Excisional Biopsy Thursday and Really Nervous

there is no rush to get the genetic testing, or to see the oncologist, or to start on tamoxifen or evista. Take one step at a time. Have the excisional biopsy first and wait for the results. My wire localization was not painful, they numbed me up really well, it was really just pressure and tugging. I didn't have any Valium or anything beforehand; the hardest part of it really was just sitting so still for so long with my head turned to one side. Results are "upgraded" to DCIS or invasive bc in 15-30% of cases; however, that means that in 70-85% of cases, nothing more serious is found. I was diagnosed with LCIS 12 years ago, I also have family history of bc (my mom had ILC). I saw the oncologist about a month after my lumpectomy and started on the tamoxifen. I am just now going to have genetic testing in Sept, after all these years. I do alternating mammos with MRIs every 6 months, with breast exams on the opposite 6 months, so I'm essentially "seen" by some method every 3-4 months. Fortunately, I haven't needed any further biopsies in all these years. Not a choice for all, but it works for me for now , anyway. If anything more serious were to be found, I would always reconsider the option of PBMs. Praying you get good benign results soon.

anne

Girl: I did have wire placement but did not have a Valium beforehand; the anti-anxiety med's not mandatory, but that said, don't feel shy about asking for something! I'd managed the MRIs and needle biopsy OK, but everyone's anxiety levels are different, and everyone's response to the stress of all the testing.

Hope you get some good answers about the LCIS; my head's still in a whirl about the DCIS and all its implications.

girl53------I am 58 now, was diagnosed at 46. My original oncologist (now retired) didn't push the genetic testing, felt I was low risk for BRCA. (no red flags: no ovarian cancer or male breast cancer in family, no ashkenazi jewish heritage, bc in only one primary relative (my mom) and not a young age (she was 57), etc). My 2nd oncologist (left for another practice) and my new 3rd oncologist feel I should have genetic testing. (my mom and mgm both had colon cancer; my mggm had bilateral mastectomies). So I've been dragging my feet, and now I'm finally going to do it. If it is negative (which, of course, I'm praying for), not a whole lot changes. I still remain high risk and continue with my preventative meds and close surviellance. If it is positive, then it's a real game changer. Not just for me (I would have the PBM surgery), but would have implications for my 2 sisters and my daughter.

yes, LCIS confers high risk on both sides. It's considered a bilateral disease, thought to be multicentric and multifocal. Meaning, if you have it in one spot, you most likely have it in many spots throughout both breasts. (the risk is the same, whether you have it found in one spot or many.) If you get invasive bc on one side, yes, the other side is still at high risk for invasive bc due to the LCIS. I like the alternating schedule of mammos, MRIs and breast exams, so there isn't as much time elapsed between visits; it gives me more peace of mind being watch so closely, so if anything is there, hopefully it will be found early when it is more easily treatable.

anne

I think that the wine idea is great.  Have a glass today and another tomorrow for "Wine Wednesday" which will become "Wonderful Wednesday". lol

I would recommend having the genetic testing as quickly as you can.  The reason being that since you have at least 3 indicators (I am not using the correct word, sorry), your insurance company should pay for the testing.  There are a whole panel of genetic tests, not just the BRCA 1 & 2 genes. The reason that I am recommending that you have the genetic tests immediately is because it takes a very long time for the results to come back.  It may also take a long time for you to arrange and appointment for the genetic testing.  You need to know the results because it may affect your treatment.

I had pleomorphic invasive lobular carcinoma and 2 locations of pleomorphic LCIS in the same breast.  The second area of LCIS and the invasive tubular carcinoma were discovered after surgery.  I had a double lumpectomy and radiation in my left breast. My right breast was fine.  However, if my genetic testing came back positive, I would  have had a double mastectomy.  I went to M.D. Anderson Cancer Center in Texas (I live in Florida) and my genetic testing results did not come back until after my surgery and pathology reports came back.  I was on my way back to Florida when I found out the results.  Luckily, it was negative but if I were positive I would rather have waited and had one surgery rather than the lumpectomy surgery and then a mastectomy surgery.

One and 1/2 months is standard.  That being said, it feels like 1 and 1/2 years.  The waiting is awful and very stressful.

I did not have a wire procedure.  They did a "radioactive seed procedure" to identify the areas for my double lumpectomies.  Therefore, I cannot comment.

I was diagnosed last summer. I had a diagnostic mammogram, sonogram, and MRI after 6 months.  Unfortunately, they found 2 suspicious areas.  I had an MRI guided biopsy in May 2015 which turned out benign with 7 benign findings.  Nothing to worry about.  The other area could not be biopsied so I am on a 6 month wait and watch protocol.  I will have a diagnostic mammogram, sonogram, and MRI in November 2015 due to the suspicious area.  I'll know more then.  It is probably benign.  It is a 1.5 cm linear non-mass enhancement with rapid washin washout kinetics. 

If it weren't for the 2 suspicious areas, I would be on an alternating diagnostic 3d Mammo and sono at 6 months and then the MRI at the next 6 month interval. 

