New - and Newly diagnosed.

Not_Tuff_Enuff

Hello - brand new to forum. While I understand that this discussion should be in the high risk category (and please tell me if i should move it there), I had a surgical biopsy done on 8/4 and subsequently diagnosed with Lobular Carcinoma In-Situ. I have had a second opinion, and been to Dana Farber, which I was not pleased with. The orginal surgeon had given me three options. One, to do nothing (but screen), two proceed with Tomoxifin, and third, DM with reconsruction.

Dana Farber told me I was in the 30 percent range and would not operate, but could not tell me who long it would be until I was in the 50 percent range. Told me that it would metasisis when I'm fifty, but could not deny that it could in one to two years.  The thing is, why wait until it does and then have the surgery, chemo & radiation?  Why not be proative NOW?

Some background. I am 44. Single, recently laid off...have been married - divorced a couple of years ago, but have been a very independant woman my whole life. I lost my sister suddenly and unexpectly 15 months ago. She left a massive wake of destruction with her passing that we are still dealing with. Within 8 months, my 93 grandmother was diagnosed with advanced demtia and alzhelimers. I am the sole power of attorney as well as health care agent, as my father and aunt are comfortably living their crazy lives in Florida (I am in MA). I got laid off from my job (which at the time, I thought was a blesing), And lastly, my mother is leaving Maine, where she spends summers to take my step father home to Florida as he is dying of Cancer of the Asophogus (as well as multiple mylonma) this Friday.

I smoke, altough started taking Chantix this past Saturday, so they won't put me on tomoxifin anyway, not that i want it. I am quitting because of the ramifications that it will have to have the surgery, the recovery, and the reconstruction.

I have read a lot about this course of action being extreme, but over the past five years, i have gone thru so much stress, I don't think I could live my life on a six month basis, just waiting to hear that I need more surgrery or that it has metasisised

I am on all sorts of sleep meds, anxiety meds, etc. I took my sleep meds at 10:00 and it's now 11:40. No sleep for me tonight. With everything that's going on, this is all I can think about. In the past month, I can't eat, have no energy or motivation and at the oncologist appt. today, my blood pressure was low. I have turned to Grand Marnier to help me sleep, which I'm having a glass of now.

While I know this doesn''t have to happen right away, I feel like this would be the time, in between jobs to get it done and put this in my past. Stress has not been kind to me in five years and all my friends think I'm this strong, independant person that can be counted on. Now I feel like I have no one to count on myself. I know this is a pity-party post, but I'm in severe need to converse with others in this situation. I'm more afraid of the stress killing me than anything else.

ma111

Not-tuff-enough, don't put yourself down that much. You have had a lot of BS lately.

I can understand wanting to get the crap out now. I am in my 40's also and a single mom most of my life. I still smoke. Did stop for surgery when I was too sick from chemo to get up and go outside to smoke. My oldest just moved out this summer. It's not easy. If you want it removed, which I can understand the desire for that, then get it out. If breast cancer runs in your family get your BCRA gene testing done first. In between jobs is a good time. Do what would decrease your stress level!

leaf

This is a forum for people with LCIS. You're certainly welcome here, though of course you can post there too.  Several years ago, they created this LCIS forum, after many of us LCIS women asked the moderators.  I appreciated it because I think LCIS is unique.  Many other women post in the High risk forum.  They have everything from ALH or ADH to BRCA positive.  I know there are no hard and fast numbers, but **ROUGHLY**, population wise, ALH or ADH has a 15-25% lifetime risk of getting breast cancer, LCIS about a 30-40% lifetime risk of getting breast cancer, and BRCA women have something like a 60-90% lifetime chance of getting breast cancer.

The pool of women with LCIS is quite small, so we don't have good data on which LCIS women may be at higher risk of getting breast cancer.  Many speculate that women with PLCIS are at higher risk than classic LCIS women.

