Newly diagnosed, learning all I can

Strawberry8

hello everyone! So I am40, never been pregnant, fresh off a hysterectomy (4 months ago kept my ovaries), and I had my first screening mammo last June. I was called back for magnifications on my right breast for a grouping of microcalcifications. At that time I was BIRADS 3 and recommended to do another diagnostic mammo at 6 months. That mammo happened after Christmas and the radiologist bumped me to BIRADS 4a and recommended a stereotactic biopsy. I did the biopsy this past Monday and got the LCIS diagnosis on Thursday.

I met with my breast surgeon (my OBGYN set me up with him prior to the biopsy) and he wants to do surgery to remove the area of LCIS and recommends 6 month alternating breast exams with ultrasound and mammos. He does not recommend any meds so far and seems to be taking a fairly positive and relaxed approach to this. he did say I am fairly young for this but as far as I am concerned knowledge is power and as long as I can manage the anxiety, I am happy with the plan we have in place.

I have a golf ball size hematoma, so I have to wait 4 weeks till we can schedule the surgery. In that time I would like to learn all I can. I have a second cousin on my moms side who is undergoing radiation right now but that is all of the BC history I have.

How is the recovery for this type of surgery? I work in a lab which requires lots of time on my feet and lifting up to35 lbs several times a day. For my davinci hysterectomy I took 3.5 weeks off which looking back should have been at least a full 4 weeks. Will a long weekend be enough time? The area is on my right outer side of the breast.

leaf

I had hematomas both after my stereotactic biopsies and after my breast excision. My breast turned all sorts of autumnal colors (black, purple, green, yellow, orangey maybe), and those colors took several months to resolve. I didn't notice any lumps, but my excision was rather deep. It didn't cause me any problems, it just looked horrible. Luckily no one had to see my breasts but me and my doctors.

I probably wouldn't have done this had I known what was going to happen beforehand, but I was in the hospital as an outpatient from about 7am to 8pm. It was this long only because my surgeon had a family emergency, so she didn't start the surgery until the afternoon. I work the graveyard shift, so I took off work that night, and went to work the next night. I don't have to lift 35 pounds at work; I usually don't have to lift more than about 10 pounds. The put a Valkyrie-looking breast support on (which was good because it helped prevent jiggling, which hurt for about a week. So I refrained from jogging for about a week.

So I only took off a total of 1 night. If I had 20-20 hindsight, I would probably take an additional night off (to recover from the propofol anesthetic.) I had conscious sedation. I was afraid that if I had breast cancer, I'd need every day of sick leave I had. (Obviously I didn't have anything worse than classic LCIS.) Other people that have posted have taken off a few days.

For me, even though they gave me pain medications, what worked the best for me was tiny ice packs (about 1 inch by 2 inches?) I could put into my bra. (Ice packs were faster for me.) Luckily, there is a freezer at work, so I could bring in a pair, and switch them off with a cold one from the freezer. (Since you work in a lab, there is probably a freezer?)

I'd call your breast surgeon to ask how long you should be off; different surgeons have different opinions, and everyone's situation is different.

I would also ask if you are going to have 'bracketing', which means they insert two 'fish hook' type things so the surgeon can know where to excise. Most people do reasonably with this (I did a survey here), and most people had about a 5 out of 10 pain score for this wire insertion. I hope they do it differently than they did 10 years ago, but I was told before the procedure that I had to promise 'I will not move a muscle.' Then they gave me the equivalent of about 3 seconds with an ice cube, then did the insertion, along with a constant mammogram x about ??1 hour. Apparently, most people do reasonably well with this, but I did not. I also have a history of trauma, so I was at higher risk for pain to begin with. If I have to do another one, I will bring a bell or something that makes noise, so I can shake it to let them know I am in pain. I was unable to tell them I was in pain, because if I told them I was in pain I would cry, and if I cried I'd have to do the whole thing over again. Most people do NOT have this experience, but I did.