I am taking Arimidex/Anastrazole.  I had the oophorectomy and I took zoladex for 3 months  prior to the oophorectomy because I needed to be medically induced into menopause so that I could take the aromatase inhibitor.  I was 49 at diagnosis so my 50th birthday present (the day after I turned 50) was starting the process of being medically induced into  menopause.  Happy Birthday to me!  I had absolutely no perimenopausal or menopausal symptoms at all at the time that I was diagnosed.  In fact, it took two cycles of the zoladex to suppress my ovaries.

Good luck.  I wish all of you the best.

The upside to my situation is that I now have gorgeous breasts after surgery.  My plastic surgeon was amazing.  He did a breast reduction and a breat lift so that I would not be deformed.  (My bs had to remove about 12 cm of breast tissue so I had to have plastic surgery.  My nipples would not have been even and I would have had different cup sizes.) Plastic surgery was a real benefit arising from bc.  I am really lucky though.  It is amazing that I was diagnosed at all.  My doctors are fantastic and they all saved my life.  

You will get through this.  I am sending you positive thoughts and prayers.  I am sending positive vibes to everyone else.

I go to a support group and I am now doing dragon boat racing on the breast cancer survivor team.  I feel that I was extraordinarily lucky.  I survived and I am fine now.   It has been a whirlwind year.

Dear Girl:

Good luck tomorrow and you will be in my prayers. 

I'm just checking.  Are you engaging in "Wine Wednesday"  today?  I think that you will be ok until Midnight because at that time you will have to fast.  lol.

I wish you the best and I am trying to make you laugh to take the pressure and anxiety away.

Let us know how it goes.

Hi Girl53,

I am 41 and was diagnosed with LCIS last fall. I had a lumpectomy in November, along with the wire placement. I found the lumpectomy surgery to be easier than the stereotactic core biopsy, actually! The lumpectomy was easy and I needed very little pain medication after. The wire placement was weird, but not too painful -- it was quick. The worse part of it was having to contort myself to the mammogram machine as I don't have a lot of breast to work with! The way I had to stand ended up making me feel lightheaded and I had to sit for a few minutes before we could finish the procedure. But, it really wasn't bad. I did not take valium or anything in advance of the procedure.

They found nothing further on my lumpectomy....and a year later, I just had my mammogram yesterday and all is clear! So, take a deep breath and know the stats are on your side.

I am on a 5-year course of tamoxifen, and aside from a few hot flashes and a bit of thinning hair, I'm tolerating it really well. While it's stressful to have LCIS and try to navigate it where there often aren't definitive answers or recommendations for treatment, I feel grateful that I know about it and am now doing more to reduce my risk and get screenings to catch any issues early. I feel like it's the right course for me and I hope you are able to find that comfort as you go through this journey as well.

I will be thinking about you tomorrow and wishing you smooth sailing through the procedure and recovery!

Hugs to you!

girl53--glad to hear things went well and that you are home again. I'm so glad they let me keep on my own underwear !

anne

I'm pleased to hear everything went well! They made me wear those crazy undies too! Please let us know the results when you get them. Thinking of you and hoping the healing is fast.

I am allergic to the adhesive on bandages and on tape.  The markers on mammo's cause a rash for me too.   After any procedure, I get a horrific rash.  The only tape that works for me is a clear tape.  Even the paper tape does not work. 

You may have an allergy to the iodine, the adhesive, or both.

Good luck.

Ice is a great solution.  Once you start scratching you will feel more itchy.  It is a vicous cycle.  Good luck with the waiting and with the results.

Girl: I hope I can at least allay some of your fears! Much of my answer is based on my own experience, somewhat different from yours. Your experience will almost certainly vary in some points.

The surgeon will go over your pathology report with you--a loose translation is "Yes, she will tell you whether or not you have breast cancer." There are a lot of benign conditions that look like cancer, and all too often doctors can't know until they remove the whatever it is. Also several things that make radiologists and surgeons go all squinty-eyed and suspicious like, such as ALH/ADH and microcalcifications.

Make sure you get a copy of your pathology report! Getting brain freeze during the consultation is both common and understandable. Looking the bleep things over at your leisure, over a glass of something relaxing, is far less overwhelming.

As for who does what, I think the BS will serve briefly as quarterback in that she will get the ball rolling in re. the next stage of treatment, should there be one: set you up with appointments for the medical or radiation oncologists, say. Keep in mind it's possible that things will stop here! but brace yourself for further treatment. Certainly ask your surgeon your questions, starting with the strictly medical ones such as testing. Whether or not you do need further treatment, ask the surgeon about a nurse navigator or social worker associated with the local health network. Many-most places do have one or more people whose job it is solely to steer overwhelmed/overwrought newly diagnosed cancer patients through this morass.

I've met both for my local system, and they were lovely. It's their job to help with insurance issues, arranging appointments with psychologists, pointing you to support groups, suggesting where to get aluminum-free deodorant, child care, financial issues....all the non-medical things people face in real life.

Does that help?

Either way, DO come back with the results of your surgery! Waiting is the worst part...treatment's hardly a walk in the park, but this leaves our minds free to roam the galloping whatifs.