This is a lifetime chance of getting breast cancer, not the risk of dying of breast cancer.  Because LCIS women are followed more closely, the chance of a previously diagnosed woman with LCIS and nothing worse getting advanced breast cancer is less than that of the average woman.  Remember, even for the average woman, in the USA, about 65% of women who get breast cancer die of something ELSE.

I have classic LCIS, and have anxiety issues.  My breast surgeon refused to do any further surgery on me.  This was her first sentence to me, even before she knew about my weak family history (2 maternal aunts and 1 paternal grandmother.)  I was given a 30-40% lifetime chance of getting breast cancer.

I had 2 more breast biopsies 1 year after my LCIS diagnosis, and have had no other breast issues in the 5.5 years since I was diagnosed.  I chose tamoxifen, since I didn't like the watchful waiting option, and the PBM option was not open to me.  I developed other medical issues.  

I see a counselor for my anxiety and stress issues. I had a 2nd opinion at a major institution that I didn't like either. 

Everyone has different circumstances, and everyone has different feelings about prophylactic mastectomies.  Its important that other people give you the ROOM in order to make your own choice.  Its not their body, its your life and body.  I found it offensive to get advice about PBMs unless I specifically asked a person for it.  Its a very private choice.

I would just encourage you to examine all the pros and cons of each option before you decide.  This includes how you feel about each option.

When you are first diagnosed, you don't know how this diagnosis will change your life.  Will you be the worst case scenario?  The majority (probably over half) of LCIS (at least those without a deleterious BRCA mutation, or those without a significant family history) women NEVER go on to get breast cancer in their entire life.   (These numbers may not fit for PLCIS women, because that is such a new diagnosis.)

Welcome to our forum.  Its perfectly reasonable to be totally stressed and afraid.  Almost everything about LCIS is controversial - so that means there is no wrong answer as to treatment choice. 

Anonymous

tuff------you are certainly welcome here.  It is good to be able to talk with others with LCIS and to get support. I was diagnosed with LCIS 8 years ago and my risk is further elevated by my mom's history of bc (ILC). I do high risk surveillance of alternating mammos and MRIs every 6 months with breast exams on the opposite 6 months, took tamoxifen for 5 years, and now take evista for further prevention.

I think you may have misunderstood the term "metastisize". Breast cancer can only metastisize (spread to distant organs beyond the breast) if it is invasive bc. LCIS is non-invasive (it is contained within the lobules of the breast and has not broken thru into the surrounding breast tissue), therefore it can NOT spread.  The risk of developing invasive bc in the future with LCIS is somewhere in the range of 40 to 50% (lifetime). The LCIS itself doesn't usually become invasive (although it may in a very small number of cases (my bs quoted 5%) ; but it does put you at high risk and needs to be closely monitored. Tamoxifen does decrease the overall risk up to 45 to 50%---it's a very wise decision to quit smoking if you do end up taking tamox. Some opt for bilat masts--that is a very difficult and personal decision. There are pros and cons for both routes--BPMs and close monitoring/meds. The main thing is there is no rush with LCIS since it is non-invasive. Take your time to research, make decisions, or just let it all sink in.

Anne 

Not_Tuff_Enuff

Thanks all for your responses.  I feel like I'm in such a dark and lonley place.  With everything else that's going on, becoming deprssessed once I was dianosed, and then add on Chantix (which also has a side effect of depression) I'm just so overwhelmed.  Add to that - my boyfriend and I broke up a few weeks ago (who promised that he would see me thru this), and finding out my ex-husband remarried at the end of August, add feeling very alone and lonely to all of that.  

I can't count how many doctors I've seen over the past couple of weeks.  On Thursday, I have both a mammogram (on the breast they did the biopsy on) and right after an MRI.  Next Tuesday, back to the oncologist, then on Wednesday, back to the surgeon.

Is there anyone on here that has actually gone thru with the surgery and reconstruction that could give me an idea of how long this process takes (starting with surgery until healed enough to move on with your life, get back to work, etc)?

