What to do, what to do.....

TheLadyGrey · October 2011

Thank you all. I am now resigned to taking this seriously. I will actually be surprised if there isn't an invasive component as my surgeon's choice of words and body language at our meeting Wednesday were not comforting.

Nothing to be done about that.

Here is the crisis de jour: I woke up yesterday morning with an acutely sore throat and fever. I had an early flight and have been out of town since. Sore throat is worse than it was (wouldn't have thought that possible) and fever ranges between 100 and 101.

I NEVER get sick, EVER. I think that's why it took me so long to recognize it. That fatigue earlier in the week wasn't about the stress of the upcoming surgery - it was my body fighting, and losing, to whatever this is - likely strep as I have NO other symptoms.

I've been taking codeine to deal with the throat and fever related back pain - have an appointment with my internist Monday. I'm going to have to bite the American Airlines How Can We Screw You Next bullet and go home tomorrow as I am beyond miserable.

I'm mentally assuming my Thursday surgery will be postponed (insert primal scream). Has anyone gotten sick right before surgery like this? How long do you have to be well?

They let you send kids back to school after 24 hours of no fever - I sure hope that is the standard.

I'm very very sick, very very far away from home and very very weepy.

Deirdre1 · October 2011

Take a larger than usual dose of the "cough medicine" and hopefully you'll get a good night sleep! This is difficult and frankly the stress is enourmous - but most of us get through it!! I actually lost hair and my hair due to the stress and it had been my 'crown & glory" for my entire life... This stress stuff isn't for sissys!! HAve a good cry and go to sleep that's how I'd do it - don't worry about this again 'til tomorrow!!! Be well!!!

CoolBreeze · October 2011

I just went through that! Yes, I was sick right before surgery. I was scheduled for a liver resection on October 3rd (I have mets to my liver but nowhere else - I am fortunate enough to have a very forward thinking oncologist who referred me to a Super Surgeon in SF who agreed to surgically remove my mets - almost unheard of.)

I was scheduled to have half my liver removed on the 3rd, and I work in a school. I came down with a horrible stomach bug on Sept 22. It put me out for two days, I was so sick. And, I was very weak after that (and still on chemo) so I was terrified they'd cancel the surgery. Then, I woke up and guess what? I had a sore throat! The next day I came down with a cold. Well, I knew for sure that I would have my surgery cancelled and I was pretty upset, to say the least. My cancer grows fast and I wanted that surgery.

I stayed home from work and sipped tea and rested. I would never normally stay home for a cold but I did. It never went into my lungs, so they did the surgery. I was almost recovered by the 3rd - I recovered pretty fast, mainly because I took care of myself.

They won't do surgery if you have it in your chest, so rest and try to recover. You have time, as I did. And, the one good thing about your situation is you can post-pone it a week or two if you have to. I know you don't want to and you may not have to, but you do have time.

I am home recovering from the surgery right now.

Take care of yourself!

(My blog is in my signature for those interested. It's two years of my treatment now!)

Hindsfeet · October 2011

Greylady, I am relieved you are getting the surgery. I haven't had the flu or a serious cold in several years. I've had a few sore throats without cold symptoms. When I have cold or flu symptoms, I take super Lyzine Plus, which contains several immune type herbs. Within hours of taking about 4 of them the symptoms disappear. Many of my friends are now taking them as well. You can buy super lyzine in at a health store and some local super markets carry it that also sell natural herbs, vitamins and organic. It's worth it.

We are all behind you!

cinnamonsmiles · October 2011

I appreciate that DCIS is being taken seriously as a cancer. I had DCIS, double mastectomy and node dissection. Based on the information I had about my cancer, the mastectomy was the right thing to do, no regrets, no questions, I knew right when the doctor explained it to me in the office and drew a picture of my cancerous breast that it was mastectomy. The road to a double was stressful at times, but when given the information after an MRI, another easy decision. No rads, no chemo. It seems like sometimes I feel like I don't really belong in the cancer club and that I have to justify my severe PMPS as my painful cancer journey. I have heard from some drs..."it's just DCIS" or "it's a pre-cancer" (not meaning pre-invasive but classifying it in the same class of cells as ADH). I had cancer, not a benign tumor.We cant please everyone all the time. What doesn't help one person, may help another.

thats-life- · October 2011

had to pop back to say hope your symptoms are improving ladygrey and hope you are feeling less weepy.

