New here - Getting ready for surgery and nervous!!

Options
Ccsmom
Ccsmom Member Posts: 6
edited June 2014 in High Risk for Breast Cancer

Hello! I've been reading posts here for a few days and it's so comforting to see answers to questions and see that I'm not alone!

I'm extremely healthy and almost 51 yo. I've never had any issues with my mammogram. A few wks ago, they called me back for more views due to micro calcifications. The 2nd set of mammograms  was very painful as the location is close to my armpit and rib cage. After viewing these, the radiologist said I really needed a biopsy. They weren't sure they could get it w/ needle due to location, but they got it on first attempt. the calcifications were benign but they found I have ALH, which means I have a higher risk of breast cancer and now need surgery to rule out cancer in cells surrounding this area. I have very dense breasts and will need to be on a high risk program from now on. 

I'm scheduled for the surgery in 1 1/2 weeks. I'm very scared and worried that even if it's not cancer now, I'll have to go through this extreme stress and worry every six months for the rest of my life. 

Does anyone else have this fear and how do you stay positive each time you go through these tests? Also, doesn't it seem that I should have an MRI prior to the surgery since I have dense breast tissue? Or should I just get through this and wait six months for an MRI? It just seems that they should check everything before doing a surgery if it's difficult to see on the mammogram.

Any advice is most appreciated! I'm sure my doctors absolutely know what they're doing and I'm really overthinking this because I'm worried!

Thank you!

· Share on FacebookShare on Twitter

Comments

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited April 2014

    Hi Ccsmom - The high risk screening can be very onerous. When my biopsy found ALH and ADH by BS sent me to a genetic counselor. Together we explored all the options including taking Tamoxifen, and alternating MRIs and Mammo's OR a preventive bilateral mastectomy. He determined my lifetime risk of BC to be about 50%. It might be useful for you to have them put a number on your risk.  IMHO I would think a MRI would be. very good idea. I had one pre-biopsy to make sure there was nothing else going on.  

    Be sure to ask for a full copy of your reports. You and your docs are a team, but you only have one patient - you! 

    There are many threads on this site related to ALH.  You can use the search feature to find them.  Wishing you a completely B9 surgery.

    · Share on FacebookShare on Twitter
  • Ccsmom
    Ccsmom Member Posts: 6
    edited April 2014

    farmerlucy,

    Thank you for your advice...I appreciate it so much. 

    I think your route of visiting with a genetic counselor is very good advice. I seriously feel the need to know what that risk number is for me. I'm not a candidate for Tamoxifen as the only other medical problem I had was a puliminary embolism, so this medication is not an option. 

    I will definitely ask about the MRI. 

    These tests and terms are all so new to me and so overwhelming, so thank you again. It helps so much to be able to ask questions and get information from generous women who are willing to share their experience and information. 

    Ccsmom

    · Share on FacebookShare on Twitter
  • mjm1
    mjm1 Member Posts: 139
    edited April 2014

    Is ultrasound an option? That's what they always use on me because of youngish age + dense tissue. And it's more comfortable than a mammo.

    Good luck with your surgery & results. As farmer lucy said, there's lots of threads from others facing the stress of 6 monthly testing. Best Wishes!

    · Share on FacebookShare on Twitter
  • Ccsmom
    Ccsmom Member Posts: 6
    edited April 2014

    hi mjm1,

    Thank you for your advice and kind words. I appreciate it so much!

    I forgot to mention that I had an ultrasound of the area. There was no mass...just the micro calcifications, then the ALH finding on the biopsy. I will ask about further u/s tho as I agree it would most certainly be more comfortable than further mammograms, which, I understand don't always show everything for women with dense tissue. 

    One other question, does anyone know how long the recovery takes for the surgery? It's just to remove more tissue surrounding the biopsy area. My surgery is set for a Friday, so I wonder if I can go back to work on Monday? For my biopsy, it took over two weeks before I could wear a regular bra again as the biopsy was on the very high right side and very painful for weeks.

