how to decide what to do: experience/insights?

AlieSF

I’m in a difficult, decision-making place. I’ve met with my doctors (some of them multiple times) and done quite a bit of research but what I really need at this point is to hear the insights and experiences of people who have been where I am now, so I can incorporate this wisdom into my decision making process. Please, if you are able to answer my questions (at the bottom) I would be so thankful to hear what you have to say.

Here’s my info: Last July I went in for my first mammogram. A week or so later, I was called back because they were having difficulty reading the image. I assumed that meant it was poor image quality, but it was because my breasts are really “busy” meaning, lots of clutter and density. We got a better picture, and a few weeks after I was brought in for a sonogram guided biopsy. The biopsy turned up papilloma, and so in very early October I went in for an excision.  This first excision turned up not a papilloma, but dcis, with inadequate margins. In early December, I went in for my second excision; this second surgery turned up multi-focal dcis, also with inadequate margins.  In December, I met with all kinds of doctors and researched my options; I decided to get another excision/lumpectomy and to do a bilateral lift/reduction to give me some symmetry. I then planned to do radiation. Well, my third surgery went well and I am healing beautifully; unfortunately, my pathology now has come back as positive for invasive (Stage1) cancer.

To sum up: Six months. Three surgeries and a biopsy, and each time we find more than we expected. Disturbingly, the invasive cancer turned up on one of my margins that we thought was good enough—it was not on the side that was considered inadequate. 

Now, I have to decide how to proceed. Another lumpectomy followed by radiation? Mastectomy with a tram-flap reconstruction? Mastectomy with spacer for an implant? Mastectomy with a smaller sized implant, which may be a possibility? Should I go ahead and get a bi-lateral mastectomy with spacers for implants, for maximum peace of mind? 

My questions, for anyone who has made this kind of choice (lumpectomy/radiation v. mastectomy w/ reconstruction v. what kind of reconstruction):

1.     What did you choose, and are you satisfied with the results?

2.     How did you make your decision?

3.     Is there anything you know now that you wish you’d known then; anything you’d do differently?

AlieSF

Okay, apologies. It was my first time posting and something crazy happened with the coding. I am going to type this in manually (instead of cut/paste).

I'm in a difficult, decision making place. I've met with my doctors (some of them multiple times) and done quite a bit of research but what I really need at this point is to hear the insights and experiences of people who have been where I am now, so I can incorporate this wisdom into my decision making process Please, if you are able to answer my questions (at the bottom) I would be so thankful to hear what you have to say.

 Here's my info: Last July I went in for my first mammogram. A week or two later, I was called back b/c they were having difficulty reading th eimage. I assumed that meant it was poor image quality, but it was b/c my breasts are really "busy" meanig, lots of clutter and density. We got a better picture, and a few weeks after I was brought in for a sonogram guided biopsy. The biopsy turned up papilloma, and so in very early October I went in for an excision. This first excision turned up not a papilloma, but dcis, with inadequate margins. In early December, I went in for my second excision; this second surgery turned up multi-focal dcis, also with inadequate margins.Follwoing that second surgery, I met with all kinds of doctors to discuss my options and I decided to get another lumpectomy and to do a bilateral lift/reduction to give me some symmetry. I then planned to do radiation. Well, my third surgery went well and I am healing beautifully. Unfortunately, my pathology has now come back as positive for invasive (Stage1) cancer.

To sum up: Six months. Three surgeries and a biopsy and each time we find more than we expected. Disturbingly, the invasive cancer turned up on one of my margins that we'd thought was good enough- it was not on the side that was considred inadequate.

I need to decide now to proceed. Another lumpectomy with radiation? Mastectomy with reconstruction, either spacer for future implant, possibly a smaller implant, or a tram flap? Do I go for maximum peace of mind and get a bi-lateral mastectomy with spacers or smaller implants? I have a good list of pros/cons/considerations for each, but if you have made this kind of choice, I would really love to know and would appreaciate you sharing your thoughts/insights, re:

1. What did you choose, and why? Are you happy with the results?

2. Is there anything you know now that you wish you'd known then; is there anything you'd do differently?

Thank you, in advance, for any help you can offer.

Cheers,

Alie 

coraleliz

It sounds like mamograms aren't reliable for you(for me either). That's why i went the BMX route. I had IDC in both breasts. I didn't have reconstruction. I happy with my decison. It was my best option.

Scuba_duchess

Alie, it's a tough call. A couple of questions. Have you had genetic testing (BRCA1 / 2) and have you gotten your Oncotype DX score. The oncologist ordered that one. The onco score helps look at likelihood of recurrence.... These are both good data points for working through this.



