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Help with Abbreviations

Topic: New to this and already considering PBMX

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Apr 19, 2019 07:14AM

MaryScout wrote:

Hello All!

My name is Mary, and I was just diagnosed with ADH and a small foci of ALH. I'm 54 with a lot of history with cancer -- cervical at age 34 (hysterectomy, no radiation), and then 3 different melanomas. I don't have any family history of breast cancer, but my mom died at age 41 of lung cancer, and her mother at about age 50 of suicide (I know, sounds so terrible -- I never knew her).

I guess I know by now how the waiting game feels, and I am having trouble seeing myself coping with all of the tests and waiting for results in my future. I've had a fibroadenoma removed, and I have dense breasts. So... I'm thinking of just going for the PBMX and moving on while I'm young(er!) and have time. Any thoughts on this? Maybe just being nervous here and am over-thinking it, but wow, I've had a lot of cancer and I've lived the anxiety that goes with it.

Have any of you here had these thoughts? I live in Pennsylvania, so am kind of thinking of surgeons to travel to. If you have any thoughts on that or any of these things I'm thinking of, I would love to hear! TY to everyone.

From your newbie,

Mary

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Apr 19, 2019 01:15PM Lea7777 wrote:

Hello Mary and it is good you have found this site after your diagnosis. I am sorry you find yourself in this situation.

One piece of advice a Nurse Practitioner gave me for a diagnosis just a little more severe than yours, but without any cancer history, was do the additional screenings (3D mammo, and MRI alternatiing every 6 months) for at least one year and see how you feel about things. The "nervous over-thinking" you describe will have a year to settle. You may feel absolutely no different than you do now, but you'll have a year to research, talk to experts, learn more, and get over the shock of your diagnosis. Also what you describe as "nervous over-thinking" is also taking your situation seriously and doing what you can to understand your options.

If you have not been counseled on the various drugs to reduce your breast cancer risk by half (or more) do consider that. Since you have had a hysterectomy, there are 5 drug options for you. You may want to use the year of waiting to try one or more of the drugs. If one has unacceptable side effects, you can give another a try. If none of them are for you, then you'll have that important piece of information, too, after a year, to help inform you of what you wish to do going forward.

In that year, you can talk to some surgeons without a rush and get their take. (Sorry I have no references for you.)

Best wishes.



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Apr 19, 2019 01:30PM Mavericksmom wrote:

I'm from PA.  I live outside of Philadelphia and there are four hospitals (5 if you consider Cancer Centers of America, I don't know that one other than commercials so I was treated at one of the others I am listing here.)  Jefferson Hospital, University of Pennsylvania, and Fox Chase Cancer Center in Phila. and MD Anderson, just across the river at Cooper Medical Center in Camden.

If you are in the middle of the state, I know Hershey Medical Center  and Lancaster General  are excellent. 

Pittsburg has to have some great cancer hospitals or depts. in hospitals, but I don't know what they are because I am on the east end of PA. 

I hope this helps. Wishing you the best.

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Apr 19, 2019 08:12PM alto wrote:

Under Community Connections, there is a Member Matchup & Local Support Group topic that may help you connect with others in your area

Diagnosed at 42. Had symptoms of Paget's for years prior to positive biopsy. No Tamox because low% ER. Dx 11/2/2018, Paget's, Right, Stage 0, Grade 3, ER-/PR-, HER2+ (IHC) Surgery 11/10/2018 Lumpectomy: Right Dx 11/29/2018, DCIS/Paget's, Right, 1cm, Stage 0, Grade 3, ER-/PR- Surgery 12/18/2018 Lumpectomy: Right; Lymph node removal: Sentinel Dx 12/21/2018, DCIS, Right, 2cm, Stage 0, Grade 3, 0/2 nodes, ER-/PR- Surgery 1/15/2019 Mastectomy: Right
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Apr 19, 2019 09:12PM MelissaDallas wrote:

I second what Lea said. Give it some time. I was freaked out at first, partly by this board. Be aware that a disproportionate number of women who have remained active here are the ones who did PBX. In reality, most women don’t and the majority of women with LCIS do not go on to get cancer.

