Questions

goldie63 · December 2016

I'm feeling sad, and emotionally exhausted. Since my Aug 24th mammogram and various additional tests etc it's been communicated to me first that I had bc again, 2nd that I didn't it was benign, 3rd that oops we don't actually know let's do one more thing, and now 4th that yes I do have bc again Dcis. I won't be able to talk to my surgeon's office until the week of Jan 9th because they're closed until then, and I sure hope I can see him soon after that because he's then going away for a couple weeks. I also have some questions which I hope some of you can help me with so I'm going to post them. I decided to put them all in one post. I appreciate any input.

1. Bilateral Mastectomy without (immediate) reconstruction - any thoughts on recovery time? I have a desk job but it's high stress and i work lots of hours. I have to talk to my surgeon obviously but I don't want to go back to work until I feel up to it, physically and emotionally. I'm pretty sure he will support whatever I want, because for excisional biopsy a couple weeks ago, on a Friday, he said some women would go back to work on the Monday and some would take 2 weeks off because there's an emotional recovery too. I went back on the Tuesday. I could work fine, but I thought I was getting an infection by the end of the day Wed. I think my bra was too tight. The incision area was very red, with noticeable heat. It mostly resolved itself by the morning, and wasn't quite as bad again by the end of the day Thursday. Everything I read seems to be about recovery time with immediate reconstruction though. I think right now I won't do reconstruction at all, so it definitely won't be immediate. My partner says she doesn't think recovery would be much less time anyway. I'm guessing 6-8 weeks off work? Is that ridiculously high? (Or low?)

2. Lymphedema - I had axillary lymph Node dissection with 1 of 13 involved in '97 (in the days before Sentinel node biopsy). I got an infection in 2003 and that somehow became lymphedema with recurring cellulitis. With a mastectomy but no lymph node surgery is there a risk of lymphedema? The 1 arm getting worse, or the other one starting? Or since there's no axilla surgery is that 1 thing I don't have to worry about?

3. Future checks for bc - obviously no more mammograms (without reconstruction anyway) (a tiny silver lining??), but what about MRIs? I've been in the high risk bc screening group for a couple years since my sister was diagnosed and we were both found to have a bc gene, and in Ontario that means annual MRIs along with mammograms. Do they still do breast MRIs for bc screening if you've got no breasts? Chest wall maybe?

4. Mets - I know dcis is stage 0 cancer, and it's confined to the cell so can't metastasize. I also know dcis can evolve to become invasive cancer. I had IDC 20 years ago when I was 33, i have a BRCA 2 gene, have something else in my other breast they're monitoring ... And I had a cousin with Dcis mid 50s who died at 59 of liver mets. 3 of 6 sisters in that family have bc, and my sister and I both as well. 2 great aunts in the BRCA 2 side of the family had bc, 1 died in her 40's. I know my sister and I both have the same BRCA 2 gene. I don't know about the great aunts or the cousin who died, just that they're on the same side of the family. My sister was diagnosed with bilateral bc at age 48 - she opted for bilateral mastectomy after gene testing and everyone was shocked when a different cancer (IDC) was in her other breast (ilc in the one that was known). Anyway a bunch of rambling over I hope stupid fears, but the something else in my other breast, and my cousin with dcis and then getting liver mets, I'm thinking of that. Is there some info on BCO other than the "30% develop metastatic cancer?" stream? I know stats have to be considered carefully - "There's lies, damned lies, and statistics." - but as an accountant I'm a numbers gal and the more legitimate info I have the better.

I am having a lot of worries I guess, and very little of it relates to actually losing my breasts. Lots has changed in 20 years. I've had a few little 'scares' over those 20 years but ever since my sister was diagnosed I've had one thing or anotherbeing followed up on and now here I am again. Sorry for the long post I'm trying to figure it all out. Thanks.

Binney4 · December 2016

Goldie, I'm so sorry for the struggles you've had to go through! I'm hoping this time around will be smooth sailing, and no more "surprises"!

I can only address Question 2. Unfortunately, lymphedema is a possibility with any breast/chest surgery or trauma (did you know it can even be a problem for football players because of the repeated trauma to their chests?!) Good idea to see a well-trained lymphedema therapist BEFORE your surgery, for baseline arm measurements for future reference, some risk reduction tips, and maybe even a compression sleeve and glove or gauntlet to wear post-surgery on that arm. The good news is that since you're aware of the possibility you can jump on it fast if it should happen, and a quick diagnosis and treatment means it's much easier to handle on-going.