I got diagnosed in May, lumpectomy July but 4 of 6 margins were not clean. They took a decent chunk out. I struggled with the decision, but given my family history with BC, my sister was also diagnosed in her mid-forties, I opted for bilateral mastectomy with Latisssimus Dorsi recon. In my case it was the right call as when the biopsyed the good breast, they found DCIS. Either way, whatever call you make is the right one. Here are some thoughts, feel free to PM me if you want any insights, happy to share...



1. I lost ALL feeling when I had the BMx, it's been 7 months, doubt it's coming back. I miss that terribly, it's been a major adjustment for me and DH.

2. The TE's sucked, but they served their purpose.

3. Ask to see pictures from PS so you have reasonable expectations of what you would look like with each surgical option.

4. Make the decision for the long term, not just about the right now. No matter what path you go down, you will get through it!



Try and remember to breath. I wish you well.



Cheers, Lisa

AlieSF

Thank you, Coraleliz and Lisa.

My BRCA (I am adopted w/ no med history) was negative; my doctor said that the oncotype is to determine whether chemo is advised; since it isn't, it looks like they aren't going to order it. Now, I'm thinking I'll nudge my oncologist, and maybe push for it. Because I don't have a family history, I am inclined to be more aggressive.

Thank you, Lisa, for "whatever call you make is the right one" That is now my mantra of the week.

teddybear71

For me the decison to have BMX with DIEP reconstruction was an easy decision. I am only 40 years old and I have 2 kids at home who still need me for years to come. I decided to do the BMX due to family history of BC. My mom is a BC surviovor, my Grandmother died of BC and my Great Aunt also had BC. I did not want to keep worrying that it would come back on the right side which so far was cancer free. I am still new to all of this too. I just had my BMX with DIEP on 2/17 and am currently at home recovering. I am also waiting on my ONCO DX to determine if Chemo will be needed for me. My head still feels like it is spinning but this web site has been a godsend and is full of such amazing women and information.

DocBabs

My personal preference in your situation would be bilateral mastectomy.You obviously have some pretty active breasts and that's in one so why would you not think that it would happen in the other at some point.I was followed for about 3 years with LCIS and statistically I was told that it should not advance any further.Well, 3and6 months after negative MRI and mammo I end up with IDC.When they did the BMX they also found DCIS in the same breast and LCIS in the other. Due to my low onco score I too did not require chemo .I think having a BMX was being aggressive enough.As far as reconstruction, I knew that I didn't want to have to deal with the very long amount of time needed under anesthesia and in recovery ,for DIEP ,so that left me with implants and I was ok with that.My PS and BS both offered me a nipple sparing mastectomy. What they failed to tell me was that could not control where my nipples would end up and in my case they are way off center.Given that knowledge I would have had them remove the nipples and then later decide if I want them tattooed or not.Mastectomy is a big surgery but surprisingly not all that painful or difficult to recover from and I personally did not find the tissue expanders all that uncomfortable. Maybe not that attractive but doable in clothes.I think the key is to go slowly with the fills.I ended up with 320 cc's after surgery and then 2 fills of 60 cc's each time for a total of 420cc's, not all that big.My exchange to permanent implants was 3 months after BMX and that recovery was about 2-3 weeks.

So, that's my thoughts, get rid of all possible trouble making tissues, silicone implants and get back to my normal life.Good luck to you as you start this journey.

Maya847

Alie I would definitely request the oncodx test.  I originally had a lumpectomy.  Stage 1 but grade 3.  Chemo was rec due to the high grade.  Originally the course of chemo I was going to get was not as aggressive as what we ended up using, once my onco  score was received.  (I was 45).  I started my chemo with the plan to follow with radiation as I was not having the mastectomy.   I have no sisters and my mom passed away at a young age, but not from cancer.  I pushed for the BRCA test and learned I was BRCA2 +.  This then changed the treatment plan again.  Radiation was cancelled and this past March I had a double mastectomy with reconstruction.  I was suppose to have the diep flap, however ended up with the TRAM.  I am 8 weeks post op today.  I remember being asked by one of the doctors at Mayo if they prepared me well for what to expect as far as pain.  They did.  What I think they failed to prepare me for were all the possible complications.  I know they skimmed over things and perhaps I did not ask enough questions when it came to this.  I ended up having almost every possible complication there was.  Pneumonia with partially collapsed lung, infection in both breasts and at abdomenal incision, DVT right leg and pulmonary emboli and my right vein graft from my abdomen did not take, so they did a vein graft from my arm.  Although I have some nasty scars on my arm, their expertise saved the flap from dying.  I was in the hospital for 12 days and sent home with IV antibiotics and anticoagulation therapy.  With that all being said, would I do it again?  Yes.  I do not believe it is typical to have all of these complications.  What ever you decide to do, make sure you ask questions and what if's...if you decide on reconstruction ask your surgeon how many of these surgeries they have done and what their success rates are or what percentage of flap necrosis they have.  Good luck to you!

dlb823

Alie, you mentioned meeting with all kinds of doctors.  Did you ever have an MRI during the dx process?  If not, this might have been an important step that was missed, in which case I would suggest maybe getting an opinion from a breast surgeon @ an NCI-designated facility -- in case anything else has been missed that might factor into your decisions.  

