Dis Breast Cancer Survivors - GAGWTA!

[WeluvDisney2]

Monique, so sorry to hear about your plight. I too live in MA. What hospital are you going to? I am newly diagonosed, 2 1/2 weeks. Still going thru tests, I think I am more nervous about the tests and the results. I am going to the Faulkner Breast Clinic in W. Roxbury. They are supposed to be one of the best in the country.
Haven't posted since last week, but have been reading and will let you know what's going on.
Ann, I too give my congratulations on your 7th Grandchild. We have 7 too. Ages 13 down to the last 3 are 7 1/2. They are wonderful. 3 girls, 4 boys.
Donna

Hi Donna. I may be having my treatment at Faulkner through Dana Farber. It is scary when you do not know what to expect. PM me anytime if you want to talk. ~Monique

 

[snappy]

Thank you Snappy. If you know Disney Debbie would you ask her if she would like to PM me? It is wonderful to have others to lean on and ask questions to. It is scary not knowing what to expect. ~Monique

Monique, I was pretty sure it was Disney Debbie, I just found her first post on our thread, it is #348 on page 24. Took me a little while to find it but I am kind of a determined person. Check out her post

Anyway, Monique I don't really know her other than posting here. But it couldn't hurt to send her a pm. she might be able to answer specific questions for you that would be very helpful.

I have sought help this way on reconstruction with several disers. REally helpful.

 

[donnabres]

Monique, I'm not too computer literate, not too sure how to send an im, should ask the grandkids. I did email you though. That much I can handle.

 

[laurabelle]

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

Donna- None of us really know what to expect out of treatment because we all react differently to it. Some people breeze through it, some don't. There are some great anti-nausea drugs out there now, even better ones than when I had chemo, so if you do get sick, chances are really good that these drugs will take care of that.

One of the onc nurses told me two things that I'll never forget when I was starting: There are no stupid questions. Nobody comes into this knowing much, but you'll get quite an education! Call with any questions, don't be shy, or think it's not important.
Listen to your body! When it tells you to rest... rest. That was probably the hardest mentally, but I learned that when your body is at rest is when alot of healing goes on...and besides, there are times when you just can't argue with a good nap!

You can send someone on the boards a PM (private message) by clicking on their screen name and following the links...

Christine- I think it's awful for you having these questions hanging over you year after year. I never had any biopsies before cancer, so I don't know what the typical follow up is. I do know that sometimes people are just told to wait and watch it, which would drive me crazy! I'm sorry but I can't remember if you have a family history of breast cancer...I have bc friends who have strong histories of it, and went through genetic testing and found they carry the mutations. Some of the women in the families who have NOT been dxed with bc had prophylatic mastectomies and some also had oopherectomies (depending on the mutation, one carries high risk for bc and ovarian cancer). It sounds radical, and it's an incredibly tough decision to have to make, but in their situations, it is warranted. Like I said, I don't know if you fall into this category, but I have a friend with a wonderful site I've posted here before, all about genetic testing. F.O.R.C.E.

Ann- You have a very wise hubby! When I was going through treatment, I read carefully and tried not to go beyond my own dx. Even now, I try to stay informed without going too far... I know how easy it is to let your imagination run wild! I'm living with my cancer dx and trying not to let it rob me of anymore than it already has, including focusing on the fear rather than the fact that I'm still here!

Linda- I used alot of meditative prayer and visualization during treatment, it was extremely helpful not only to relax, but to bring peace, to see that what I was doing was actually bringing health and healing when there were times it seemed like it's doing the opposite! One I did had you seeing yourself in the future...healed!

I have never heard that about staging mets...I have always heard it is part of the original cancer, like he said, but once it moves beyond the breast region (not local recurrance or a new primary) to be distant mets, it's stage IV... at least everyone I know who has been in that situation was told this.
I think it's funny that he used the finger as an analogy because yesterday I had lunch with 2 friends who just finished chemo a couple of months ago and they are really having a hard time with depression and fears of recurrance and I told them how much time helps, and we all fear it, but you come to realize that every little ache and pain isn't cancer...bc mets doesn't show up in your big toe!

 

[Pea-n-Me]

GAGWTA!

