overwhelmed

lottie

I was diagnosed with IDC on July 2nd. tumor is 1 cm, inconveniently located right behind my nipple. ER and PR positve, HER2/NEU 1+, so that's negative, right? no overexpression... Tumor is grade I/III

I'll see an oncologist and a radiation oncologist next week, a plastic surgeon on the 20th and will probably have right side mastectomy on 7/27. I've been pre-occupied with the issue of reconstruction -- my surgeon was insistent that I consult with a PS right away. I'm scared and confused. My priority is to get rid of the tumor, find out the pathology and whatever additional treatment I will need. I am ambivalent about reconstruction and wonder if anyone else felt the same way? Tissue reconstruction sounds so invasive and an implant doesn't seem any more appealing. In addition, I have rheumatoid arthritis and my immune system is compromised -- healing could be a problem. And, reading this forum I see that if I need chemo after surgery it will be far more challenging than the dilemma of reconstruction. I guess I'm just freaked out and overwhelmed. And, I'm lucky, lots of friends and support, generous employer and good insurance. I know I'm blessed with those things. You all sound so courageous and so wise! I'd truly appreciate any guidance on any of these issues. In the meantime, peace and health to all of you!

Anonymous

Oh, Lottie, I'm so sorry you have to go through this.  I think getting diagnosed was the worst part for me - everything else has been a piece of cake compared to the fear and confusion that goes along with hearing you've got cancer.   Everyone knows exactly where you are right now.... and we will all tell you the same thing: We're so very, very sorry you're now a member of the club that NO ONE wants to join.   But you can get through this, and even find greater meaning in life along the way.  I can tell already you've got a positive attitude, with your comments about your friends and family, insurance and your employer.  All of that will help you immensely!

You are about to go into the "collect, collect, collect" information phase.  John Link's book on breast cancer is my favorite; others prefer Susan Love.    Why not get 'em both?  

Obviously I'm not an oncologist, but one centimeter is small.  Hopefully your nodes are clear and you're a solid Stage One.   Also, it sounds like you're triple positive, if only mildly HER2+.  That depends on how your oncologist interprets that "1+."   I don't know how the rheumatoid arthritis impacts all of this, but my understanding is that being triple positive for all those receptors is a GOOD thing, since it means you've got the full range of treatment options available to you.  The tumor grade is a little weird - it's usually either I, II or III.  Maybe they're not sure? 

Actually, here's one thing to remember.... they really don't know everything until they've got it out of your body and sliced into pieces for slides and they've checked your nodes (you'll probably have a sentinel node biopsy when you have surgery).  Even then, you'll find that most of this isn't "cut and dry," unfortunately.   We all deal with uncertainty in our decision making, so start trying now to trust your gut. 

As for reconstruction and surgery, yeah, making these decisions sucks.  Consult with the PS, but remember that you don't have to do reconstruction immediately.  You can do it later.  Also, there are skin-and-areola sparing mastectomies that remove the nipple, but leave the cosmetically important tissue intact.  If cosmetic results are important to you - and most of us want some kind of normal looking nipple - you might ask your surgeon if s/he performs these.  I chose implants and remain happy with them.  If you send me a private message, I'll send you my email.  I am happy to share pix of my reconstructed "girls."   

By the way - my mastectomy wasn't bad at all.  I had minimal pain and recovered far more quickly than I ever expected.  I think most of us will tell you that the fear is much, much worse than the surgery - and that fear is the worst part of all of this; once you're tackling it, it's not so bad. 

Take a deep breath.  Your life is going to change dramatically in some ways - and in many others, it will continue on normally.  You are going to be fine.  

Laura  

nelia48

Lottie, I know how hard this must be for you right now, but you WILL get through this, I promise.  I did, and I really thought that there was no way I could ever do all that was ahead of me a year ago!  But I did it ---- one step at a time, one day at a time. 