Here's a list of those facilities.  http://cancercenters.cancer.gov/cancer_centers/map-cancer-centers2.html   With such a complex hx (3 surgeries, each revealing additional involvement), I would want input from a medical team at one of these -- probably UCSF or Stanford in Northern California -- and they will also have the most advanced recon options, should you decide to go that route.  

I also had a lumpectomy that didn't get everything and eventually, with the gentle urging of my BS, decided on an mx, which was very difficult to come to terms with for me.  What helped me the most was seeing photos of DIEP reconstruction, which is what my 2nd opinion team @ UCLA recommended for me, and which I'm very happy with now.  But it took me several weeks of indecision and writing pros & cons lists to come to terms with that being the best choice for future peace of mind.  But I well remember how surreal that time was, and I'm so sorry you're going through it too.     (((Hugs)))   Deanna

NatsFan

Agree with dlb 100% about getting to an NCI Cancer Center with a Breast Center.  You've had so many tests, surgeries, biopsies, etc.  and each time you go through a procedure there seems to be another "surprise" result that the medical team didn't seem to expect.  Get a consult from the top people at an NCI Center.  They'll go over your case with a fine tooth comb from beginning to end.  They can also tell you all your recon options.  Even if you don't end up being treated at the center, you'll have the assurance of having your case reviewed by a medical team that does breast cancer all day every day. 

As for me, I went the route of staged skin-sparing BMX with tissue expander placement that took me through active treatment.  Once active treatment was over, I had a DIEP flap recon.  I'm thrilled with the results.  It's been almost 4 years since my DIEP surgery, and I honestly forget most of the time that they are not the original "girls".  

Good luck with your decision!

Do your research, make your decision, and then don't look back.  

marilyn113

My situation is very similar to yours.  I was persuaded to do lumpectomy and radiation.  A couple of months after I finished radiation, I had a lump under the SNB scar that freaked me out.  I had a core needle biopsy and it was benign, thankfully.  But it made me realize I was in for many years of that worry.  (I'm 53.)  Since I have very dense breasts, I just don't trust any of the screening methods to find a recurrence early enough.  Breast density also increases the risk of recurrence.  (Check out www.areyoudense.org.)  Add in the risk from LCIS and it's too much for me to cope with.  I will be having BMX on 8/1.

I am not having reconstruction.  I have fibromyalgia so I don't want to stress my body with more surgery than necessary.  I'm tired of the underwire bras and the sweat that collects under them.  I've never had much nipple sensitivity, so losing that is not an issue.  After years of lumpy painful breasts, having a numb chest will be a relief.

Here's studies I've gathered regarding dense breasts:"Breast density is one of the strongest predictors of the failure of mammography screening to detect cancer." www.areyoudense.org

"Up to half of breast cancers cannot be seen on the mammogram in women with dense breasts." www.impowerage.com

"Ipsilateral breast tumor recurrence (IBTR) occurred in 57 of 1209 patients (5%) without LCIS compared with 10 of 65 patients (15%) with LCIS (P = 0.001). The 10-year cumulative incidence rate of IBTR was 6% in women without LCIS compared with 29% in women with LCIS...Subsets of patients in which the presence of LCIS was associated with an increased risk of breast recurrence included tumor size < 2 cm (T1), age < 50 years, invasive ductal carcinoma, negative lymph node status, and the absence of any adjuvant systemic treatment (chemotherapy or hormonal therapy)" www.ncbi.nlm.nih.gov/pubmed/11346867
"Over ten years, women in the highest breast density category had a 21 percent chance of cancer recurrence, compared with a 5 percent chance among women in the lowest category." http://www.sciencedaily.com/releases/2009/11/091109090427.htm#.T44Lc9ROiNA.email

"Kaiser Permanente have found that patients with a very early form of breast cancer (ductal carcinoma in situ or DCIS) who have higher mammographic density may be at increased risk for subsequent breast cancer, especially in the breast opposite to the one with the initial cancer... While risk was elevated for both breasts, the increase was greatest and most consistent for the breast opposite to the one with the initial cancer," http://www.sciencedaily.com/releases/2010/10/101007092701.htm#.T44L-BWleL8.email

"Women with ductal carcinoma in situ -- DCIS -- who later develop invasive breast cancer in the same breast are at higher risk of dying from breast cancer than those who do not develop invasive disease." http://www.sciencedaily.com/releases/2011/03/110311165221.htm