December 2011 Surgeries - want to wait together?

I asked my MO why I hadn't been referred for BRCA testing, so she referred me on Monday.

On Tuesday, the Geneticist called, and did a phone interview.

It was obvious within a few minutes that my risk was low, but we talked for an hour anyway (interesting woman!!!) and she ran more numbers, and asked me to call her back if I found any more evidence of any kind of cancer in the family.

She said that right now my risk of carrying the gene is around 1%. So no testing for me!

Good morning Dec. sisters I'm just catching my breath in a long series of bad luck from TE replacements with capsular contracture and lymphadema with CC starting again. If my body rejects the TE this time I'm done. I will take them out and not have reconstruction.



The good news after not being able to tolerate Arimidex side effects, Aromasin seems to be agreeing with me or is tolerable so far and I'm so glad I didn't give up on trying something new. Also added Zoloft for anxiety a very low dose and this has also done the trick.



Cookie I just wrote down your allergy alternative tips to surgery without the adhesives. It happened 3 times too many and I don't want to go through that again in my upcoming surgeries.



Ginger, I'm also going Friday for a sleep study. I am so sick of medical things and am looking forward to getting a life back hopefully soon with foobs or not I don't care anymore. Thinking I need a vacation next year!!

Ginger - and anyone else that did a preventative MX. I am not planning to have a SNB on my right side. I have such LE risk from the left I'd like to have a good arm left. But I know if they find anything in the right breast they will no longer be able to identify the sentinel node. I had an MRI in Dec, a PET in feb and will have another PET before surgery. Not to mention chemo. I am hoping the right will test clean, but still am concerned I'm going to regret the decision. Did anyone have to go back for the node dissection?



Bogie - I'm so sorry you are having so many issues. All of this is hard enough the first time. Hugs to you

Faith - interesting question I'd never thought of before, nor asked about.  I hope someone can answer.

 I did have a Petscan before my BMX (right side prophylactic) and nothing showed up (eventual path was clean), but I also know a Petscan (maybe that was the CT, not sure) won't catch something below 5mm. What if after the pathology on the "clean breast" cancer showed up? I know the cancerous nodes "feel different," but likely one would have more nodes removed than with SNB in any followup.  Have they done a US of your right axillary area?  I understand an US comes up with 20% false negatives, but it catches cancer in the nodes (not micromets) 80% of the time.  Did a mammo not detect your first cancer?  Mine lit up on a mammo, so I felt pretty confident that my right breast was clean, as it was.

Ginger/Bogie - I have been treated for sleep apnea.  The diff between using the cpap machine and not is really incredible.  Headaches, constant tiredness, not being able to exercise at full bore,  memory issues to feeling refreshed...and that was only 12 events an hour (they said I was borderline apneic (sp?) and that shocked me considering how bad I felt).  Initially the mask is difficult to get use to (especially when it is warm), but now I associate good feelings with wearing it.

Faith-  adding to what Bogie said, I had a SNB 0/1 and did experience cording. My BS said my risk of LE was like 1% (I've seen differeing opinions) and cording had no connection to LE (I've seen differing opinons on that). I am fine now....a PT got rid of the cording.  My BS even released me for BP and blood draws on my cancer side after SNB (guess what..differing opinions on that too).

Be patient with the mask. You will eventually get use to it. I prefer the mask, btw, to the nares.

Solar eclipse just went over my town...we're almost dead center. I thought with 97% of the sun covered it would get much darker than it did.  Right during the annular phase, a misty cloud covered the sun..presumably making it even darker.  I did have turn to the lights on in my house, where I noticed it the eclipse the most. 

Hope all are doing well!  This weekend I had a first.  After the UMX and reconstruction on December 1, I had not been comfortable enough to show my husband the post-surgery site. I have no nipple or aerola. I know it was all in MY head, thought I looked strange.  After months of inner pep-talks I finally  stopped covering up, stopped turning when I took off my shirt,  and went to bed just wearing a flimsy top.  Thing is - he wasn't bothered at all.  Sure you look a little different, he said, but you are still lovely.  Amazing how much pressure I had put on myself about this.