Moderators

Hi Strawberry, welcome to Breastcancer.org, although we're sorry that you've had to find this wonderful community!

In addition to the advice and personal experiences you can find here in the discussion boards, you may also want to check out the main Breastcancer.org site's pages on LCIS — Lobular Carcinoma In Situ, which has a wealth of information about this type of diagnosis. Good luck with surgery! Please let us know how it goes.

Best wishes,

The Mods

Strawberry8

Thank you Leaf for such wonderful information on your experiences. I will be having the wire insertion done. I have an appt. with my breast surgeon on 2/25 to make sure this hematoma has subsided. I will be sure to ask all sorts if questions, I am going to try and time the surgery to not interfere with some fairly important things coming up at work.

I do have a freezer and ice packs at work, right next to my desk! I made use of them after my hysterectomy and the day after my stereotactic biopsy. I am very lucky to work with all women which makes these types of medical issues easier to deal with.

Thank you to the Mods as well for the welcome! There is a wonderful wealth of information here that I have only scratched the surface of so far.

:

Strawberry8

So my surgery is scheduled for March 21st. That gives me 3 1/2 weeks. In that time I have some pretty important work things coming up and possibly a trip to go back to my hometown to help my mom who is having back surgery on March 2nd. I am going to do my best to stop googling and worrying about the "what ifs." I have to admit this LCIS thing has been pretty distracting for the past month. Time to get back to living in the moment!

My surgeon said he was glad to have more time because my hematoma has gone down considerably but there is still some blood in the area. He waived the presurgical testing which is nice, less time to take off from work. I am having the wire localization, and the surgery will be under general anaesthesia which I look forward to after the ordeal of the stereotactic biopsy!

I plan to take 1 or 2 days off work since I do have a fairly strenuous job with periodic lifting. While I am sure my boss and coworkers wouldnt care if I came in and sat out of some tasks, I find it hard to do so. So its easier to just rest at home instead of feeling guilty while others work around me.

Strawberry8

Well, I had my surgery this morning. We got to the hospital at 6:30am, the wire localization was not so bad and only took them about 15 minutes. My BS was running late with his first patient but once I got into the OR it took about an hour. The anesthesiologist did a great with a light general and I was awake leaving the OR and not nauseous or too loopy in recovery. My pain was a 5, they gave me a percocet and ice pack which reduced it to a 2. I quickly ate my cookies and water, peed, dressed and left at 2pm.

My husband and I both have been napping for a couple hours as neither of us had more than 2 hours sleep prior to surgery. I will call tomorrow to make my follow up appt. for next week and will hope the wait isn't too long for the report. Fingers crossed the findings only match the stereotactic path report and I can put this behind me for a few months. :

Anonymous

strawberry-----so glad to hear everything went quickly and smoothly with your surgery today. Praying you get good results soon. I remember those days and the waiting, it's the hardest part.

Anne

rosyFL

I would like to suggest you get a second opinion on your pathology slides after you get your results. Best of luck to you for a speedy recovery.

rosy

Strawberry8

Thanks Anne (I am an Anne too)

Thanks Rosy for the suggestion! I know that an entire panel of NYU doctors looks at the slides but I will pursue an additional opinion also.

My steristrips didnt last through my first shower and my husband helped me patch them back together with more strips and another well taped bandage. Having large breasts kind of stinks in times like these, but round the clock sports bras will hopefully keep everything in place.

I hope all are doing well tonight

Strawberry8

So I had my post op with my BS today. Nothing else was found, which is a major relief. But more LCIS was found and since I am kind of young, he recommended I meet with an oncologist to discuss the condition further and explore the pros and cons of taking tamoxifen. I will see my BS again in 6 months for ultrasound, mammo in a year.

I am skeptical about taking tamoxifen but I will listen and see if the oncologist attempts to assess my risk. I will also ask about getting a second pathologist to look at my slides.