I also wanted to say that our stories are important and we do learn alot from each other. I was only trying to point out that scare tactics may not help in the early stages of dx...information is invaluable, and only here do we get the gift of the time and energy of others who have researched, or learnt through their own experience, I wish you all peace and success with your dcis decisions.

Patriotic · October 2011

I think TheLadyGrey just needs time to absorb all of this information. It's overwhelming for everyone. It's no fun have to get an expeditious PhD in BC.

This is not meant to scare anyone but my cancer was missed on a mammo. I have extensive DCIS (Grade 3) and one area where it turned invasive and spread to a lymph node. The scary part is that it was not palpable and I thought I mammo's were very accurate. Who knows how long it had been there? One surgeon opined that it had probably been there for at least, 3 years. My point is that I now have Stage III BC and a much more risky situation. I, too, had to grapple hard with the mastectomy issue. I fought hard against it but, unfortunately, it was unavoidable. I guess I just needed time to come to terms with the fact that I was going to lose my breast. Even with the
mastectomy, I still have to have rads, due to my age. I am more scared of the Lymphedema,
actually. But, I've read statistics that indicate even those with negative nodes go on to have
metastatic cancer around 30% of the time. The bottom line is that BC, or any other cancer, is not
to be underestimated or "messed" with. It's highly adaptive. It can become chemo-resistant and it's
characteristics can even change when it travels away from the breast (ER/PR/Her2+/- status). Also,
I can't tell you how many BC friends I've had that learned their pathology was discordant with what
all the scans reflected (found additional lesions, etc).

All this discussion about the "watch and wait" approach made me think of what happened to Steve Jobs. I did not know, until recently, that he learned about his pancreatic cancer 9 months before he had surgery. He allegedly opted for the "wait and see" approach. After diagnosis, he
attempted alternative treatment options until he learned that the tumor was growing larger. I can't
help thinking what he was thinking, if this is all true. Was it fear, arrogance, or just utter disbelief
that prevented him from having surgery? While the outcome may have invariably been the same, i
can only imagine this must have been the source of a great deal of regret. Hindsight is nearly
always 20/20. We just don't have that luxury.

TheLadyGrey, best of luck with your surgery and decision-making.

Deirdre1 · October 2011

All due respect.. pancreatic cancer and DCIS are no where near each other on the scale of cancers! It's difficult NOT to take a look at "wait & watch" when the medical community itself lays that out as an option... It is an option but there is a risk that goes with that option and obviously there are risk and losses that go along with the more severe choice of mastectomy.. DCIS is not understood well, in time it will be, but until it is understood (the way pancreatic cancer is) patients will be challenged for "overtreating" and "undertreating". We must do what our own voice tells us to do and that is difficult to hear when everyone has an opinion..

So, if you are stuck ,TheLadyGrey, my suggestion is to get in touch (NOW) with a therapist who can help you HEAR your own voice. This is NOT easy and I feel for you deeply!! Take your time and be true to your own voice!!! Best, Deirdre

Hindsfeet · October 2011

I aggree with Deirdre ... many voices can make your choice all the more confusing. A therapist may help you when wrestling with all this especially in the light of having to lose a breast... when it comes to lumpectomy vs mx. I'm not one to advocate over treatment, but I'm also not one to advocate leaving the cancer in the tissue. If the cancer is multifocal I don't think there's much of a choice.

Patriotic · October 2011

I was NOT comparing BC and pancreatic cancer. I was explaining my DCIS situation (Grade 3 and diffuse). AND that it turned invasive an now is Stage 3. So, I would be remiss in not providing my own experience with widespread DCIS. I also feel like she should know that there are scores of women on these boards who were told to "watch and wait" to later be told it was cancer. Obviously, those with DCIS have their own decisions to make. As one Onc told me, "Everything we do us weighing risk against benefit." I am not advocating MX. I would have done lumpectomy plus radiation, if at all possible. Best of luck with whatever is decided.