Laura, I agree. I had never heard it that way before, either, but I think he was trying to present it in kind of an "oncologist speak" fashion when he was talking to me on a medical level (as opposed to a patient level if that makes sense). We did agree that in actuality the semantics didn't really matter one way or the other, but in a strange way it scared me and made me feel better all at the same time, LOL. (I even considered the possibiltity he was a kook but he wasn't).

I also ran into a nurse I've worked with who is now a BC NP at a *very fine institution* here in Boston. It'll be nice to know I can ask her questions or bounce things off her if I/we need to.

Funny you should mention the "seeing yourself in the future" meditation. I'd forgotten I'd kept them but yesterday as I was cleaning DDs room she pulled out the posters I'd done with my group called "Life Mapping". One week we spent the class making posters with "where we've been" artwork using beads, stickers, crayons, etc... The next week we did "where we're going" posters. I"m not artsy at all but they did come out pretty good and it was nice to see in print my dreams for the future right along with where I've actually been. Things like this really do help you get a handle on anxiety when you're in treatment and afterward. For those of you who are newly diagnosed, try to find a support network or center where you can use complementary therapies like this. They really do help and you meet others who make you feel you're not alone in this.

One last thing. Yesterday DH told me about a show called "I have BC" on the Discovery Health channel (we could watch it anytime, I forget what that's called, digital cable, so I'm not sure when it's actually on). Anyway, I wasn't sure if I should watch it but I decided to try it while I was cleaning. I really enjoyed it, especially the end (but I won't spoil it). It was about a woman whose mother had died of cancer who was herself dx'd in her early 30's. It explored her journey and the doctors explained a lot. If anyone has a chance to see it it's really good. I will ask DH if there's anyway to tape it so if anyone wants it I could mail it but I'm not sure we can.

Have a good day everyone!!

 

[Christine]

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


Christine- I think it's awful for you having these questions hanging over you year after year. I never had any biopsies before cancer, so I don't know what the typical follow up is. I do know that sometimes people are just told to wait and watch it, which would drive me crazy! I'm sorry but I can't remember if you have a family history of breast cancer...I have bc friends who have strong histories of it, and went through genetic testing and found they carry the mutations. Some of the women in the families who have NOT been dxed with bc had prophylatic mastectomies and some also had oopherectomies (depending on the mutation, one carries high risk for bc and ovarian cancer). It sounds radical, and it's an incredibly tough decision to have to make, but in their situations, it is warranted. Like I said, I don't know if you fall into this category, but I have a friend with a wonderful site I've posted here before, all about genetic testing. F.O.R.C.E.

laurabelle: No I do not have a family history of breast cancer. Well, my maternal great aunt and her daughter actually both had breast cancer when they were much older--my great aunt was in her 80s and her daughter was in her 70s. I don't know if that counts.

But, as far as my breast history, I have a "history" of fibroadenomas. That's it. One at 14 and also a fluid cyst next to it, one at 23, and one at 40 (last year). Now I've apparently got another "mass" in the same spot as my surgeries when I was 14 and 23 (obviously this is recurrent) and then this "mass thing" in my surgery bed from the biopsy last year.

Honestly, I am not expecting it to be cancer. The small "sane" part of my mind that is still left is telling me that it is recurrent fibroadenoma since it is in the same places and possibly mixed with scar tissue which is complicating the sonogram. My "insane" part that is now encompassing 3/4ths of my mind, is going wild with the fact that I have cancer all over me. Or that something from last year's surgery *caused* cancer. Foolish thinking, I know. But, I see the surgeon tomorrow morning. My GYN's office will not read me the report. I would go to the radiology place myself and get it; however, it is about an hour away from me. I guess I'll just have to handle the suspense for another 27 hours.

 

[Christine]

Okay, I just talked to my GYN office again and got some better feedback on my ultrasound report. I'm hoping some of you can chime in and tell me what you think (although I *know* you're not doctors!!).

The first mass noted is on the right breast in the surgery bed. It is called a "cystic mass with some soft tissue" matter. This is where I had my surgery last year.

In the left breast there is a totally solid mass that is .5 cm.

Both are suspicious for neoplasm but especially the one if the left breast (where my surgery was done 20-something years ago).

So, I ask the nurse that aren't solid masses quite characteristic of fibroadenomas (as I swear that's is how the radiology place described my fibroadenoma last year)? She said "Well, if it looked like a fibroadenoma, they would say that or say that it looked benign."