I just do monitoring

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Apr 20, 2019 08:59AM Northerngirl485 wrote:

I was diagnosed in January with ALH and LCIS and it also hit me hard. My first reaction was to want a bilateral mastectomy as my thoughts were why keep something that would try and kill me. I am part of the watch and wait club with having mammogram then MRI alternating every 6 months. At first this also was not acceptable to me.

I have my first 6 month mammogram next month and I am very nervous. But in saying this I am glad that I gave my mind/emotions/thoughts some time to let my diagnosis set in and allow me to “think” things through. With my diagnosis I have time to decide what is best for me, which may be very different from someone else. There are risks behind having surgery which are life changing as well risks that I could develop a more serious cancer.

I have decided to wait for my first MRI results then decide what is best for me. For me I feel it is best to take the time to research and talk to professionals about my diagnosis and not let my emotions of being literally scared out of my mind make my descions for me.

My grandmothers both died of horrible cancer, I have higher risks. But not everyone with ALH, LCIS develop cancer. In saying this I still have a bad feeling about myself which makes me still want to go ahead with the mastectomy. But I do feel so much better in my decision to at least wait for my first MRI results. I guess what I am trying to say is to take some time and let this all sink in before deciding what’s best for you, don’t let fear drive your decisions

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Apr 20, 2019 10:02AM MaryScout wrote:

I want to thank everyone so much for the measured responses. You are awesome!

I've had a rough couple of days trying to let this sink in. My first meeting with a doc is scheduled for May 7th, so I'm sure I'll learn a ton then. They are sending me to a breast surgeon, but I'm not sure why there rather than to an onco. I'm guessing it's because they probably want to do some kind of excision biopsy. So, in the meantime, I'm so glad I'm on effexor anyway. I'm pretty sure that I'm post-menopausal, but don't know for sure given my hysterectomy. I was taking estradiol, but about 6 months ago decided on my own to give it up. I'm glad!

Thank you all, again. You're the best. :)

Mary

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May 28, 2019 07:04AM MaryScout wrote:

Hello All,

I thought I would follow up on a thread I started in April when I discovered I had ADH and a small amount of ALH. It took so long for me to be able to get in to see a breast surgeon that I had a ton of time to research and to reflect. I was inclined to do PBMX from the very start because I'm a survivor of multiple other types of cancers and didn't like the idea of close monitoring. I also travel a LOT (much of it overseas), and I thought that the monitoring would make this part of my life pretty hard.

Okay, so I went with my gut and did the PBMX with DIEP reconstruction! I went to the breast center in New Orleans for this, and am now post 2-weeks. I totally know that this isn't for everyone, and I respect, appreciate, and support all the directions that people may take. This was my direction, and I'm super happy with how it turned out. I'm not gonna lie -- it was scary to take the plunge, but the plunge was taken!

Anyhow, just thought I would put this out there in case anyone ever wants to ask anything about this direction. I know I'm a sample of 1, so, for what it's worth. ha ha.

I love this forum. Everyone here is great.

My best,

Mary

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Jul 12, 2019 08:06PM AC1965 wrote:

Hi everyone,

I was diagnosed with DCIS (and ADH) in March, had a lumpectomy April 4th, finished 5.5 weeks of radiation June 7th, and am on my 3rd week of Tamoxifen. My first breast exam/mammo is scheduled for next February due to tissue manipulation during surgery - the surgeon did not want to leave a dent. There will be exams every six months after that. If there is a recurrence I'm not sure if I would just have a lumpectomy again since my mom had invasive BC, but as of now I feel I made the correct decision.

Dx 3/1/2019, DCIS, Right, <1cm, Stage 0, Grade 2, ER+/PR+, HER2- (IHC) Surgery 4/4/2019 Lumpectomy: Right Radiation Therapy Whole-breast: Breast

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