI, but you'd be in the machine a shorter time.

You can ask what type of dye is used. Some have less of a tendency to be absorbed than others.

Best wishes in your decision.

pattimay22

Lea7777 thank you so much for reply . I know that the last MRI I had was two years ago. It was definitely shorter then all the ones I had from 2010 forward. The last one I had my headphones to block out that sound fell off the one ear. I wasn't even up to the intravenous part yet. I started to get a panic attack and pushed the button. She was new and was annoyed and warned if I moved I'd have to start all over again. I just can't see doing these MRI's for the rest of my life. I've had at least 10 already. Also the last two indicated as I wrote that the area in question after the surgical excision is less conspicuous.

I'm just confused still of why my surgeon says I'm such a high risk. No breast cancer in family.I Guess the study you posted is the reason in that I was borderline DCIS. But is even having had DCIS put you at even higher risk for subsequent breast cancer? I know this is unscientific but I always felt that the bad menopause I was going through at 50 made my breast cells go crazy and now everything has settled down and hence the clear mammos with no calcifications and clear MRI. Even though my surgeon says as you age your odds go up for developing breast cancer.

So has anyone on this board have had the same as me being micro calcifications on mammo leading to more ADH/DCIS or invasive breast cancer many years later?

VeeHow

I’m coming back to this thread when so much has changed and already been done, but is it ever completely done? The ADH turned out to be ADH and what most other pathologist said was IDC. My surgeon sent it out for a second opinion and I had it sent for a third opinion. I had the second lumpectomy, clear margins - good, partial (accelerated?) breast radiation then they pushed me to start taking Tamoxifen which, since I am high risk, they said was essential. With the Covid 19 Virus scare everything happened so quick. Not much time to think about it or get a second opinion. Now I have time to have a second opinion. Should I even be concerned about the other usual ductal hyperplasias, one in the same breast and one in the opposite breast? I’m 57, have dense breasts and am not in great shape. I’m feeling a bit nervous. I am finally going to see an oncologist who is supposed to be very highly regarded in this field. I’m not even sure what to ask but am going to try to get a list of some good questions and recommendations for other cancer clinics, surgeons and oncologists. It’s kind of a fluke I got the MRI needed to find the ADH and then the cancer, now I want to be prepared for my next screening and further treatment and what might lie ahead. Any advice? Hope reading a bit of my journey helps others. Best wishes everyone

MelissaDallas

Veehow, I think you should copy and repost your question to one of the IDC or recurrence forums, not “high risk.” If you have IDC you are no longer just “ high risk” when you have invasive cancer

cookie54

So I was dx with ADH in 2007 after having excisional biopsy. Was followed with alternating mammo's and MRI's every 6 mos with clinical exam once a year. Was in the 28% bracket of risk for breast cancer. I had very dense breasts so I had a total of 8 biopsies over 9 years. Year 9 which was 2016 I was diagnosed with IDC, high grade triple negative breast ca. For me the use of tamoxifen would have been useless due to the TNBC diagnosis.

Honestly after having so many negative biopsies after the first ADH I was somewhat surprised to be diagnosed. Had b/l mastectomy with reconstruction and chemo.

Fast foward about three and a half years here I am again! Recurrence of TNBC in my axilla and chest wall. Just started chemo / immunotherapy and will be having surgery and radiation to follow .

So the most important thing is to be followed closely with more than one type of imaging. I am a professional in radiology and know first hand certain things will show up on mammo that are not seen on MR and vice versa. So follow your gut and be your own advocate , push for the best care possible!

BlueGirlRedState

cookie54 - any thought/opinioins/suggestions for imaging for those who have had a bilateral. This was something I was constantly asking my DR,and it seems like it just isnt part of the "standard of care", risks from radiation etc. So I was quite depressed when after a lumpectomy/radiaion/tamoxifen in 2009, dense lumly left, normal right; chemo, bilateral, tamoxfen 2016; I was once again diagnosed in 2019 with BC, this time R-axilla - symptom was a very swollen right arm. PET indicated no metastasis. Taking Ibrance and Arimidex, with CT every 3 months or so, tumor shrunk from 2.5 cm to 7 mm. I asked if it shrinks it oblivion, would a PET be used to monitor for any metastasis/rogue cells etc. I was told no. So it seems like there is no way to monitor and catch recurrence or new cancers when small.

cookie54

For us ladies who have had b/l mastectomy's that is the end of the road for dedicated breast imaging unless it's an MR to monitor for implant rupture. Yes, PET is used for staging and to rule out metastasis. Also CT Chest/Abdomen & Pelvis with contrast is used for monitoring, however you can't see rogue cells. CT can detect small masses , metastasis, lung nodules, bone mets etc. Risk outweighs the measure I guess as far as radiation exposure depends on if you are high risk.

Happy to hear your mass responded to therapy with diminishing size! Great news! Sounds like you are being imaged pretty frequently with CT so if something does arise it will be caught early on scan. Love, hugs and good wishes as you continue your journey.

pattimay22

Thank you for posting cookie54. You have opened my eyes to the importance of the yearly MRI. Your journey in the beginning sounds like mine after ADH. So I wrote in above post the other day that I gave up my MRI's two years ago even though my surgeon was not happy. I was led into false complatency after so many years of clean mammo's and Mri's.Will get the MRI prescription at my next breast surgeon appointment for my breast palpitation exam.

cookie54

pattimay22 your very welcome, so glad you have decided to resume MR! Be well....