I know the dr.s are throwing a lot at you right now.  As for the surgery and reconstruction, a lot depends on your own self-image, your age, where you are in life, etc.  I'm 60 years old, and opted for the mastectomy without reconstruction.  After that agonizing decision, I found out from the surgeon and oncologist that there was no way anyways that I could have that done, so it didn't matter in the end.  One thing I wish I had done, though, was have BOTH taken off.  I've come to hate the loppsidedness, the fear of it returning, etc. 

I, too, have the rheumatoid arthritis and a depressed immune system, but I came through the surgery fine with no infections, etc., and it did heal up quickly.  No problems there.  Like Laura said, I was surprised at the speed of healing, and had almost no pain.  Just a lot of stiffness, and those stupid drains were more painful than the surgery, really.

I just got my breast prosthesis and bras, and I'm just as happy with a fake boob.  I'm having no problem with how I look, etc.  So the decision will be up to you, I guess. 

I had my chemo first, then surgery, and then radiation.  It took some time to get healed up from the radiation burns before I could put the bra on.

Let us know what you decide and how it all goes!

Anonymous

Nelia, you are amazing!  I know everyone on the board thinks so - you're such a lovely person.  I'm glad that you're happy with your new girl!  L.

Erica3681

Not so long ago, breast surgeons hardly used to mention reconstruction to their patients, let alone push it. Now the pendulum has swung too far in the other direction. At a time when you're understandably overwhelmed by your diagnosis, when treatment of your cancer should be uppermost in your mind, you suddenly are pushed to consult a plastic surgeon and have immediate reconstruction.

For those women who absolutely know they want reconstruction, that approach works fine. But many women aren't sure they want reconstruction and would be better off delaying it. My breast surgeon told me that the most unhappy patients she's had are those who were ambivalent about reconstruction but went ahead with it and then regretted their decision. 

I just want to assure you that there are many women out there, me included, who felt we could feel whole and happy without breasts. I did consult a plastic surgeon before my bilateral mastectomy, but I decided that reconstruction wasn't right for me. I asked my breast surgeon to make my chest and incisions as cosmetically pleasing as possible and she did. After almost three years, my scars are nearly invisible and my chest is nice and flat. Contrary to what you may read on these boards, there's a wide selection of breast forms available and many are very lightweight and comfortable (the older forms were hot and heavy). I look completely natural in clothes and I can wear virtually all of the clothes I wore before.

I felt so passionate that women should be advised that non-reconstruction can be a positive alternative to reconstruction that I created a non-profit website, BreastFree.org. You can read Personal Stories and see Photographs and get support and information about living breast-free. Many doctors now refer their patients to my site. Even if you think you may want reconstruction eventually, you may want to delay that decision and focus on treatment of the breast cancer itself.

Best of luck in making this difficult decision.

Barbara 

Leah_S

At the time of my mastectomy, I did not know if I wanted reconstruction. I jsut wanted to deal with the cancer.I have since had chemo and will start radiation in a few days.

I am leaning towards prophylactic mastectomy on the other side with reconstruction at that time, but still have not made a final decison.

The important thing to remember is that option is always there if you want it later.

Leah

lottie

Oh my! on the holiday and everything I get 3 wonderful replies to my post within an hour! Thank you, thank you. Nelia -- so nice to hear from someone with RA. Wierd thing is that I've been w/o bi-monthly remicade infusions for more than 10 weeks now and have very very little pain! I've been putting it off while going through this ... I don't think I'll have another treatment for a long time now ... Kaidog and Erica, thanks so much for this information, I really want to focus on the cancer. I'm 51, and reconstruction just really isn't my priority right now. I truly respect my surgeon's advise to consult a PS, but, I really feel like I can contend with some lopsided-ness ... nothing in my life has ever ever been perfectly balanced, so I think, why force it?????????? Happy independence day and many thanks

otter

lottie, I was 55 when dx'd with a 1.8 cm IDC in my size 34B/36A breast.  I chose mastectomy rather than lumpectomy/rads, and my surgeon asked what I thought about recon.  I told her I was not likely to want recon--I wanted the surgery and recovery to be as simple and straightforward as possible.  I wanted to get on with my life.