TheLadyGrey · October 2011

Thank all of who keep posting to me even though I lack the common courtesy to acknowledge your time and input. I'm not at my best. I feel like a cow walking down the chute to slaughter looking wildly right and left looking for a way out, except there isn't one.

I wish I had a better understanding of why there is tension between those diagnosed with DCIS and the rest of the breast cancer world. Perhaps it is the case that there is tension between other stages and I'm simply unaware.

I'm persuaded that given the profile of my cancer, "watchful waiting" is not an option. I did not figure that out in the first five minutes after diagnosis.

Nor did I have the help of any medical professional, including my two (2) doctor brothers in coming to that conclusion.

My doctors have told me NOTHING aside from "this will be invasive within 12 months" and "will you be having one breast cut off or two?"

Here are the things that have NOT been mentioned in connection with deciding my surgical option:

1. Grade 3;

2. Comedonecrotic;

3. ER-PR-

4. 3.2 cm (aside from cosmetic considerations)

Ummmm.....I think that combo is actually RELEVANT. I think someone should have MENTIONED to me that that is not exactly the best DCIS profile as in it is about the WORST one out there.

If this thing is invasive, I may have a Real Problem - and I don't mean chemo - I mean this stuff is MAD.

I read on the triple negative website today that a study has found correlation between TN BC and high stress in the five years preceding diagnosis.

Yea - I can for sure check that box.

I'm not a Suzy Sunshine sort of person (I know you find that a shocking revelation). I manage my fear by setting the bar low - so here is the "win" - HER+ microinvasions.

I do not believe that for one mad minute.

jazz3000 · October 2011

"The main difference between invasive breast cancer and ductal carcinoma in situ (DCIS) is that DCIS rarely if ever is found in lymph nodes under the arm and it has a higher cure rate. Only patients who relapse with invasive disease have a risk of dying from their cancer." I'm not sure why you think individuals with invasive cancer are at odds with women with DCIS. I think any cancer invasive or not needs to be looked at and dealt with.
I'm glad you've finally come to terms with what you need to do and hope your health has improved in the last few days. Once you've passed through this I am hoping your future holds more promising times.

StillKicking · October 2011

Lady - First, I love your way of looking at situtations and writing. Must be the lawyer in you.

2nd - I was diagnosed with multifocal DCIS in 2007. Due to family history I elected to have a bilateral mast. This turned out to be a good decision as the final pathology revealed an invasive component. However, the BS said I was overeacting and the onco understood the decision. You will ALWAYS find multiple opinions. The final one will be yours.

3rd - No matter what the final diagnosis you already have a REAL PROBLEM. Once you have been diagnosed with cancer, be it DCIS or Stage III or IV, you've got cancer.

It seems like you've got a pretty good team (great mind, brothers and doctors) to guide you through the process. Best of luck with your decision.

Anonymous · October 2011

Greylady-i'm coming late to this but agree with still kickin. It took three biopsies,two of them surgical, to find the invasive component...and it was also her2+.

If I had gone with the first surgeon's finding of lcis(the lobular version of dcis) and just taken tamoxifen as recomended by the surgeon, I would be in a way worse situation.

My bff, a nurse practioner, calls your version and mine lazy cancer. She forced me to go to someone else, and after an mri that showed another small spot, an ultrasound biopsy that was too clear, a second surgical biopsy found the invasive component.

In the meantime,I researched everything 24/7, like I was doing thesis papers, prepared pages of questions by topic, and faxed them in advance of my appointments to facilitate them. Because I was her2+, i had to have chemo with herceptin. No radiation because I decided on a bmx.

However, before making that decision, I interviewed three breast surgeons and four oncologists, and one radiation onc before deciding on my plan. I only interviewed one plastic surgeon because i liked him so much at the first appt, I cancelled the others and settled on him.

Everyone is right, it is your decision, and like you,I hate, hate, hate not having ccontrol. The research is the one place you do have control and armed with new knowledge and information, you will make the correct choice. For me, the scariest part is the her2 component. I am still on herceptin and nervous about its ending.