    Thanks again! C&CsMom 

    · Share on FacebookShare on Twitter
  • mjm1
    mjm1 Member Posts: 139
    edited April 2014

    What sort of biopsy are you having - since you say surgery, I'm thinking an excision biopsy to remove the lump? Most ladies seem to recover from these pretty well, but you may well be feeling the effects of the general anaesthetic a bit on Monday. 

    Personally, I was surprised how long my recovery took - had an excisional done 2.5 weeks ago, and was very fatigued and sore for at least 2 weeks - only just starting to feel capable of concentrating again, and I still eye up a full 2L bottle of milk warily before I lift it. I think it depends on how much tissue they need to take, where etc. My surgeon said 6 weeks to be 80% recovered. But I think I'm a bad example:)

    · Share on FacebookShare on Twitter
  • Ccsmom
    Ccsmom Member Posts: 6
    edited April 2014

    Hi mjm1,

    Thank you for your very helpful information! 

    I'm not really sure what this biopsy is called,as this is all very new to me. I know there is not a mass, but atypical cells where the biopsy was done. They're taking a small amount of tissue from this area to assure there is nothing worse going on, is my understanding. My biopsy recovery took longer than the doctors said, so I figured this will probably be a bit longer as well...and from your experience it sounds like it will!

    Thanks so much!!

    · Share on FacebookShare on Twitter
  • mjm1
    mjm1 Member Posts: 139
    edited April 2014

    If you have the option of taking a little extra time off or keeping your options open, I'd do that.

    Was it the Friday we've just had, or this week that you've got your surgery? (the international time differences confuse me!). Hope it goes/went well!

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2014

    ccsmom----my excisional biopsy was done as a day procedure--I was in at 6:30, home by 2:00. I had the wire localization first, then an IV put in, then off to the OR, I had conscious sedation.  I woke up in the recovery room wrapped snugly in a chest binder that I had to keep on for 2 days. Then I could remove and shower with just the steri strips remaining. I took it easy for a few days and was back to my normal activities in less than a week. I just padded the area with gauze pads, so it wouldn't be so uncomfortable. I have LCIS  (a step further along the bc spectrum with double the risk of ALH)  and my risk is further elevated by my family history of bc (mom had ILC), so tamoxifen was pretty much a given for me.  Do you have any family history of bc, especially in a primary relative? If not, then ALH alone is more of a moderate risk (if yes, then it becomes more of a higher risk like LCIS). If you can't  take tamox, you should at least consider high risk surveillance including MRIs.

    anne

    · Share on FacebookShare on Twitter
  • Ccsmom
    Ccsmom Member Posts: 6
    edited April 2014

    Hi awb!

    Thank you for the information you shared with me. My surgery is tomorrow. I'm very nervous about the wire and also about whether the cells will be b9 or not. I planned to take it easy for the weekend and I'm hoping to go back to work on Monday or Tuesday. 

    I don't have any direct relatives diagnosed with bc, so that is a positive in my favor!

    Thank you so much to everyone who shared your experience and information with me. I will post to let you all know how it goes.

    Take care, ccsmom

    · Share on FacebookShare on Twitter
  • Ccsmom
    Ccsmom Member Posts: 6
    edited April 2014

    Hello Everyone,

    I had my surgery last Friday. Everything went fine. The most painful part was the numbing. 

    I heard from the doctor yesterday that the pathology is negative for breast cancer! YEAH! I'm so incredibly relieved. They found more atypical cells putting me at higher risk for future breast cancer but as long as I'm vigilant with follow up, I know they'll catch it early, IF it develops. 

    I have my post operative follow up next week. I have been very woozy following the anesthesia...hoping that goes away soon and some pain where the incision is located. Other than that, I'm doing just fine.

    Thank you so much for all of your support and shared knowledge! It's been an incredible help to me going through this as a newbie to all of these terms and such.

    All the best, ccsmom

    · Share on FacebookShare on Twitter

Categories