My surgeon said that as long as I was not 100% against recon, she strongly advised that I talk to a PS.  She wrote me a referral to a PS she worked with regularly.  His specialty was recon for women undergoing BC surgery.  My surgeon thought that it was important for me to find out what all the recon options were, and which ones might be appropriate for me, just in case I changed my mind some day.

I think her advice was very good.  After talking to the PS, I ultimately decided not to have recon.  Like Erica/Barbara, I am comfortable with my decision.  But, I am grateful that my surgeon urged me to talk to the PS so I could make an informed decision.

otter 

lottie

I am very grateful that my surgeon advises that I take the time to speak to a PS, and I will do so. Right now, I think I will not have reconstruction but I think it's a credit to my surgeon that she wants me to get informed about all the options. I can't say enough about this surgeon, I knew she was incredible the 1st time I met her, very intuitive, smart and compassionate. I realize not all the docs I see will be that way, but, as we all know, 1st impressions are powerful and I'm so happy to have hooked up with this doc.

Anonymous

Lottie, I'm so glad you have a great surgeon that you trust.  I hope you find an oncologist you really like, too - that's important, because if you end up doing chemotherapy you'll be seeing her/him very frequently. 

It sounds like reconstruction is a low priority for you.  That's a great place to be! You can always do it later if you change your mind, after all.  And it's a breast, not the left hemisphere of your brain, right?

One thing I found after my surgery - a big, super-soft, body-length pillow was the best recovery tool I had.  I could wrap myself around it so that I didn't have to sleep on my back all the time.  That was a lifesaver since I had a double MX and I'm a stomach and back sleeper...  You'll want pillows, straws for drinks, and lots of good books.  Nelia's right - the drains are the biggest pain in the rear, just because they're gross and inconvenient.  The less you move, the faster you'll be rid of them (I moved a lot and had mine in for three *&!#$ weeks).  

Try not to worry too much... I know it's hard, but you really are going to thrive. 

HUGS, HUGS! - Laura 

Erica3681

Lottie and Otter,

It sounds as if you both have surgeons who approached the issue of reconstruction in a thoughtful and helpful way, which is wonderful. I didn't mean to come across as against a surgeon suggesting a PS consult. I myself had such a consult and found it very helpful. What upsets me is stories I hear about surgeons really pushing their patients toward recon, from a belief that they won't heal emotionally without it. Even then, I believe the surgeons think they're acting in their patients' best interests. But it can be difficult for a woman who's feeling ambivalent about reconstruction to decide against it if even her doctors are telling her she should.

Lottie, you sound as if you're really thinking your options through. Please keep us posted on how you're doing.

hollyann

Lottie, welcome to the club noone wants to join...Sorry  missed your post last night.......As one of the ladies who chose reconstruction I have to say I am very happy with the results......That being said, I have a sister who had stage 2b/3 (they coukdn't make up their minds at the doc's office) who decided on just a mastectomy and no recon and she is very happy with her decision too.......I am glad I had all the options I had...I had the TRAM flap reconstruction bilaterally......With my family history I didn't want to have to have another mast ever again!........

I wish you a quick recovery from your surgery and treatment what ever you decide to do...It really all comes down to a personal choice.......No two people are alike and no two surgeries are alike......Please keep us posted...........

nelia48

I didn't have any "emotional scarring" by not having reconstruction.  It was strange, though.  As long as I was going through treatment ---- like healing from surgery, getting scans, then going through radiation, no hair,  etc., etc. ---- I was just fine without a bra, loppsided, etc.  I guess I unconsciously expected people to just "know" that I had breast cancer and I was "dealing with it" best I could with my hats, etc.

But I remember a few days after radiation was over and I was "done" with it all, I began to feel a little self-conscious when I went to the grocery store, etc.  I was starting to go with no hats, and somehow, that registered in my brain that I also needed two boobs.  Not that I wanted the reconstruction.  In fact, I was wishing more and more that I had had BOTH taken off.  I was NOT looking forward to a bra and this heavy prosthesis thingy.  I just got it last week, and I must say, I feel like a horse in a harness for the first time.  My ribs on the mastectomy side are sore, and I felt like it was just digging in.  Add to that, the weight of that boob in there, which felt like 50 pounds of wet sand, and I was NOT a happy camper and it came off the minute I came in the house.  I decided it's for "show and tell" only --- when I'm out and about.