The repeat cellulitis is an issue your surgeon definitely needs to be aware of. Maybe even involve an infectious disease doctor to advise you before surgery, if you can find one who is familiar with lymphedema-related cellulitis. And again, that visit with a qualified lymphedema therapist before surgery should include getting your other arm (the one with lymphedema already) into excellent control as a way of assuring the infection has no chance of re-starting.

Looking forward with you to NO complications, a quick recovery, and great good health going forward.

Gentle hugs,
Binney

KBeee · December 2016

Goldie, So sorry you are facing this again; you are wise to ask questions here and work through options do you can have s good list of items to discuss at your appointments.

Here are my thoughts:

1. I had BMX with immediate reconstruction. I worked a few hours per day at a desk a week later, and returned to work as a firefighter 6 weeks later after surgery. I tend to rebound quickly from surgery.

2. With no nodes taken, the result is not zero, but it is much less than when nodes are taken. Ask if they plan to do a sentinel node biopsy.

3. They usually do not routinely to ultrasounds or MRIs, but having had BC twice and having BRCA gene, you can definitely make a case for it. Advocate for yourself.

4. The chance of mets is very low, but it is not zero, so just be on top of any symptoms.

Recurrence seems to strip you of your control even more than initial diagnosis. Control what you can.... Do things that make you happy, exercise (even just a walk), tidy things up around the house, make and freeze some meals, and pamper yourself.

You can do this

goldie63 · December 2016

Binney, thank you for your suggestions. I will give my physio a call next week and see her to go over everything. She is our local lymphedema specialist; I was one of her first patients (clients?) when the local cancer clinic started a pilot project shortly after my lymphedema started. I had no idea football players would get lymphedema - never played football though! I did mention recurring cellulitis to my surgeon and now I will again. Thank you

goldie63 · December 2016

Karen, thank you for your input and comments as well. You have been helpful several times already, and I really appreciate it. I feel like I should know what's going on but 20 years later there's sure a lot I don't know anymore. And, I do like to be in control! I find it much harder to be assertive re my health then for say work, but I'm doing it anyway. Thank you for your words of encouragement

MinusTwo · December 2016

Goldie - #3 - testing: Since I also has a recurrence, my original MO who retired order MRI's or CTs every 6 months in addition to a full blood panel, with a PET/CT substituted at least once a year. He planned to do that for 5 years & told me to push for that. My new MO has been doing a CT with & w/o contract every 6 months along with the blood work. I had to really push to get a PET/CT 2 years down the road, but I wanted one to show 'hot spots' for my own peace of mind.

goldie63 · December 2016

Thank you MinusTwo. I'm going in the opposite direction of you, from IDC to dcis, but I want to at least talk about additional tests anyway given my cousins history (dcis to mets), and definitely until final surgery results and checking what's in my other breast (hopefully nothing). I asked my GP for a referral to the Cancer Clinic when I saw her and she was surprised and said my surgeon could refer me but probably I wouldn't need anything further if I had a mastectomy since it was dcis. Then she did add that she could refer me. I am definitely getting myself referred there! I think it might be better to have any additional results from bmx for there so I will wait to see surgeon. I should note though that my gp is great. She very obviously came in on a day she wasn't working to see me and one other patient so I can't fault anything she does

PoppyJQ · January 2017

HI Goldie, I also have an IDC diagnosis then years later DCIS.

#1 - BMX with no recon was my recent decision also and it went really well. Recovered great except fluid needing to be drained a few times. As far as return to work I didnt rush it and didnt have to so I took 8 weeks due to the seromas and range of motion. If I had needed to get back I could have returned to a desk job in half that time. Your doc mentioned emotional recovery for time off after LX, after the MX its good have that option if you need more time. As far as the physical part, if range of motion is not a concern in your job (it was in mine) the recovery can be pretty smooth, the whole thing was more uncomfortable than painful. Barring complications of course but the no recon choice was great as I wanted as simple a recovery as possible, life is calling no time for more doctors than necessary for me! Two year old grandbaby was just here for the holidays and I was able to pick him up and carry him around with (almost) no problem so I'm ready to get back to living life.

Maybe its just a difference between where we live but I was already being seen/monitered by a MO every 6 mos since my 2012 diagnosis. Can you check to see what insurance covers and request/demand to have an MO regardless? Mine is helpful about latest developments, what to look for in staying cancer free, etc. as well as encouragement this time with my worry about the future.