Okay, well I think that kind of made me feel worse. It looks like they are more concerned about my left breast (where I can't feel anything) than my right breast that has the huge lump.

Any experience on how these ultrasound reports can "sound?"

 

[Pea-n-Me]

I'll take a stab at it. Look here: http://www.breastcancer.org/testing_ultrasound.html

They can tell on US whether a lump is fluid or solid for the most part, although it's not an exact science. (I've quizzed my radiologists multiple times in my own situations, LOL). "Suspicious for neoplasm" is a category: i.e. either it is, or it isn't. It also warrants further work up. In cardiology everyone that comes in, for instance, with chest pain gets a "rule out MI (heart attack)" diagnosis even if there's a low suspicion. We go ahead and do the tests needed for that diagnosis on everyone. The majority do not have a heart attack but we know for sure one way or the other with the work up.

My first biopsy was for a fibroadenoma. We knew it was solid and because it was shaped like a perfect jelly bean, the radiologist's report recommended watching and repeating mamm and US in 6 months. I saw a surgeon about it myself and chose to biopsy it and we found out what it was. They were right and I was relieved. Never regretted biopsying it. Still there, in fact, and my surgeon and oncologist had a big discussion about whether it should come out (not surprisingly, surgeon wanted it out and oncologist felt it not necessary ).

So yes, solid masses may be characteristic of a fibroadenoma based on their shape or not. However, a malignant mass is more likely to have an "ugly" or unusual shape. When I found my lump I wasn't too concerned originally because of my experience with the fibroadenoma several years before. During the US of my BC lump I happened to look up on the screen and I got that sinking feeling in my stomach when I saw the shape of it. Definitely not the jelly bean I was expecting. I refer to is as a "black blob". Not nice. I also knew there was something very wrong by the non-verbal behavior of the radiology staff compared to the time of the fibroadenoma situation. I saw it in their eyes.

HTH and that it wasn't TMI. Tomorrow when you see your surgeon he or she will show you the films and explain the rationale for their recommendations. Remember, not all "suspicious" solid lumps turn out to be cancerous. I believe it's 80% of those that fall in the suspicious category are benign. Hold onto that thought and good luck tomorrow.

 

[Christine]

So yes, solid masses may be characteristic of a fibroadenoma based on their shape or not. However, a malignant mass is more likely to have an "ugly" or unusual shape. When I found my lump I wasn't too concerned originally because of my experience with the fibroadenoma several years before. During the US of my BC lump I happened to look up on the screen and I got that sinking feeling in my stomach when I saw the shape of it. Definitely not the jelly bean I was expecting. I refer to is as a "black blob".

HTH and that it wasn't TMI. Tomorrow when you see your surgeon he or she will show you the films and explain the rationale for their recommendations. Remember, not all "suspicious" solid lumps turn out to be cancerous. I believe it's 80% of those that fall in the suspicious category are benign. Hold onto that thought and good luck tomorrow.

Thanks Linda! Well, I remember being in the ultrasound room and looking at my "new" lump. The one they are calling the solid mass. I thought to myself: no big deal, this looks just like the one I had last year (the fibroadenoma) but smaller. It seems very well defined and round. Of course, when I look at it now on the films there is "shadowing" so it's not so round but I do remember my first impression when I saw it. But I also remember the spastic radiologist. Unfortunately, I have nothing to compare her to. I went to another facility last yaer and the radiologist was very calm, matter-of-fact, and didn't get me whizzed out when he told me about my solid mass that was probably a fibroadenoma but should be biopsied.

It will be a real miracle if I make it until tomorrow.

 

[Pea-n-Me]

Just out of curiosity for those of you with DCIS - any idea what your tumors looked like on US or mamm? Were they defined in shape or were they also "ugly"? I was just wondering if those somehow look different from an invasive tumor.

 

[snappy]

My impression was that you really cannot see DCIS. What the radiologist saw in my case was a pattern, size and shape of calcifications. Many women have calcifications as they age, how they appear is the issue.
I had trouble seeing it on the films, but they look like white flecks. Apparently the calcifications can signal there is DCIS, but is not actually DCIS.
I am wondering if the digitial mammography now available at the center I go to for mammograms will be more effective at finding these earlier.