I also found it strange that after my mastectomy, I was perfectly comfortable to whip up my shirt and show anyone and everyone who wanted to see what it looked like.  Seemed that I lost all my modesty.  During radiation, I burned to an extra crispy critter, and I showed everyone.  Funny, because I used to be the most modest person in the world and kept everything well covered!

But I am VERY understanding and sympathetic with anyone who feels the need for reconstruction surgery and the need to look natural and "right."  Since I'm older, not married, etc., it just was not an issue for me, and knew it would not be afterwards.  Consults are a good thing, but I agree with the above posters ---- as long as the consult doesn't turn into a sales pitch!!!!!  I'm not good when I'm backed into a corner with a sales pitch thingy!  I panic with car salesmen, etc.!!!!!!

lottie

Hi All, I just wanted to say thank you again for the support and the information. I feel much more settled about reconstruction -- my ambivalence about it was pre-occuping my mind when, at least I feel, there are more urgent things to take control of, like the cancer! I am seeing a radiologic oncologist and a medical oncologist this week, surgeon again the week after and PS the week after that. Then surgery on 7/27. I wonder about radiation and chemo. I spoke to the nurse at my surgeon's office this morning who said that it isn't necessarily true that if one has a mastectomy they will avoid radiation. It depends. This is why I'm seeing both oncologists, I guess, ... they're trying to make the best assessment about what treatment might work for me after surgery. I wonder if this is even worthwhile since we won't really have any more information about the cancer itself until after surgery but I guess it is good to get ahead of the curve ...

I went to work today and got absolutely NOTHING accomplished, but it is great to have the distraction.

Best wishes to everyone

Charlotte (Lottie)

vision4utoo

Lottie

You sound positive and that is awesome! Happy to see some peace about you.  I breezed through Mastectomy and Chemo comparative to reconstruction, which was always worriesome to me and now that I am having delayed recon, Tissue expander isn't too bad ~ the worst for me is the length of treatment. Just want to be done (at least for a little while) with doc, hospitals, surgeries...by time I am done with last surgery for recon (what I hopei s last) I'll be at 2 yr mark.

pffida

I can relate to the decisions we all have to make.  Nelia, I laughed at your initial reaction to the discomfort of the prosthesis! 

 I knew from the onset that I didn't want reconstruction.  I was irritated with my surgeon after surgery because he left quite a bit of skin and tissue behind ("in case I want reconstruction"), even though I told him I didn't.  I have to be careful what bras I wear because of this.

 I recently saw a new surgeon to have my port taken out and I discussed the extra skin thing with him.  He said he could fix it for me (yea, another surgery!) and that he spends lots of time talking to patients ahead of time to discuss the outcome.  He doesn't leave extra skin/tissue and when doing reconstruction, you wouldn't use the skin anyway.  So, my recommendation would be to have a frank discussion with the surgeon ahead of time.

 I have not regretted my decsion for no reconstruction.  I have gotten used to the silicone prosthesis.  I miss my old "minimizer" bras, and sometimes wish I'd had a bilateral so both breasts would be smaller!

suzib

I also was just dx with IDC with a 1.9 cm tumor.  I had a lumpectomy 6/8/09 and 7 lymph nodes removed.  I am Stage I and don't need chemo, just radiation for 7 weeks.  I had my 3rd tx yesterday.  I have been on estrogen for 30 yrs due to a surgical hysterectomy at age 27 (I'm 58 now) I will be on anti-estrogen meds for 5 yrs.  I too feel a bit overwhelmed and am having a hard time thinking of anything else but this.  First I have to deal with the radiation, then how to live without my hormones, then I have to quit smoking.  I've got alot on the table right now but I think the key to getting through this is to take on crisis at a time.  My work has helped alot but I still need to cry once in a while, then I feel better.  It does get better every week emotionally because the people at the Mountain States Tumor Institute here in Idaho are awesome.  Also make sure you get alone-time to find peace within yourself.  Good Luck to you.

dalycity

Hi, Suzib:

My diagnosis was similar to yours, except the Her2 was negative. Now I am curious as to your Her2+ status. If it's positive, didn't your doctor want you to take a little dose of chemo, like Herceptin?

nelia48

Lottie, I had the mastectomy and chemo, and I had to have the radiation.  My oncologist just said I HAD TO HAVE IT!  Period.  Like there was no room for discussion.  So I went through the whole 6 weeks of that, too. 

