Dis Breast Cancer Survivors - GAGWTA!

[Pea-n-Me]

Welcome, denisem. A good friend of mine runs a support group for women who's tumors were larger than 3cm, they are on a clinical trial (hers was 7cm BTW). I've gotten to know them because they invite me along to their dinners and such (even though I am technically not in that >3cm club). Most of them had chemo first to shrink their tumors if they opted for lumpectomy; I think most of them had invasive tumors but one I know for sure had DCIS and had a mastectomy because, like snappy, hers was in several areas of the breast (and I don't believe she did radiation first). I will ask my friend about this for you.

Anyway, I suppose if you have DCIS and chemo is not needed, they'd attempt the same thing with radiation. It helps to be large chested here - where the tumor is large and they have to get clean margins, sometimes a large portion of the breast has to be removed so cosmetically it is easier if you're large chested. One of the ladies in this group mentioned above had two lumpectomies without clean margins and was so small chested she opted for mastectomy w/ immediate reconstruction in order to be sure they were getting it all. She is open to talking to others so if you want to email her let me know.

Surgeon explained the options of lumpectomy vs. mastectomy & has suggested I make appts. with an oncologist (for lumpectomy) and plastic surgeon (to learn more of what's entailed should I decide to have mastectomy/reconstructive surgery simultaneously.)

I am wondering if you are seeing a surgeon who specializes in matters of the breast, i.e. a Breast Surgeon (an oncologist doesn't do surgery). If not, I would suggest you find one and get an opinion from him or her. Mastectomy with immediate reconstruction was one of the things I'd considered. The plan for that was for my Breast Surgeon to remove all of the tumor, then step aside and let the Plastic Surgeon go to work on reconstruction. I did not opt for that ultimately, had a lumpectomy, but chose a Breast Surgeon over my General Surgeon who I'd known beforehand (and was the head of surgery for my medical group). To me it was very important to have a Breast Surgeon.

One other note about the nodes. I don't know how it routinely works with DCIS (I'm sure the other ladies here with DCIS will chime in) but the only way they really know if your nodes are negative is to remove them and have them studied by a pathologist. With some cases of DCIS they may not, but with a tumor as large as 4cm they may recommend removing some and testing them (since DCIS by nature can turn into invasive cancer in later stages). With a core biopsy they can only sample small areas of the tumor. Once they remove the whole tumor it is studied in depth. It is not inconceivable they could find some areas of invasive cancer which were not found on the core biopsy, but hopefully that won't be the case for you. DCIS with surgery and radiation has an excellent prognosis which is great. I hope this doesn't scare you but I wanted to help you understand so you can know what questions to ask, decide what surgery is right for you and not have any surprises later on (that's the nurse in me ).

 

[snappy]

Pea-n-me is right and she said it so well. The only way to make sure the lymph nodes are clear is to have anxillary sample dissection, even if it is the sentinel node type of anxillary surgery. The core biopsy is also a sampling type procedure and can miss areas. My pathology report after mastectomy found another 2-3 cm area of DCIS not identified in the biopsy, but could not find any more invasive tumor (the biopsy had found a very small, .1 cm area of invasion). I think in my case this actually meant I had 3 areas of DCIS, at least two of which were in different quadrants. I had 16 clean nodes though so I feel truly blessed. In my case there was no decision to make, since I had that very small area of invasion as shown in the core biopsy, I needed a lymph node dissection. The lymph node results is a very crucial element of staging your cancer and planning treatment.

As you begin your next round of doctor visits, it is advisable to bring copies of ALL your pathology reports and other tests (scans, chest xrays, etc) to your visits. I agree that a seeking out a breast surgeon is your best option. At the least, find a surgeon who does breast surgeon as a large part of his practice. My surgeon is a general surgeon but is also an oncology specialist, chief of staff at a major local hospital and a professor. He is very "up" on cancers of all types. However, I also saw a female breast cancer specialist for a second opinion, and I would advise you to get a second opinion before proceeding as well. She basically gave me the same advise re: the standard of care in my case was a mastectomy due to multiple areas of DCIS. My feeling was that my first doc, the oncology specialist was much more experienced and I went with him for the surgery, even though he was not specifically a breast surgeon. He is also following me post op. I was still glad I went for the other opinion though. The female breast surgeon was too new in the field for my tastes, although she was good (her more experienced partner was ill and out of commission at the time).

