Dis Breast Cancer Survivors - GAGWTA!

[snappy]

Monique,
I am truly sorry you are faced with these decisions.

For me, since I had areas of dcis in the two quadrants (upper outer and retroareolar), the standard of care as explained to me by two surgeons was to have a mastectomy. If it had just been in one area, I would have been offered the option of lumpectomy plus radiation since the area of invasive cancer in the upper outer was on .1cm. I was told that at the time (May 2004) that there have been some very small studies with women having lumpectomies in cases like mine so at least it is being studied.

I was glad to avoid radiation. I think it was also helpful not to actually have to wrestle with a decision on mastectomy vs lumpectomy.

I read up on everything and just prepared myself.

I have to say looking back that the surgery was not as awful as I feared.
Although I had 16 lymph nodes removed, all were clear, and I have not experienced lymphedema (I am however usually very careful with my left arm.) I think your attitude about having this type of surgery is greatly benefitted when no further evidence of invasive cancer is found after all the pathology reports are in.

I did not consider having double mastectomies at the time of diagnosis. No evidence of disease was found in my right, even after a had a needle biopsy (my 2nd opinion surgeon thought she felt something deep on my chest wall). Needless to say, I was half berserk until that I got that clean path report.
Having cancer in both was much more serious in my mind at the time.

I will say that I am considering at the least having surgery to reduce my right breast, whether or not I have reconstructive surgery on the left. One plus on the reduction is that the tissue removed is sent to pathology to see if anything is lurking. I did not realize how off center you are after a mastectomy if you are large breasted. Maybe having a double would have prevented this feeling. I understand it is easier for the plastic surgeons to match them if they do implants or tissue flaps on both at the same time.


If something does show up in the future in my right breast, I am not sure which surgery I would opt for. I tend to ask the advice of the doctor and my experience has been that although they will not tell you which option to do, if you ask them what they would recommend to a wife, mother or daughter in the same situation, they will answer you. I would not take the doc's advice if I was totally opposed to it, but it does help guide you if you are not leaning one way or the other.

I am also sending you a pm.

 

[Pea-n-Me]

** Monique, after re-reading this all I can say is I hope it's helpful and not completely irrelevant. Am thinking about deleting it but since I've spent the last hour writing it I'll send it anyway, maybe it will be helpful to someone. **

As you know, Monique, I had a lumpectomy, but I also had the option of single or double mastectomy. I chose lumpectomy for a variety of reasons, the largest one being that I was told the type of surgery I chose would not change my overall survival rate; that my survival depended on whether a metastasis developed, and that would have occurred long before I found a lump. I also liked the fact that if after a lumpectomy something DID show up, I could then move on to mastectomy. I know your situation (with inflammatory BC) is different, but here's my point:

The only time I doubted my decision was shortly after my course of treatment ended, a spot was seen on my other breast and I was told it "looked like a new cancer" and I had to go through the whole rigamarole of biopsy and scheduled surgery, etc. I went through a period of complete devastation for about 6 weeks while I was waiting for scheduling and such. This was the one time I thought for sure this disease was going to do me in, because I'd just blasted it with the "gold standard" of BC care, yet this "new cancer" would have had to have had resisited everything. It was only then that I thought to myself, "what a fool I was to have not taken them both off when I had the chance". It turned out not to be a new cancer, thankfully, but afterward I considered still doing a double mastectomy at that point to avoid this situation in the future. My doctors left it up to me, and assured me it would be covered by insurance if I chose to go that route (since I had a further "problem" it would be covered ). But ultimately, in consultation with all three of my docs - oncologist, radiation oncologist and surgeon - all deemed it unnecessary surgery; that I would be very closely followed with four sets of eyes (primary doc, too) and have MRIs alternating with mamms, something every six months, so if anything were to show up it would be caught very early, etc. I was less concerned with cosmetics at that point, mainly just the cancer although it certainly is a real consideration as snappy has pointed out.

I vividly remember one day, when considering doing bliat mastects, saying to one of my docs that I'd decided I wanted to do this "because my kids need their mother" (of course by that time I'd learned a whole lot more about BC than I knew at the time of the original surgery too, not to mention having my hopes for a healthy future completely blown out of the water with that awful scare). The look on her face was one of real concern when she sat down and gently explained to me again that it wasn't as much the local recurrance that I had to worry about, but a mets, so that taking off both my breasts at that point would not really accomplish much (other than perhaps giving me a bit of peace of mind, the benefits of which are not to be underestimated), especially when you balance that with how closely I'm (and you're) going to be followed. (My question to them was, well couldn't a new local recurrence cause a mets in and of itself? The answer seems to be yes, however they feel they would catch anything before it had a chance to get to that point : ).