I had a hysterectomy about 6 months ago and am finally pain free after about a decade struggle. My surgeon found severe endometriosis during the hysterectomy and removed hopefully all of it along with an ovarian cyst and a bad looking appendix. I did keep my ovaries, so I worry that any endo left behind could flare up and cause pain but so far that hasn't been the case. The thought of taking another drug that might cause mood swings and hot flashes and other symptoms doesn't sound awesome to me right now. My current health goals are dropping some weight and getting fit again now that I don't have periods that last 20 days

Strawberry8

I just got home from the oncologist. I really didn't learn anything new about taking tamoxifen. I am leaning towards trying it and seeing if I suffer the side effects. My husband wants me to talk to my gyn/surgeon who did my hysterectomy and removed the motherload of endometriosis at the same time. Its good news that I do not have a uterus so no worries on increased risk of cancer down there, but if there is still some endo left behind how would it respond to tamoxifen?

I read last night that a gel tamoxifen was created to apply daily to the breasts but it is not yet available. It sounds interesting, little of the drug makes it to the bloodstream or other parts of the body, so milder side effects possibly?

So the oncologist gave me the prescription, he said there is no rush to start it but it is the recommended course of action. He asked that I come back in three months and sooner if ai have any issues or questions.

Anonymous

strawberry--so glad to hear no DCIS or invasive bc was found. I don't know about the history of endometriosis and taking tamox, it would defintiely be something to discuss with your doctor. there is no rush with LCIS, so you probably could take some time to see how your body reacts, now that the uterus is gone. Hopefully, your endometriosis days are over.

anne

Strawberry8

thanks for the reply, Anne. I spoke with my GYN/Surgeon and he compared my situation concerning risk of developing endometriosis symptoms now (with functioning ovaries and no tamoxifen) vs. me on tamoxifen as the difference between driving 55 mph and 56 mph.

He recommends I give Tamoxifen a solid trial because the benefits should greatly outweigh the risks in my case. He also mentioned that there is no data on Tamoxifen and endometriosis, I suspect because they concentrate on risks concerning endometrial or uterine cancer.

I plan to start my prescription this sunday after a fun weekend with my husband in NYC taking in a concert, some wine and a museum. Then its back to the grind, daily exercise and healthy eating.

What dose did you take? My oncologist prescribed me 20 mg TWICE a day...seems high

Anonymous

strawberry---as I recall, I only took it once a day (in the am)--20mg. I think 20 mg/day is the standard dose, (but i took it quite a while ago, things may have changed), you may want to double check with your oncologist and your pharmacist.

Anne

Strawberry8

I just heard back from my oncologist, it was a mistake. I will be taking 20mg once a day. I am thinking I will take it either with dinner or at night, I have never been good at consistently taking a pill in the morning.

Strawberry8

My first dose of tamoxifen just went down the hatch. Fingers crossed My body handles it well.

Strawberry8

Hello! I thought I would give an update. I have taken Tamoxifen for close to two months now. Aside from some mild hot flashes and night sweats and a little nausea in the hours after taking the pill, so far so good. I think! I do have a very very dull pain in my abdomen that comes and goes and could be ovulation related (had a hysterectomy so its hard tracking my cycles now).

I see the oncologist in July so I will discuss how I am feeling then and I assume I will be continuing the treatment.

As for how I am feeling after the lumpectomy, I am pretty well healed. I get some zinger type pain when I lift too much or when my underwire hits the incision. There is a bit of a dent which I am sure will fill in. Aside from the scar and the pill popping, I barely think about the LCIS stuff much. Which is a relief because I had a good amount of anxiety the past few months. I am sure when I get close to my next ultrasound date I will get nervous again.

Right now I am focused on working, gardening and my husband. He turns 40 soon and we have booked a vacation to the Keys for some much needed fun and relaxation, it doubles as the honeymoon we never had. I even booked us first class plane tickets! He works so hard and so many hours, we are both trying to focus on our health and exercise and finding ways to have fun and relax when there is time. All we have is our health and we are not kids anymore, time to take better care of what we've got!

Good luck to all, especially those just learning about LCIS. Hope all are well