Hope this is not too much information for you but as you are finding, info is power with BC.

 

[MerryPoppins]

Hi. Sorry I've been MIA lately. I'm still reading each day, but real life just keeps getting in the way of me finding time to post. Still, you've all been in my thoughts and prayers.

Denise, I'm another DCIS lady. I consulted with a breast surgeon and got a second opinion. I opted for mastectomy and reduction of my other breast. They started reconstruction at the time of my surgery, but I later reversed it. It just wasn't for me. I had to go in every week for an injection to increase the size of my extender. Finally, they decided that the extender was leaking and I'd have to have surgery to replace it and start over. I'd still have to go back again to have the extender removed and the implant put in. I asked if my implant would spring a leak, and they said probably at some point. They usually have to be replaced if you are fairly young when you get them. At that point, I was getting used to my new self. I decided I didn't want to keep having surgeries. I just wanted to get on with my life. So I have a prosthesis named Betty Boop (only with a b at the end). See, I have a sense of humor, too. It really helps a lot. You're going to do just fine. I had a sentinal node biopsy. The node they tested was clear and I had clear margins. I didn't have to have chemo or radiation (but I would have had radiation if I did a lumpectomy). I'd be glad to answer any questions you have. I recommend Susan Love's Breast Book. It's very informative. I read a lot when I was diagnosed. It helped me form questions (which I wrote down to take to the doctor's office). And do ask for copies of all your reports. I keep mine in a file at home.

 

[snappy]

I am thinking of possibly just having a reduction on my remaining one and foregoing the reconstruction part. I have an appointment with a plastic surgeon on Monday. We'll see. I am definitely not interested in implants.

 

[Pea-n-Me]

Wow, Laurie, I'd forgotten you'd had that many nodes removed. You'll love this: I've suspected all along my bout with lymphedema last spring was as a result of flying in January. So I remembered to wear my sleeve on the trip down last week - but completely forgot it on the trip home. I can feel that heaviness/discomfort in my arm a bit now, hopefully it doesn't swell, I don't feel like going to PT again.

I was so good remembering minute details this trip but I wasn't too good at the more obvious ones. Besides the sleeve, forgot to fill the car rental with gas so we were late for our flight home (the plane was loaded and they were paging us as we arrived at the gate, LOL). Forgot all my memory cards for my camera. And DH forgot the cord for the laptop! Luckily the Dolphin staff lent us a cord for the laptop but I guess when we were in battery mode I lost a whole folder of pictures from the kids bday party as well as them opening their surprise poems and the first night of our trip and can't get them back. Oh well, I guess there are worse things in life, right?

 

[snappy]

For what it's worth, Linda, both my doc and the ladies in my support group
suggest holding the affected arm about your arm and squeezing your fist 20 times. Do this several times a day.

I have not actually experienced lymphedema but I have not been on a plane since my surgery. My upper arm and under my arm does feel a little full and of course numb, so therefore just a little uncomfortable. But this appears to be my new normal, it does not get any worse. I don't wear tight jewelry, carry anything heavy with my left arm, and I watch for cuts, burns, bug bites religiously. I saw a physical therapist a month or so after my surgery for a one on one lymphedema clinic, and she measured my arms. Even back then the difference in the circumference of my upper arms was less than half an inch.

I also think I am completely out of the grass cutting business since the fun and games with my back (my left arm was not impacted since I only used my right hand to steer the mower). Ah, the things we sacrifice in the name of breast cancer.

 

[denisem]

I hope this doesn't scare you but I wanted to help you understand so you can know what questions to ask, decide what surgery is right for you and not have any surprises later on (that's the nurse in me ).

Not at all - I prefer to know the beast I'm fighting. It's the fear of the unknown that does me in! Nothing was scarier than the days spent between the biopsy and learning the results...

Outside of an outpatient laparoscopic removal of my gall bladder a few years back, I've been disgustingly healthy for 52 years. I'm a total doofus in terms of medical terminology/procedures and protocol, so the Susan Love book sounds like a godsend.

Thanks to all for taking the time to relate your experiences - y'all are the best!