How do I feel today about it? I don't know. I guess right now I'm good because all seems to be well (knock on wood). I can say for sure that is not how I felt when they found the other spot. I don't know if this helps you at all, it truly is a difficult decision. I remember at one point one of my docs said if I did have bilat mastects "at least you wouldn't need mammograms anymore" but as laurabelle pointed out a few pages back, now they are doing mamms even on mastectomy and reconstructed breasts so even that isn't true anymore.

Bottom line is, it's a personal decision which only you can make based on how you feel now and how you think you may feel in the future. Will you have regrets if you don't do bilats? You know you have to have one mastectomy so maybe it might seem "easier" to have two, then you won't have to worry as much about the long term breast issues, or deal with the compllications of having only one. What have your doctors told you as far as whether it will improve your overall outcome (in the case of inflammatory BC)? Hugs to you. Let us know how you're doing when you can.

P.S. It was great to meet you!

 

[MerryPoppins]

I had DCIS in more than one spot in my left breast. I opted for mastectomy because they couldn't be sure they were getting it all and I didn't want to wait and see if I'd develope metastasis. By having a mastectomy I also bypassed the radiation and just have to take Tamoxifen.

I also had a reduction of my right breast at the same time, because I was quite large. I almost wish I'd had a double now. I reversed my reconstruction, so if I'd had a double I could go around without a bra when I wanted to without being lopsided.

If you want to know anything else about my experience send me a PM. I'd be glad to tell you about my journey. Unfortunately, everyone's situation is so different. I can't say my choices would be the right ones for you.

 

[WeluvDisney2]

Thank you Snappy, Pea-n-me, and Merry Poppins. I appreciate you all taking the time to respond to my post. It does help to hear what others have chosen and what their reasons were. Hopefully, I will have a tag that says "Survivor" sometime soon as well. My surgery is scheduled for Feb. 27. Please keep me in your prayers. Thanks so much, Monique

 

[2vets]

Hello, all - Pea 'n Me found me posting elsewhere and invited me over. I'll admit that I'm intermittent, tend to come here when I have a Disney or Univ trip in the works.

I'm 36, a 3-year survivor of invasive carcinoma. I was stage 1, but grade 3. Had a lumpectomy and 4 rounds of AC, this was when Taxol was still in trials, so I didn't have it. My tumor was negative for estrogen receptors, so I'm not getting anything else (like Tamoxifen).

Weluvdisney 2 - I was in the middle of deciding on radiation, and I kept thinking...what if I put my hand on my other breast someday and find a new tumor? Because I was premenopausal, I was told that I had a higher likelihood of developing a new tumor in the other breast than the rest of the population. I thought about doing it all (chemo) again, and I knew I had to have a bilateral mastectomy - because I was stage 1, I could have a mastectomy instead of radiation. I did have bilateral reconstruction - expanders, then saline implants (they are a bit uncomfortable, but much better than the expanders). And - on the shallow side - my chest looks great, even in a bikini.

I should say that this was my decision, and it was my own gut instinct based on my own diagnosis and prognosis. I knew that if I had a new dx in the other breast, I would always feel terrible regret about not doing a bilateral mastectomy...and frankly, I was not terribly attached to my breasts before (though I'll admit I cried like a baby when going in for surgery, as I wasn't sure what I'd come out with). I can deduce a bit from below - looks like you have inflammatory carcinoma? What does your dr recommend? Have you had another opinion if you don't like the initial recommendation?

I will be thinking of you on Feb 27. I have a whole "chemo/cancer" thing that I wrote for a friend at work, and I'd be happy to email it to you, if you think you'd like to see it. hugs.

ps - thanks laurabelle for the signature info!

 

[snappy]

Glad to see you here, 2vets. Welcome!!

 

[MNSusan]

I can't be much help, Monique, as I had lumpectomy only. No radiation, just tamoxifen. But I wanted to say hi! and let you know you're in my prayers.

These ladies have given you great advice! Have you been to breastcancer.org? There's an active support community there, too.

Good luck to you.

GAGWTA!!

 

[NHAnn]

uuugh...typed out a long post and hit something wrong and it's gone!