If you aren't happy with the info you are getting, see another doctor. You should expect your pathology report and for them to explain all of it and break it down. I called the pathologist also with some very specific questions also.

Personally,if you are her2 positive, i would not watch and wait. Cells go crazy when surrounded by that. all my treatments so far have been way less worse than I expected.

Best wishes are sent your way as you decide.

sweatyspice · October 2011

Here are the things that have NOT been mentioned in connection with deciding my surgical option:

1. Grade 3;
2. Comedonecrotic;
3. ER-PR-
4. 3.2 cm (aside from cosmetic considerations)
Ummmm.....I think that combo is actually RELEVANT. I think someone should have MENTIONED to me that that is not exactly the best DCIS profile as in it is about the WORST one out there.

Well.....if you were Grade 1, ER+/PR+, and 1 cm, they'd still want to remove it surgically. (And I suppose you could argue, depending on your age and general health otherwise, whether that was overtreatment). Once it's determined you have DCIS of any flavor, next stop medically is surgery. Period. Most doctors will see no need to get into a discussion of the pathology details if the treatment plan won't be affected. Plus, in my experience, most women don't ask questions and simply do as they're told.

Being the subtype of patient who's reading the medical literature and asking "why"... some Dr's do well with me/us and some have no patience.

I agree that someone in a white lab coat should have explained the abovementioned factors to you. They may not see it as relevant in making a surgical decision, but it would obviously be helpful in your emotional acceptance of the situation.

The first surgeon I fired, among other things, responded with something like "now you're getting into unnecessary details" when I asked what cribiform and the other cell types listed on my path report meant. Unnecessary my ass. I'm not letting anyone with an x-acto knife near my tits who isn't willing to explain EXACTLY what they're planning to do and why. In as much damned detail as I seem to need.

They sent me to, I think it was a nurse practitioner associated with the practice, to get questions answered without having to schedule yet another consult w the surgeon I finally chose. The NP said she'd been doing this for 15 (?) years and had never been asked the questions I was asking - she didn't know the answers. I scheduled another surgical consult, my surgeon answered those questions without difficulty. I was a huge pain in the ass as a patient, I'm sure. I needed to be. Nature should learn not to have lawyers get breast cancer, we're too much trouble. Or maybe we need to be humbled. Don't know.

But since you do have all those unpleasant factors, and they're already suspecting invasion, please force yourself into the OR.

Personally, I'm concerned about the unbiopsied area on the other breast, the one you've blown off, and I hope that choice is one you don't regret. But it's YOUR choice to make.

You already know we have your back to the extent that's possible, and we're here to bear witness to your thrashing and screaming. We've all been there, done that. God knows I have.

sweatyspice · October 2011

To Coolbreeze:

I just wanted to say how sad I was to hear you'd developed mets and how glad I was that you were able to have a successful surgery. I'd thought about posting on your surgery thread but didn't want to open old wounds.

The comments here, in LadyGrey's thread, made me go back and revisit that long-ago blog post. The premonition of LadyGrey's apparent reaction to your blog was exactly what pushed me over the edge all that time ago. I'd thought, "Someday, some woman with newly diagnosed DCIS is going to read this, and what she is likely to take away from it will not be good." My only way of trying to correct that was by adding comments in the hope they'd be read, too.

Obviously, given LG's reaction, I failed as well.

I went back and re-read the blog entry and all the comments. I was too upset and hurt by your remarks and freaked out by my own situation (I'd probably just finished rads) to write a clear and coherent argument. My comments ramble over the place, a lot of it doesn't make sense, not exactly a helpful guide.

So....I just wanted to acknowledge that I didn't do a fabulous job either, and extend an olive branch.

I wish you health and happiness, always. I hope you've always known that.

And now that I'm crying and hideously late for work, I'll blow dry my hair....

Anonymous · October 2011

Sweatyspice....you sound like a woman after my own heart, although I am not a lawyer. At my bmx, i also wrote each doc a letter teling them what I expected.