I am pretty resolved to have the surgery and reconstruction.  I just think that the stress of living with this will never leave me.  I am small breasted, so sexually they've never been a big deal to me.  I just want to fast forward to the end of this all.  It's all I think about, and I'm so exhausted all the time.  I just want to move on with my life!!!! 

leaf

I'm sure others will be along shortly to tell you about how long the process took for them.

I would encourage that before you embark on surgery, to either double check that your insurance will cover, or that you have the resources to cover.  Some breast surgeons may refuse to do surgery (as did mine), and some insurance may refuse to cover if you don't have a significant family history or other significant breast cancer risk.  

I totally support your choice; I just don't want you to have unexpected medical bills, especially if you're between jobs.

KellyMaryland

Dear Tuff,

So sorry you find yourself in this spot.  I had nipple and skin sparing bilateral mastecomy surgery in January.  That is my first recommendation, if you do decide to go the surgical route, is to inquire as to whether you are a candidate for this (there is an entire thread on this site regarding this type of surgery).  At the time of mastectomy surgery I had tissue expanders put in place and the expanders partially filled.  About 2 months later I had them the rest of the way filled, an office procedure that took just a few minutes.  In June I had exchange surgery, swapping the tissue expanders for silicone implants. 

I will tell you honestly that I have been surprised by two things:  1. I was surprised at how very hard it was for me in the first few months.  I had assumed that since I was youngish (42), fit, in good health, etc. that it would be easier than it was.  I did have pain in the first weeks and discomfort in the first few months.  Additionally, emotionally it was harder than I thought it would be- both at losing my original breasts and at adjusting to a new me.  2. I'm so surprised at how great I feel now, only three months from exchange surgery and only 8 months after mastectomy surgery.  The constant stress is gone and I have no pain at all and my only discomfort is during some exercise and I still cannot sleep comfortably on my stomach.  I think I look great too.

Others have had a longer process (more fills, complications, etc.) and still others have been candidates for a one-step surgical process.  There are still doctor appointments for me- still seeing the plastic surgeon every three months for now and the breast surgeon every year- but for me, it has been worth it.

Please feel free to ask me anything and best of luck to you.

Kelly 

Not_Tuff_Enuff

Thanks so much, Kelly.  Were you able to work in between all of these procedures?

I'm going to hunt down the thread on nipple and skin sparing...

And, although 8 months is still a long time, and I know everyone is different, but having the constant stress gone would be a dream come true.  

This is the first and only day that I do not have doctor appts., but here I am making calls to find support groups in my area, and on this site.  I can't stand having this and only this dominating my train of thought all day..... 

Not_Tuff_Enuff

Kelly - can you point me towards that thread?  There is so much on here, my head is spinning (even more)!!!!

iammommy

Hi tuff. I'm glad you found us. Of course you belong here. Please do not be so hard on yourself. You have been through so much lately. I have an anxiety problem and couldnt deal with the constant monitoring and worry so i had a pbmx. No reconstruction though. My only goal was to be as healthy as possible. Others will come along who have had reconstruction. I do have to say that sincey pbmx my anxiety about breast cancer has really lowered. Best of everything to you! Nan

KellyMaryland

Tuff, you'll find the Nipple Skin Sparing Mastectomy thread under the Surgery section.  I don't work but stay home with my kids who are now 8, 6, 4 and 2 so it's a pretty active lifestyle.  I had someone home with me for the first two weeks, mainly to watch the kids and take care of the household stuff.  By week three I was home alone with the kids but still didn't do things like lug laundry up the stairs and do the grocery shopping until about 5 weeks out.  After the exchange surgery my husband stayed home for 4 days and after that I was back to my regular duties.  Rest easy tonight!