Quetzalli

Hi all,

Nelia, like you after surgery and the path report was done, I was told that I had to have chemo and rads.  Additionally prior to surgery, my surgeon gave me the option of lumpectomy or mastectomy.  After a lot heart-wrenching searchings, on line, and talking to myself I decided that the mastectomy was best for me.  Good thing!  My path report came back IDC/DCIS, .7 cm x 1.2 cm, Stage and Grade III C, HER NEU2 -, ER ++++, PR -, full nodal involvement with 13 of 13 nodes +.

I, too, chose not to have reconstruction.  I'm happy with my decision, but must admit that some days I really do wish I was "balanced."  My prosthesis is fine, and I do not regret any one of the decisions I made.  I've been on Arimidex since September '05 and will probably need to stay on it forever.  I've been NED since treatment (TAC [I was in a phase 3 clinical trial] and rads), but sadly my tumor marker has started to rise.  There are some things going on in my life that might be causing that, so it's just the waiting game.  Repeat CA 27.29 every 4 weeks until it either starts to drop, or rises to a certain point that would require a PET scan.

Regardless of all that, I feel good, and very comfortable with the decisions I made, and I'm on a journey now.  Life is good!

Lottie -- I really commend your positive attitude and my prayers for you are strength and grace -- it appears you have the strength part of that covered.   Take care of yourself and stay in touch.

lottie

Hi Everyone - It's been a busy week. We spent 3 hours yesterday with radiological oncologist discussing whether she thought my nipple/areola complex was salvagable if I chose lumpectomy and radiation. Her opinion, as well as that of my BS is that it has to go. She also gave me lots of information about radiation, reconstruction after mastectomy as well as reconstruction after a lumpectomy. The lumpectomy option sounds like I'd end up with a breast that looked like a donut -- a big hole in the middle. In addition, some patients with rheumatoid arthritis like me have extra problems with radiation. This doc was very good and left me with tons of information. Today I saw the medical oncologist who folks told me was kind of a cranky, insensitive guy. I thought he was great. Very clear, humorous but straightforward and kind. We talked about taking tamoxifen after surgery and I learned that in order to do so, I'll need to get off Paxil, an antidepressant I've taken forever. That seemed like a pretty obscure piece of information so I felt grateful to get it ... it'll take some time to get off that drug and on to one that is more compatible. He also recommends the Oncotype DX test on the tumor after surgery to learn if chemo will be effective. I'd just read about that test and he said that if he was me & my insurer did not pay for the test, he'd pay for it out of pocket. Luckily I think it's covered under my plan. I'm still pretty sure I'll opt for the mastectomy and no reconstruction but I'm definitely going to the PS consult on the 20th to learn everything I can. I see my surgeon next week and we'll make the final plans for surgery.

I'm swimming in all of this information but I think I have it sorted out pretty well, for now anyway ;-) 

Quetzalli - thanks for your kind words and daisy6, thanks for your encouragement. Suzib -- time by myself is a challenge, but I know I need to take some, I've been distracting myself with all sorts of things, some good, some not so good.

ANyway, thanks to all, best wishes for health and peace. 

hollyann

gentle hugs lottie..I just found this thread.......So sorry you had to join our club.......It sounds like you have everything under control now.......Just wanted to lend an encouraging word and say hope all goes well with your surgery............Not much to add to all the lovely ladies advice....They did a great job helping you.....You will find a lot of great ladies here who have been around for a while....All of us have great advice and comforting words....((((Lottie)))))     Prayers coming your way for a speedy recovery........