Denise

 

[laurabelle]

~~~***GAGWTA sistas***~~~
We had a great time at WDW and ended up extending our stay thanks to Wilma so we flew home yesterday. Sorry we weren't able to get together Linda!
I got lots more sleep at Disney and I'm hoping it continues!

I had a f/u this morning with the gyn onc and she said my thyroid function that was done about 10 days ago was normal. So there's no clear cut answer as to why my periods are so screwed up. But I def. still have estrogen working. I told her I had been talking to my onc about ooph/hyst. before my hospitalization and I think I am finally going to have it done. I will see the gyn onc again in Dec. and we'll schedule it for Jan.
I have a box in my trunk for spare parts...

Lots of catching up to do but I want to say welcome denisem- Sorry you had to join our club!

 

[NHAnn]

GAGWTA!

Glad your trips went well, L & L...sorry you could not meet up. BTW...I am buying an AP for December (DH and I hope/plan to get in another trip ourselves within a year)....and I now have some credits on SWA due to playing around with dates and internet special fares...so....if anyone is interested in a potential "DIS BReast Cancer Survivor meet at WDW" in 2006...I'm game to consider it

Denise... Another DCIS-er here...went through my biopsy and diagnosis and treatment right here on this thread when it first started last spring! I had a large area of DCIS as well (LOVE your naming "the beast" too BTW) but got clean margins on the lumpectomy...if I hadn't, or if any invasive component had been discovered in the lumpectomy pathology, I was going to go for the mastectomy option. Radiation before surgery was never raised as a possibility to me wither, though as others have said, I've heard if it as an approach to large invasive tumors or in other types of cancers like lung and brain . Lymph node surgery was not suggsted to me either. I'm comfortable with the follow-up with surgeon and onc, am on anti-estrogen therapy...and figure I just go on with life and hope it was the right decision, hope that the pathologist miss anything in the pathology, etc etc. But you can drive yourself nuts second-guessing yourself. SOmeone on here said "You just have to get as much info as your comfortable with and need to make the best decision for yourself, and move on, then deal with what comes later..later!" I figure I'm followed close enough that if it ends up having been the wrong decision...I'll catch it early.
Interesting discussion about tumor size, chest size and cosmetic results of lumpectomy/radiation. Both the surgeon and I are very pleased with my cosmetic results despite the amount of tissue removed and some"shrinkage" due to the radiation. I would characterize myself as "middlesized". I wear a ladies medium shirt. I've been sort of in between B and C cup for years dependiong on the brand/style of bra, but the treatment side is now definitely well within B size and the difference is not noticeable at all unless you're really looking for it
I agree, the waiting, the anxiety and fear, is the worst. I love your sense of humor and it's so important. Add me to the list of those who are both glad to "meet' you but sorry you have to meet us!

Speaking of DCIS/radiation and such...how is Laurajean doing?

 

[laurabelle]

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

Also, anyone experienced with reconstructive surgery at the time of mastectomy?

I'd appreciate any opinions (via PM if you wish) while I wade through all this information!

Thanks a bunch!

Denise < --- if she didn't have a sense of humor, she'd have no sense at all

Denise- My tumor was small but aggressive, .08cm and it had DCIS, LCIS, Ductal and Lobular invasive, 2+ nodes. I was stage II. I had chemo, no rads, bilateral mastectomies with immediate reconstruction using saline tissue expanders later swapped out for silicone. I wasn't a candidate for any of the flap surgeries. One of my favorite websites is www.breastcancer.org tons of info and easy to understand. I've met the doc who does the website, she's wonderful and has a great sense of humor too!

Ann- I want an AP!!! I'm asking for one for Christmas, though then the rest of the family would need one too, I'm not holding my breath! We keep buying 10 day tix and using a few days at a time...hubby can handle that, seeing the total for 4 APs freaks him out! I would love to meet...I don't need an excuse for another Disney trip, Dec. will make 4x this year- I'm hopeless! I told my hubby while we were there, I felt so happy and chilled out and just love that I don't think (much) about the bad stuff. I really hated that they had the news turned on in the POFQ food court (though understandibly) during Wilma. I wanted my Mickey cartoons!

 

[SunFloridaDisney]

GAGWTA!

I stopped in here a few weeks ago, asking for good thoughts/prayers for my upcoming surgery. Going in we were expecting an ovarian cyst, but turns out it wasn't that. Actually had an infection/fluid buildup in the tube, but due to the size etc. the CT scan report read it as a solid mass cyst.

Anyway, thanks for thinking of me. Surgery went well, but I have new sympathy for everyone dealing with any kind of medical issues. I haven't had surgery in over 10 years, and I don't know if its the age thing (I'm 48 now) but I really had a tough time with the anasthesia, and this was a fairly simple laparoscopic procedure.