Here is how we are looking at my situation. The DCIS diagnosis was considered a new cancer. We did surgery to get rid of this one just like the last. Now we move back to monitoring for mets from the 2012 IDC. Not that it couldnt happen from the DCIS, well some say it cant but Ive certainly seen it on BCO members stats. The risk of mets from the IDC was always there and now we get back to business staying healthy. MO saw me 2 mos after BMX, examined my new chest, we will keep looking physically there but not with scans as I understand it. No mamo but didnt think to ask about MRI. My MO doesnt do PET scans unless there is suspicion but I see many on here getting them without advanced cancers so I dont know how that is determined...should I ask?

Genetics - I am PALB 2 positive, still learning not a lot of available info. I tested negative for BRCA1&2 with my first cancer. DCIS diagnosis prompted me to be retested for all the new things available and I did have the positive result.

Going from DCIS to mets - scary however does it matter to gals like us? We had IDC before and so the mets are a possiblity for us regardless, thats a fact whether we have this DCIS diagnosis or not. DCIS is telling us to get vigilent. Thats is how I looked at it. Getting cancer again in the form of DCIS was probably the best thing that could have happened to me personally. I am much more serious about it this go around and took risk reducing steps that I would not have since honestly I thought (hoped) that I would never have a reccurence. Dont many of us think that? I threw the book at it the first time and thought that was enough. Then I was screened every 6 mos - which eventually led to call backs, second looks, biopsies, MRIs you name it. And ultimately the DCIS. But now I'm in reality, it could come back and I'm working on prevention and educating myself instead of just thinking it was a one time thing. Not freaked out but living life a little more deliberately. Hugs to you and message me anytime.

goldie63 · January 2017

Hi Poppy, thanks for the response. It's nice to talk to someone with a similar diagnosis. I did see my MO for 12 years after diagnosis. The standard here is 10 years, but I was having some issues with lymphedema and recurring infections so they kept on With f/u for an extra couple years. The last 8 years I've been followed up just by my GP, and then for the last 2 of those I've also been in what they call the high risk breast screening program. I've never had a pet scan, or a whole body MRI, just breast MRIs. If pet scans were standard 20 years ago well they didn't have them here. I like what you say about dcis not really mattering in terms of mets because I still already had IDC. I need to check the standard of care in Canada, specifically northern Ontario where I am, and then follow up on being followed up! I never expected to be back here after this many years, after awhile except for annual tests most of the time I didn't even think about it. Until my sister had bc 2 years ago anyway. The 2 biggest things on my mind right now are when will surgery be, and there better not be anything in the whatever they're watching in my other breast! And I am definitely going to get a referral to see an MO. Thanks again , talk to you later

Emily2008 · January 2017

Goldie, just stopping in here to say hello, from a fellow BRCA 2 gal.

I was dxed at first in 2008, had lumpectomy, found bad margins, ended up with a double mastectomy and recon (done at different times because I didn't know I was BRCA pos until after the first mast.) For what it's worth, I knew that if I was BRCA positive I would have prophylactic mast and a total hys/ooph, which I did in 2010. I had 4 rounds of AC chemo in 2008, followed by 6.5 years on Tamoxifen.

On Oct. 31 of this year I was diagnosed with a new breast cancer. I wasn't expecting that especially considering all I had done to make sure it wouldn't happen again! I can blame BRCA for it. With the vast majority of breast tissue removed with a mast (95-97% is the statistic I've read), the chance of a recurrence is slim, but I believe my BRCA status put me over the edge.

So, while I can't answer all your questions, I wanted you to know that a fellow BRCA mutant says hello and sends hugs!

goldie63 · January 2017

Hello back to you, Emily. Bc sucks, and BRCA 2 especially sucks! My biggest worry right now is that the whatever they're following in my other breast will be cancer, and invasive cancer, and they'd recommend chemo again. I'm hoping right side mastectomy stays prophylactic. I had a tough time on chemo in 97, they just had some new anti nausea drugs but they didn't work that well for me. My sister said she was nauseous on chemo but didn't throw up at all. I'd rather just leave it at dcis and not have to find out anything about chemo this time. Anyway 1 step at a time, hard some days not to get ahead of myself though. It's nice to meet you but really i'drather meet all of you somewhere else!

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