Linda...I LOVE your posts...I always find something that makes me think, or reassures me, or teaches me something...even when they are "scarey" they are so calming . Does that make sense They're never irrelevant!

Monique...the decsion process is so hard. I had DCIS and opted for lumpectomy an radiation instead of mast so I never went down t he single vs. double path. I think laurabelle had bilateral masts, I wish I could find some of her earlier psots on this thread about her decision process..I think she shared a lot of that with some of us who came on in the midsts of ours.
Try not to overload on info...it can be carey and counterproductive if you get overwhelmed, get enough to make a decision that's comfortable for you. I'll be praying for strength and clarity for you.

Hello 2vets welcome!

GAGWTA!!

 

[laurabelle]

~~~***GAGWTA sistas***~~~

A little update on me... I had my Remicade infusion yesterday, which was uneventful, except that it took 4 people and 6 sticks to get the I.V. in, my veins are shot to hell! I seemed to have developed a UTI on top of everything else, so I got to do a urine test while I was there and I'm on another antibiotic. I keep running low fevers, maybe this is the culprit... So I'm waiting to see if the Remicade worked. I slept better (finally!) last night, thanks to the Benedryl pre-med.

While I was waiting (I go to the cancer center for infusions) there were 2 men touring the center. One a hospital guy and the other a patron. The patron was a sweet, older man who had lost his wife to cancer and was making a donation. He mentioned that she went back to school after her dx and earned 2 degrees, he was so proud of her. He had just donated $100,000 to the college (Goucher) she attended. *sigh*

I'm still having some pain, and hopefully when my other issues are under control I can get up and about more and work out the kinks. Danny is going back to work Mon. I thank God that he has the time to take off to take care of me and the girls, I'm so blessed to have him for a hubby. I need to brainstorm something really special to do to thank him...

Hopefully I can do a little catching up soon...

 

[snappy]

Laura, I am glad you felt up to posting as I sure was wondering how you were doing. I hope getting the UTI under control will make you feel better. Having fever is the pits.

You sound like you have a sweetie in Danny. I think you getting better and stronger will be the best reward he can receive for all he has done for you and your daughters.

Please keep us informed. When is your next infusion?

Such a sweet story about the patron who donated all the $$$ whose wife accomplished so much after diagnosis. Thanks for posting it. It is uplifting to hear about someone like that.

 

[NHAnn]

Your DH does sound like a gem Laura
I too have been thinking of you and hoping things are improving for you ...I bet once that UTI is knocked out you will be well on the road

GAGWTA!!!!!!!!

 

[Pea-n-Me]

I lost a reply earlier.

GAGWTA! I have been sick today, praying to the porcelain gods, LOL. This bug has gone all around my children's school, everyone's had it - both kids and parents. Uuggh, this time of year stinks.

Laura, Beth, Monique, want you to know you've been in my prayers and hope things are going better.

2vets, glad you found your way over. If you can, repost your WDW story, the girls here will love it. My tumor was also ER/PR neg and grade 3. Glad to hear you are doing well.

 

[NHAnn]

Oh do tell us your WDW story, we love stories

Linda...hope the bug is gone soon...yuck...

how's everyone's weather today? We got about 5 inches of wet heavy snow today ...started during the morning commute and is tapering off now....
I'm ready for winter to be over.....

GAGWTA!!!!

 

[snappy]

Foggy, overcast, 48 degrees right now at 5:42 am.

But it will be beautiful later, sunny, mid sixties during the afternoon.

No snow, no kidding, here.

Hope everyone has a great day.

 

[laurabelle]

~~~***GAGWTA sistas***~~~

Forecast is partly cloudy and 52 degrees here...winter, what winter?

2vets

Monique- I had both breasts removed. I did alot of praying, reading and soul searching to come to my decision. My tumor was tiny (.08cm) but aggressive, in 2 lymph nodes. It had DCIS, LCIS, lobular and ductal invasive. There is some thinking (it's debatable) that lobular cancers can appear "mirror image" in the opposite breast, I worried more that at my age I had alot more years ahead of me for it to come back and I wanted to do eveything I could to make myself feel like a survivor, like I was going to make it. Symmetry was another reason to take both, though I've seen some nice one sided work. You can always change your mind and have both removed, but you can't put 'em back. I do have many women who only had one side done come up to me scared, saying they wished they had gone ahead and done both, because they fret over the other side so...I just tell them it's their body and if they want to have the other side removed, they should go for it. It's a tough decision to make, in retrospect, I hate that I had to make it, but I'm content with the choice I made... I hope it helps.