Keeping all of you in my prayers.

 

[snappy]

Congrats on your results, SunFloridaDisney!!! Great News!!!

 

[SillyMe]

Hi ladies. I'm hoping someone can help me out. My mom's cancer is intraductal (sp?) cancer, borderline invasive. The radiologist said she definitely needs radiation, but she might need chemo...it's up to the oncologist. If she doesn't get chemo, the radiologist will give her 10 booster treatments of radiation.

So, she had an appt with the oncologist today. He told her that 2% of her body needs chemo. It's her decision as to whether she will receive the chemo or not. She said it seemed he was pushing her to take the chemo, which she's scared to death to do. She doesn't want to do it if it's not necessary. He explained that there is some new test that costs about $3,500 to get more in-depth info on her cancer cells. I don't know details, I don't know the name of the test. Everything is pretty vague. My sister and I have offered over and over again to go along to the doctor with her, but she insists that her and my step-dad don't need us there. In the meantime, she's so confused and can't think straight, that we kind of have to guess and read between the lines. She hasn't even asked him what stage it is. I'm trying to explain the best I can to you what I've gotten out of her. I don't know if it makes any sense to you or not.

Anyway, she has opted for this test, because she's hoping it will give her more info to base her decision on regarding the chemo. Is anyone familiar with this test? Does anyone have any insight regarding the need for chemo? It's a decision only she can make, and she's pretty adamant about not doing the chemo, but we want to try to help her as much as we can. She was pretty optimistic about this whole ordeal until they mentioned chemo. She's becoming quiet and upset and confused.

 

[Pea-n-Me]

Sorry, Silly Me, this can be such a difficult thing sometimes. Let me see if I can explain it.

Invasive cancer means it leaves the original site (as opposed to non-invasive cancer which stays in a capsule). When invasive cancer leaves the original site it can travel elsewhere in the body via the blood and lymph systems.

Radiation is meant as a local treatment. It cleans up any remaining cancer cells locally - ie the breast and nearby areas.

Chemotherapy is meant as a systemic treatment. It is meant to kill any "renegade" cancer cells that may have traveled elsewhere in the body and began to settle there - ie distant organs. This process is known as metastasis. When people die of cancer this is why: metastasis.

So what does this mean? If she has a component of invasive cancer, some cells may have gotten out distally (they may not have; but they may have). Chemotherapy is thought of as an insurance policy to treat cells that may have gotten out. Does having chemo mean one will never die of a metastasis? No. But it improves the odds that you won't.

One indicator of whether cancer may have spread is testing the lymph nodes nearby under the arm. If they are negative that's good. If one or more are positive it means the cancer traveled at least that far. With the sentinel node biopsy procedure they identify the first node after the tumor and test just that one. If it's negative they leave the rest alone; if positive they take more out and study them to see how many are positive.

With any invasive cancer they offer chemo. If one or more nodes are positive they offer even more chemo. (I had one positive node so I got 8 doses; had the node been negative I would have only needed 4, for example).

The test you are referring to I bet is something we talked about here several months ago. The name escapes me right now but they are looking in depth at the lymph nodes to check for evidence of micrometastasis (which would make an otherwise negative appearing node known to be positive). Does anyone remember the name?

I would think that you alone could make an appointment with your mother's oncologist to get an explanation of things if your mother doesn't want you to be there. I'm sure she's terrified of chemo. I was as well. But I learned to welcome it and think positively about it because it was the best hope I had to live to a ripe old age. There are times when people refuse chemo when they know all the facts, though, and that decision has to be respected. It would be good, though, if she really understands what the implications are. How old is your mother, btw? My mother who is 80 has already said she would not have chemo should she get cancer. I think every case is different and I would hope she would consider it if it would help her, but I guess I'd have to live with her decision if she ultimately didn't want it. Good luck.

 

[NHAnn]

Yep, I felt that way about WDW even BEFORE breast cancer