If the calcifications are clustered together, small in size and very irregular in shape (varied shapes, not homogeneous, jagged edges), it is more suspicious.
On the mammogram report, there was a rating, a BIRAD rating, on a 1-5 rating system. Mine rating was a 4 as was my sister's, 4 is for suspicious, biopsy recommended. Mine was cancer, hers was not.

Even with a 4 rating, apparently most are benign, around 80% was what I was told. I bet there is a different % if you have a 5 BIRAD rating.
With a 3, you may opt to wait and see, or go ahead with a biopsy to just be sure.

I did get a feeling from the doctor and the nurses when I had the stereotactic needle biopsy that I most likely had cancer. The doc said something like we did today what we were trying to do (get the samples of the two areas). The nurses were very very caring and comforting both before, during, and after the biopsy. Maybe I was just so worried I was reading stuff into their words and attitude. I got the results the next day so at least there was not a lengthy wait like I had several weeks later for the results from a needle aspiration on the other breast. That took almost a full week. Again I was convinced I had the blasted stuff in both breasts, however, the right side the doc could actually feel (it was my second opinion doc) something way down by the chest wall. I let her do the aspiration, the first doc had not felt it and did not later. I couldn't feel it either. there really is something to knowing how your own breasts feel so you can notice changes.

 

[MerryPoppins]

I had DCIS, too. I was a rating of 5. I didn't have an ultrasound, just a mammogram and needle core biopsy. They showed me the calcifications. I'd say they were irregular, but small and in several places. No one could feel them.

Welcome to our newest members. As others have said, I'm sorry you had to join us, but we're glad you are here. Feel free to share how you are feeling. We've all been there. It's not fun, but in my case it got much better. The early days are the worst because it's such a shock. Try to stay positive and believe that you can win this battle. We're here for you.

My life remains hectic. I'll be so glad on Saturday night when the school musical is over! The play begins Wednesday afternoon. My DD is so excited.

GAGWTA!

 

[WeluvDisney2]

Snappy, thank you so much for looking that up for me. I sent Debbie an email. ~Monique

Monique, I was pretty sure it was Disney Debbie, I just found her first post on our thread, it is #348 on page 24. Took me a little while to find it but I am kind of a determined person. Check out her post

Anyway, Monique I don't really know her other than posting here. But it couldn't hurt to send her a pm. she might be able to answer specific questions for you that would be very helpful.

I have sought help this way on reconstruction with several disers. REally helpful.

 

[snappy]

You are very welcome, Monique.

I hope you two can get together soon.

 

[NHAnn]

My impression was that you really cannot see DCIS. What the radiologist saw in my case was a pattern, size and shape of calcifications. Many women have calcifications as they age, how they appear is the issue. I had trouble seeing it on the films, but they look like white flecks. Apparently the calcifications can signal there is DCIS, but is not actually DCIS.

That's my understanding too. I could see the cluster of white speckles very clearly on the magnified view mammo that the radiologist showed me, when she told me that I would need an excisional biopsy of the area.

GAGWTA!!

 

[laurabelle]

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

I have my mamm. from when I was dxed. I had to take it to my onc and on the advice of my nurse sister, I kept it. Yes, we're a bad gurls!
I wonder if I can scan it to my computer without messing it up? My tumor had LCIS, DCIS, Lobular and Ductal Invasive and you could see what it looked like...

 

[Christine]

Well, it's off to the surgeon for me today. In another 5 hours I should be in "the room" determining my fate.

Honestly though, today, I doubt I'll know much more than I did yesterday. I guess it will be just interesting to hear the surgeon's "take" on the reports. Is he alarmed or not? How fast will they be trying to whisk me off for a biopsy? That's what I'm going to be trying to figure out.

 

[Pea-n-Me]

Good luck today, Christine.

 

[donnabres]

Good luck Christine, my thoughts and prayers will be with you.
Donna

 

[Christine]

Thanks all. I'm definitely not holding up well today. Went off into some big crying jag while I was ironing my shirt. And I continue to feel on the verge of crying. I'm sure it isn't helping that I was *supposed* to get my period yesterday and haven't. I've probably stressed myself right into a late period. I was hoping it would have started so that my breasts would be a bit more deflated when the surgeon exams me, but no such luck!

Anyway, my mom will be coming here to pick me up soon. The doctor's office is about a 45 minute drive from me, plus it is the tail end of rush hour here. I will be popping my Xanax before I leave.