Yay, fitzdc! Amazing, the places our minds will take us....

I find that I am WAY more open about letting DH see me topless after my BMX. The original girls were 38DDD, huge and droopy. I was always embarassed about them. Now - even with just MX scars (may get 3D nipple tatts down the line) - I feel much freer with my TEs in, and am able to walk around without covering up like I did pre-surgery. DH is fine with it.

body image and the mind --- I had thought I would be okay and this (besides the drains for 7 weeks) was the most difficult for me.  Realized I had more tied up in the whole breast/sex thing than he did.

Hope everyone is doing well and enjoying the Memorial Day weekend.

Kam, Spunky, hello to you too. Still going through tx, only one big tx left. So many threads to keep up on, sometimes this one is hard to get to. LOL . Lovely day here in Wisconsin. Remembering all those who gave their best, Happy Memorial Day.

Hey, spunkyboobster - thanks for checking in!

Kam170 - BOOOOO for the back pain and car problems. Hope you find relief from your pain soon, and the car problems are easily fixed. Enjoy your day off!

Moonflwr912 - glad to hear you only have one tx left.....sending you good wishes.

fitzdc - I just read about Rolling Thunder in this morning's paper! Awesome!

CookieMonster - Ahhh...the end of the school year. DH was a teacher for 33 years. I sure didn't envy his job - he taught in a continuation high school, but I sure was envious of having the summer off. My job at the university was year-round. Hope you find good things to do, and forget about Dr.'s appointments as much as you can. Wishing you the best on that first mammo.

Ginger48 - The Color Me Rad 5K sounds fun! It's great to be able to do normal things. There are lots of Memorial Day activities taking place all over town, but we just stayed home.

~~~~

When you're retired, the three-day holidays lose their attraction. Everyone on our block who had RVs were out loading them earlier in the week. Then they took off to join the thousands of others who were heading up to the lakes and streams and mountains and beaches to camp for the long weekend. We were glad to wave them off and wish them a good time!

We did have some company on Friday - two of DH's former mentor teachers who were like brothers to him when he first started out. They've been close for nearly 40 years. It was a good visit for all of them.

The weekend was quiet, we worked in the yard, then on Sunday went to church and the nursing home where my MIL is. My FIL spends all day Sundays with her. They are both 90, and Dad still plays in the local Military Band. In fact, he had a gig today at a local cemetery where they have a huge Veterans' memorial celebration.

We're just spending today quietly reflecting on all those who bravely gave their lives for our freedom.....and we thank all military personnel for their service to our country.

What is Rolling Thunder?

I hope this group stays together for the long haul.  I know, personally, I have a lot of bottled up feelings and emotions about this BC thing and I'm going to need you guys.  We have a nice mixture of Grade 1,2,3 ers, implants, DIEPs, BRCA positives and negatives.  We are very diverse, yet we share this space in time that brought us together.

One feeling that I don't mention, or barely have mentioned, that creeps into my psyche is recurrence.  I am Stage IA, but I have a very aggressive tumor.  No matter what I read, I always get the "but if you have a high oncotype score, grade 3, high mitotic rate, blah blah" and it just puts me in the little less than best category for my stage.  Today I read that the deeper the tumor, the higher the recurrence.  That was the first time I read that one!!  These issues just crop up now and again and I bottle it up and wonder how others are dealing with this aspect of BC?  So if the survival rate in 10 years for Stage 1 is 90%, does that mean I'm one of the 10%??  I'm not going to lie, I'm scared and as I end chemo, I know there is this phase where we are actually jumping off the cliff, away from our caregivers who seem to be nurturing us along.  Just my 2 cents for this thread. 

Kam, I think we are all going through the same thoughts. We don't want recurences, but those things are always in the background. Realism, or pessimism? I will do the best I can, come what may, and not be obsessed with the thought of recurruncy. At least that's the plan, ask me tomorrow, I may be obsessing then. ! LOL. All I can do is day by day. Much love.