My ps comes into my appointment and says lets see the list. Lol. He gave me his cell number and told me to ask him before making decisions based on internet reading, good or bad. My husband says we have a brother/sister relationship. I actually think he likes answering the questions. I told him it will keep him on his toes.

My indian onc answers everything and is so caring, but I think he questions when I want all the answers as he thinks some of it can be unanswerable. True...but I would rather hear that it is not a finite science than "you don't need to know." he makes me take his yoga class and i admit, it has helped.

LadyGrey.....you will make the right decision for you, but do it after you have armed yourself with knowledge, not just from this site, but others. Then, your next decision is to decide if you will be able to mentally live with that decision if it doesn't work.

I read the natural biiks and the medical books, and haven chosen to attack it with standard medicine followed by natural alternatives. If I have a recurrence, I will again drink wine and eat chocolate everyday!

TheLadyGrey · October 2011

I am at the end of day 8 post left breast mastectomy with tissue expander installed and I am struck hard by the following:

1. Beesie: I've been here for six weeks or so. I am about as cynical as they come. I cannot believe the time and energy this woman puts into this forum. There have been times when I have SERiUOUSLY been hyperventilating with anxiety, and I know that isn't over, but t I also know I can track her posts down and say "1 cm, I'm bald and vomiting, anything under that is maybe ok."

2. I'm in day 8 of waiting for the post surgical path report - my mastectomy was 10/20 at 8:15 am. I was in the hospital for exactly 26 hours total. I'm wondering what you have to get cut off these days to merit 48, or even (gasp!) 72 hours in the hospital. Since I don't really remember any of it, I can't say I wish I had been there longer.

3. I find the caring follow up from the breast surgeon, plastic surgeon and hospital so.....what's the word? Oh, right, there isn't one. For all they knew, I died.

4. I feel the need to publicly apologize for failing to be off painkillers by Monday. Generally, I will achieve the given goal. In this case, no one told me that within 4 days of having my left tit amputated and this thing inserted it's place, I was supposed to be pain free.

I found out that I had failed when I emailed the surgeon's nurse. As an aside, I assume surgeons will be Asperger's like - have yet to meet one otherwise. They compensate by hiring people who have some trappings of humanity.

I hold my cards VERY close to my chest (or what's left of it) and I DO NOT whine. However, I hadn't pooped in a week, none of the usual stuff worked, none of the extreme stuff worked and I was...well, I don't know what I was. I will tell you that in my 51 years of life, through three pregnancies, I have never once mentioned this function to anyone. To bring it up was, I think, indicative of how utterly lost I am in this world of breast cancer.

The email I got back fro the nurse said, and I kid you not, "Our patients do not generally need painkillers when they are this far along. When yoat stop the painkillers, try magnesium of something (can't remember)."

Well, me being me that was the end of the painkillers and I waited until my husband went to sleep and drove to the 7-11 and bought ex-lax which does work for like a really long time but what are you going to do?

I wish I could express to that woman the level of desperation that was present for me to even ask the question. I think this is, in fact, the nightmare that seriously does not end.

Although I do not have the final path report I just KNOW based upon my incredibly sucky profile that "they" are going to try to make me do chemo, in fact "they" without consulting me (SURPRISE!) sent me an email that my appointment with my oncologist is Nov. 8.

I won't. I just won't. I can deal with anything up to but not including being manipulated and patronized.

I cannot even begin to consider the long term emotional damage that acceding to what "they" want will do to my not all that stable to start with emotional self.

I'm just sure if "they" cared enough to where their opinion might be of interest to me, one of "them" would have checked in in the last eight days.

Sigh. I'm really, really tired.

Hindsfeet · October 2011

Graylady, I can't believe that the doctors abandoned you. Horrible! Usually you have a post op appointment in seven days. I don't know about you, but I wouldn't assume anything. This is my fourth dx so I'm pretty much in charge now, where before I blindly followed at least initially. I don't asked anymore. I go in with studies, facts and pretty much know what they are going to tell me. They seem surprise I am well aware of the different treatment options, and what and why I want or don't want treatment. I am doing my homework now so when I see the Plastic Surgeons next week, I know what he's talking about. I've learned a lot in the last few weeks...still learning right here from all the reconstruction ladies...and other threads that concern what I am going through right now.