Kelly

Not_Tuff_Enuff

Hello all - and thanks again for your responses.  Since I last posted, I had the MRI test where they run the dye (4 pokes to hit a vein), and this test was done immediately after (one hour) after having a mammogram.  Nothing showed up in the mammogram.  One hour later, I had the MRI, and a new tumor showed.  This sealed the deal with me, as I felt resolve having the surgery and putting this whole thing behind me.  The surgeon wanted me to have an ultrasound with core biopsy which was done today (so she could figure out if the lympnoids should be taken), and low and behold they find TWO tumors to biopsy.  Neither looked cancerous to the radiologist but, as I laid there calmly (because, with needles, I am comfortably numb now), having 6 snips, I just knew I could not go year after year dealing with this.  

The ultrasound woman (who I liked very much) played devil's advocate with me, which I allowed, but I still feel like I can not live my life like this.  I had so many mammograms (which is a joke, because nothing really shows up on these, until it's too late) scheduled, November, January, March, and then I know that other MRI's would be scheduled as well as ultrasounds.

After meeting with my plastic sugeon yesterday, he and my surgeon has scheduled the surgery for the 20th.  My mother is flying home from Florida to stay with me for a week, and then I'll manage on my own after that.  Plastics did tell me from start to finish it would take about a year for all to be complete, but that I would probably have the exchange about the end of the year.  

Scared to death, feel all alone, and feel really pissed off right now.  I finally broke down after a couple of months and shared with some of my "friends".  Who is supporting me right now???  The most unexpected people.  Not friends, not family (small family -- lost my sister about 16 months ago - and I'm really pissed at her right now for not being her when I need her most), but I have to accept that I am going to go thru this alone.  Hoping to start looking for work again after the holidays (and after the exchange).  The PS told me I had small areolas.  I was shocked.  Was always told by guys that quarter size was perfect.  Boy, I live in a small world, but I am a small A, so maybe mine (natural) are appropriate.

Quit smoking, as in NO BUTTS, this past Sunday.  Trying to have high hopes that I heal quickly and nicely.

The past two months, have shown me that I can not live life normally, hold a job, or even start a relationship having gone thru what I have.  Three tumors in two months?  One surgically removed and two biopsies done today?  MRI's, Ultrasounds, and Mammogram after Mammogram?

Who lives like this?

I'm so pissed, scared, alone but feel resolve knowing a year from now, this will be in my past.

ALL feedback welcome..... 

Not_Tuff_Enuff

Oh, and BTW, am really pissed because I feel like "Cancer Awareness = Cancer Bewareness".  Am so angry with these people who talk the talk, but don't walk the walk.  Where the EFF are the people I feel I need the most?  Has anyone else experienced this?  What is their problem?  They are the closest people to you until THEY are uncomfortable????  Ironically, it's Cancer Awareness Month.  I should have just kept my mouth shut.....

beacon800

wow you are handling a lot and I feel for you  and think you are doing a great job.  It sucks to go thru so many procedures, they are scary, they hurt, they are dark holes into dark fears.  But you are doing it, so that is great and you are doing a great job.

What were the new tumors that they found?  Invasive or more LCIS?  That makes a big difference on the next steps.  I had a bilateral Mx, no recon, it was easy, it did not hurt at all and I am totally, totally normal now.  recon is a longer road, but many do it and have awesome results.  Either way the peace of mind is wonderful, totally wonderful.

Not_Tuff_Enuff

Thanks, Beacon, but that's the problem...I DON'T feel like I'm doing a great job.  I feel out of control!  And I also feel like I'm experiencing a grieving process with all these emotions running thru me.  Right now, I'm mad as hell, and I just want to take back control over my life!!!!!

As far as the new tumors, I don't know.  I just had the tests done today, but it sounds like (if radiology knows what they are talking about), they will leave the lympnoids when they do the surgery.

When I'm done with all of this, I think I'm going to take a permanent leave of absence from the state I live in  (MA). and move to FL.  I just feel so abandoned right now, and hate the cold and knowing this winter will be the darkest, lonley, and agonizing winter, I'll be ready for a change of scenery and a new beginning...