I get a teeny bit better each day and the Remicade seems to be working on the colitis (though I'm afraid to speak too soon...)
I'll take tylenol when it gets bad and I want to sleep...yeah, tylenol makes me sleep, but the big time narcotics can't control my pain, go figure! Mostly, I have pain when I stand up, it's not bad when I sit or lie down. Bad pelvic cramps and backache. Driving doesn't bother me, so getting the kids to school isn't a problem, I just can't seem to do much else yet.

I'd love to go shopping. My trip to Denver is a month away so I have something fun to look forward to, visiting my in-laws for a couple of days then spending the weekend with a bunch of my sistas!

One thing I have managed to accomplish while convelescing, is I got a new credit card to transfer my Disney Visa balance to to get it paid off. It's a real monkey on my back and I got a much better deal on the interest rate with Am. Express. It will make it easier to reach my goal of paying it off!

Hey, I love all the new smilies!
I hope you all have a beautiful day!

 

[MNSusan]

36 degrees, sunny and windy here. This is just not what winter in Minnesota is usually like. Very weird.

GAGWTA!!! You're in my prayers.

DH's cousin called the other day (they live 3 blocks from us). She has ovarian cancer and has been in remission for over 2 years. A recent PET scan shows 2 new metastases in her cecum, and she started chemo for the third time on Friday. I am so so grateful that I'm where I am - I cannot imagine us both going through chemo at the same time.

The oncologist's office called yesterday. They had taken a bunch of blood when I was in to see how close to menopause I am. To be officially in menopause, the estridol level should be lower than 18. I'm at 22, so Tamoxifen is still my drug of choice.

We're off to WDW on Thursday to ride Expedition Everest! Woohoo!

 

[Pea-n-Me]

34 degrees but here. I am feeling a bit better.

Laura, glad you're feeling better. Happy the remicaide seems to be working and hope your pain continues to improve. LOL, never underestimate the powers of tylenol.


Well, hate to rub it in but I am starting to pack for our 3 nights at WDW followed by 7 nights on Disney Magic next month! Considering we booked this back in Sept of 04, it's hard to believe it's almost here! A little tricky packing, having to bring suits, dresses, shoes (I hate real shoes), jewelry, make up pirate outfits, and such, but eventually I'll get it all (so much easier to pack for just WDW). Traveling with good friends from home and meeting up with a nice group of Dis-ers, one of whom will be hosting a meet in the Walt Disney Suite on the Magic! DS8 has his best friend with us, but DD8 has been pen-palling with another Dis-daughter so she's excited to meet some new friends onboard. This year they will be going into the Oceaneer's Lab so they're feeling pretty We already booked 2007 with 5 families from home (and unbelievably we all got Secret Porthole Rooms ) so I'll have that to look forward to when this is over. Trip planning is such good therapy!

ETA: Susan, have a great trip!

 

[NHAnn]

Laura...keep feeling better, a day at a time

Linda...I agree, trip planning and packing is great thereapy. Even vicariously. through someone else, I like it..so don't hold back on my account

Susan...looking forward to your report on EE!!

More snow expected here tomorrow .........

 

[goofyshell]

Hi! I didn't read this whole thread, but felt like this was the place to come.
My mom called today. She was diagnosed with breast cancer and is having a double masectomy on Monday. I am flying home for the surgery. I'm so scared. I don't want to lose her. Also, she says the tumor is big enough that she will also have chemo. I hate to think of her suffering. I know all of you have inspiring stories, I guess I need a little inspiration and hope right now.

 

[MerryPoppins]

Goofyshell, I'm sure you are scared. A breast cancer diagnosis is initially very frightening. Let me assure you that many of us have been survivors for several years and we're going strong.

Encourage your mother to get copies of all her pathology reports, etc. It's good to have them on hand so you can remember everything they tell you. The information flies fast and furious sometimes. Also it's good to write down questions so you can remember to ask the doctor.

It's important to stay positive. A cancer diagnosis is not a death sentence. Just look at what your mom has to do to get well and take it a day at a time. Sometimes I think this is harder for the family and friends than it is for the person fighting the battle. It's a helpless feeling. If you have any questions, feel free to ask here. We'd love to be your support group. Even if you just need a place to vent or a shoulder to lean on.