Yes, when going through surgery, and followup bco is a good place to be. Most of our friends don't quite understand what we are going through or don't care to know...nor do I want to bother them with questions I'm wrestling with...besides they wouldn't understand. So...even if we can't get a hold of our doctors this is a good place to vent, and a place to find support.

I do hope your pain lessens...I'm right behind you...mx to come in the near future. I dread it!

jazz3000 · October 2011

Lady Grey you sound really exhausted. Doesn't sound like your getting any rest? Constipation, pain, hormonal changes that come with the loss of the breast, and not being able to rest when you do rest all go into making most of us cranky the first couple of weeks.

I was wondering if you've tried calling your Primary Doctor and sharing the situation? He or she could help a lot with the issues of pain and rest and constipation. Bypass the noodlehead who has obviously never had a breast removed or she would know the pain lasts a lot longer than 2 weeks.

As for the vulnerable circumstance we find ourselves in, where it suddenly seems nothing is sacred, BC has a way of doing that. It tramples on a lot of our personal dignities and just sucks. I'm sorry you're having to go through that. I'm especially sorry the Surgical Team you're dealing with lacks the compassion needed at a time like this.

Just take good care of yourself. Rest even if you can't sleep. Treat yourself to something special and that you enjoy. Take a walk just to change your vantage point and get some fresh air. It also helps to move the bowel. (The bowel is a muscle that needs to be exercised. Little things will help you through this. Tomorrow will take care of itself. The path report will eventually be there and the onc and the discussion of will you or won't you. Today just take care of yourself. Your in prayer and thought.

Anonymous · October 2011

LadyGrey...right there with you on the constipation! They neglected to tell me the first time, or if they did, I don't remember. I thought I was going to have to go to the emergency room because nothing was working. Now I start popping laxatives three days before hand. I'm not sure about ex-lax, but my primary physician said to use Miralax...said it is a little gentler on the stomache.

Not sure why they would give you a hard time about the pain pills. I had a pain pump that lasted four days, which I am sure is the only reason I gave up pain pills so quickly, and I still took them at night as I was a stomache sleeper and couldn't get to sleep without one.

I am also very surprised that you didn't have to see your surgeons after 7 days. I had to see both the BS and the PS. PS is very picky.

For me, it is 5 days until the implant surgery. To say I am looking forward to getting rid of these rocks is an understatement.

My suggestion is to get on the phone to your doctors and demand some follow-up. I always think the squeeky wheel, when squeeked in the right way, gets more results than the compliant one.

Evebarry-we operate the same. I do all my homework before I have an appointment. My PS walks in now and holds out his hand for my Ipad to read through the questions! He's the best.

Beesie · October 2011

TheLadyGrey, I've been away and haven't had much time to catch up on everyone but I was looking specifically to see how you were doing. I'm glad to see your most recent post. Good that the surgery is over and done but I'm sorry that you feel abandoned by your doctors. And the reaction of the nurse that you emailed was completely out of line. The thing about pain is that we are all different. I didn't have a lot of pain after my mastectomy/expander placement but I know that this was only because I was lucky. I've read enough from other women on this board to know that many women do experience much more pain than I did - either having extreme pain immediately after surgery or having pain continue for a longer period of time (more than just the first couple of days). Even though we go through the same surgery and treatments, this is an individual process and none of us should base our progress or expectations on someone else's experience. I'm really sorry that you've had a lot of pain; honestly, from what I've read on this board, that's not unusual. The nurse who responded to your email was simply an irresponsible unthinking idiot.

As for constipation, yeah, that's one that they often don't warn us about in advance. Here in Ontario I had the benefit of a home care nurse visit every day until my drains came out - the nurse took my drains out at home, which was great - and I was able to raise this with her. The nurse's suggested home remedy for constipation was red licorce. I liked that much better than milk of magnesia or ex-lax.

Good luck with the pathology report. And don't take the fact that an appointment has been set up with an oncologist as being a sign of bad news. It's standard procedure to see an oncologist after the surgery; my surgeon's office set one up for me too. The role of the oncologist is to look at the total treatment picture and discuss with you which treatments, if any, you might want to consider. Seeing an oncologist doesn't mean chemo. With pure DCIS, chemo is not in the picture. And even if you are found to have a small area of invasion, that still doesn't mean that chemo will be required - lots of women with invasive cancer don't get chemo. It's all a question of the aggressiveness of the invasive cancer and whether there is nodal involvement. Personally I was glad to have my appointment with the oncologist since he actually suggested that it was not necessary for me to take Tamoxifen - and I had worried that it would be recommended. He explained his rationale and took me through my risks (risk of recurrence, risk of a new cancer) and then left it to me to make the decision. I had a follow up appointment a couple of weeks later, told that I agreed with him ("no" to Tamoxifen) and then we agreed that there was no reason for me to continue to see him. He gave me a lot of really good information about my diagnosis, risks and prognosis and I left feeling really comfortable about what I was doing (or more to the point, not doing, i.e. not taking Tamoxifen). So don't assume that the appointment won't go well or that the recommendation will be something that you don't want. For most of us who have single mastectomies for DCIS or DCIS-MI, even if additional treatments are recommended (all oncologists are different, after all), these treatments are considered to be optional since the primary benefit is protection of the remaining breast. Only if you have positive or really close margins after the mastectomy, or if you are found to have a more serious invasive cancer, is the situation likely to change.

It's a couple of days since your post so I hope that you are feeling a bit better. I know that the whole situation stinks. It's not something that any of us would choose and for those of us who usually have tight control of our lives (I'm one of those too), it's a completely foreign experience to not be in control and even worse, to realize that we have to do something that we really don't want to do (I didn't want to have a mastectomy any more than you did). But you will get through it and one day this will be over and you will be back in control of your life. Having gotten through the surgery, you are one step closer to that.

CLC · October 2011

Beesie, every time I read your posts, I am reassured. I have a strong science background (I am a biology teacher) and pick up medical info quickly. Did my reading last year when I was dx with adh and had an excision, preparing for the word "cancer" on my path report after the excision. Became pretty well versed in a short time. Given the all clear, only ADH, all removed last year and promptly put it all to the back of my mind. Then six years to the DATE after your dx, I was dx with DCIS. I had to bring it all to the fore very quickly...and everytime I read your post, I was reassured that I understood things. I am so grateful to you for your posts. You have been a tremendous help to me. Now, I am in the position of declining tamoxifen, much to the disagreement of my MO. Having just read your post here, I am once again reassured. You are so knowledgeable and so willing to share. Thank you.

CLC · October 2011

To TheLadyGrey...I hope you are doing well. Our surgeries were only less than 2 weeks apart. I may be low grade, and maybe you wouldn't have chosen mx in my boat, but, still, we do have a lot in common....Unfortunately for us both. At any rate, I hope you are healing well and your pain is going... Claire

vmudrow · October 2011

LadyGrey - that's horrible that your doctors have not checked on you. Mine called at home the next day and I saw both the surgeon and plastic surgeon 4 days after surgery - call and demand an appointment. My PS also told me beforehand to take something for constipation (can't remember the name, over the counter though). Hope you are feeling better today.

CLC - when I read post like yours, it makes me think I made the right decision to have PBMX when I was diagnoised with ALH. It seems like often times ADH or ALH turns into DCIS or LCIS or cancer - hope you also are starting to feel alot better.

CLC · November 2011

vmudrow...when I read a post like yours, I wonder if I should have considered bmx more. But I have never had so much as a calc on my right breast. I guess I was willing to watch and wait and conceivably risk worse. But I will be watching. Carefully. I can completely understand the decision to do pbmx. If I get adh on the right, I will be seriously considering a pmx on that side... I am glad that you have made the right choice for you. That is something we can all hope for in this crazy bc journey.

And thank you for the well wishes. I am feeling pretty well. Regaining full rom (thanks to physical therapy that no one suggested to me and I had to advocate for myself for) and beginning to run again...

TheLadyGrey · November 2011

First, CLC I would never fault any woman for whatever decision she makes in the BC Fun House. I don't think people in general have any appreciation of the decision trees with which we are confronted. "You have X cancer, you do Y then Z". I still cant believe that treatment decisions - as opposed to whether to treat at all - are left up to me! I'm just a person - how the hell am supposed to know when the doctors don't? This isn't like picking fabrics (something else I suck at).

Speaking of which, I got my "Final-ish" path report today, and let this be a lesson unto those of you assuming your biopsy results mean anything besides you need surgery.

The breast surgeon put the report in an envelope with other records for me to take, tantalizingly out of reach. She clearly did NOT want me asking her questions on a line by line basis. She went over the bare bones and did the lateral pass to the oncologist upstairs.

So here we go:

Two "patterns", one low grade and one high grade, and I should "please note that both tumors are related to each other." Well, that clears that up!

6 mm invasive - no breakdown on high/low grade.
ER+ (2-3+ greater than 90% positive)
PR+ (1-2+ about 70%)
HER2++ (2-3+ greater than 75%)
FISH panel positive (4.04)
Nottingham Histological grade: 4 & 9
Margins good
pT1b, pN0

I have a hard week of Internet medical school ahead of me....

Surgeon said oncologist will recommend chemotherapy because these days "everyone" gets chemo (interesting) and may recommend seeing a radiation oncologist but she, breast surgeon, would not do radiation if she were me.

I was then dismissed to return to her or the plastic surgeon in 6 months.

Well, thank the ever loving Lord for that small mercy.

Oncology appointment is a week from today. Any ideas what sort of chemo might be recommended on these facts? I'm 90% sure that I am, in the immortal words of Nancy Reagan, going to "Just Say No", but I need to be ready.

As an aside, I now notice the number of women in stylish Dallas sporting headscarves and ball caps. Over treatment issues aside, I vote screw "Pinktober" and go with "Baltober" and bald every other month too. I suspect the sheer numbers of bald heads would get attention in a way that Pink never will.

Easy for me to say, right?

I'm pissed. I can't believe that in this day and age the best they have come up with is cut it off and poison us while the strides made in treating prostate cancer in ways the maintain quality of life have been enormous.

Hey you researchers and drug companies out there- you don't appear to be TRYING very hard - gee, might that be because the vast majority of you don't have breasts?

Always the cynic here.....

Deirdre1 · November 2011

Not the cynic from my perspective TheLadyGray - I feel exactly the same way.. and when they offered me the SAME TREATMENT that they offered my father 30 years ago I was pissed too.. what the F___ is all that pink money being used for!!! I know they have made small headway but you are correct it just isn't enough... And I'm so sorry you are dealing with this - hang in there and allow yourself to feel angry - it's a real honest anger! Best, Deirdre

Beesie · November 2011

Well crap.

TheLadyGrey, I knew from your posts that you were a rare and unusual individual (and I mean that in the kindest and nicest possible way - after all, I share many of your traits Wink ) but damn, did you have to prove it by ending up in the 5% group whose diagnosis and treatment changes more than just a little once the final pathology is in?

First Blair's wife, and now you. If I hadn't been on this board for so many years and seen so many situations where this didn't happen, it would be easy to think that that happens all the time. It doesn't of course, but the risk is always there. Honestly, I really hate that I turned out to be right when I posted, back when you were thinking about taking the "wait and see" approach, that there was no way to know if you actually have pure DCIS until all the cancer cells have been removed. I would have been much happier to have been wrong. Crap and double crap.

Well, it's good that you decided to have the surgery. And at least the margins are good!

By the way, coming from a family where the men have either had prostate cancer or are high risk and have had their scares and now are being monitored closely, believe me when I tell you that that the progress made there is really not so great. The parallels with breast cancer are striking, in terms of how early diagnosis is being thought of and how debilitating and life changing the treatments can be. It doesn't make our situation with breast cancer any better, but don't think that the boys have it good. They don't.

Wendyspet · November 2011

As to chemo - since you are triple positive, check out the triple positive forum. I did not find chemo too bad at all. Some people have alot of the side effects, but I was one of the lucky that had only a few. And I kept working throughout.

What to do, what to do.....

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