OK...question for those of you who have been on or are on Tamoxifen or Arimidex. I've been on my study drug for about 9 weeks. No noticeable side effects except some achiness/stiffness in my legs. Until last weekend ...Saturday night, and then again yesterday, I noticed a mark on my finger on my right hand. Saturday it was the inside of the ring finger, yesterday the top of the pinky. About the size of a quarter. Purpley-blue at first for a few hours then fade to red like a bruise . THe one from Saturday was gone by Monday and the one from yesterday is red but fading away liek the other did.. No swelling or pain, just the discoloration, and no where other than the fingers. Weird....and the trial nurse today was baffled and said she'd run it by the Onc and to keep her posted if it continued. (DH insisted I call and run it by them...he said he didn't like that it seemed to be a bruising/clotting/vascular lookign thing.) I see my PCP in a couple of weeks so I'll bring it up to him too.
Any thoughts?

GAGWTA!!!

 

[SillyMe]

Sorry, Silly Me, this can be such a difficult thing sometimes. Let me see if I can explain it.

Invasive cancer means it leaves the original site (as opposed to non-invasive cancer which stays in a capsule). When invasive cancer leaves the original site it can travel elsewhere in the body via the blood and lymph systems.

Radiation is meant as a local treatment. It cleans up any remaining cancer cells locally - ie the breast and nearby areas.

Chemotherapy is meant as a systemic treatment. It is meant to kill any "renegade" cancer cells that may have traveled elsewhere in the body and began to settle there - ie distant organs. This process is known as metastasis. When people die of cancer this is why: metastasis.

So what does this mean? If she has a component of invasive cancer, some cells may have gotten out distally (they may not have; but they may have). Chemotherapy is thought of as an insurance policy to treat cells that may have gotten out. Does having chemo mean one will never die of a metastasis? No. But it improves the odds that you won't.

One indicator of whether cancer may have spread is testing the lymph nodes nearby under the arm. If they are negative that's good. If one or more are positive it means the cancer traveled at least that far. With the sentinel node biopsy procedure they identify the first node after the tumor and test just that one. If it's negative they leave the rest alone; if positive they take more out and study them to see how many are positive.

With any invasive cancer they offer chemo. If one or more nodes are positive they offer even more chemo. (I had one positive node so I got 8 doses; had the node been negative I would have only needed 4, for example).

The test you are referring to I bet is something we talked about here several months ago. The name escapes me right now but they are looking in depth at the lymph nodes to check for evidence of micrometastasis (which would make an otherwise negative appearing node known to be positive). Does anyone remember the name?

I would think that you alone could make an appointment with your mother's oncologist to get an explanation of things if your mother doesn't want you to be there. I'm sure she's terrified of chemo. I was as well. But I learned to welcome it and think positively about it because it was the best hope I had to live to a ripe old age. There are times when people refuse chemo when they know all the facts, though, and that decision has to be respected. It would be good, though, if she really understands what the implications are. How old is your mother, btw? My mother who is 80 has already said she would not have chemo should she get cancer. I think every case is different and I would hope she would consider it if it would help her, but I guess I'd have to live with her decision if she ultimately didn't want it. Good luck.

My mom is 66 years old. It's not the age factor that is making her refuse the chemo. She's scared. She's afraid of getting sick. She's afraid of the side effects. My sister suggested that we call her oncologist for details, but I didn't know if he would discuss it with us or not.

Her lymph nodes did test negative. I believe the oncologist told her she would have 4 chemo treatments, just as you said, should she decide to take them. So far she's refusing to do it, but I can tell she's looking for our opinions and questioning her own decision. She has said she doesn't want it, but then she's said she's going to wait until the results from that test come back, which is in 2 weeks. So, in the meantime, I'm trying to get as much info as possible for her and for us to help her.

Thank you sooooo much. You're explanation really helped me understand the difference between chemo and radiation treatments. It makes sense to me now. Now maybe I can try to explain it to her.

 

[snappy]

Pea-n-me, I remember the discussion about that test, and remember my obsessing about how "expert" my pathologist was when my lymph nodes were checked. Can't remember the name or any other details though.

Sillyme, it sounds like your mother really needs you. It does not sound like she is writing things down, questions to and answers from the docs, etc. How helpful is her husband at her doctor visits? Is he trying to absorb the info? Also, I think it would be helpful to have copies of her pathology reports.

As far as chemo goes, it is a fine line between giving chemo if you don't really need it and refusing it when you do need it. If your mother is otherwise in good general health, it seems that chemo should not be ruled out. My reading indicated that if the tumor was greater than 1 cm regardless if the lymph nodes were clear, chemo is the standard of care. Actually I think many doctors would recommend chemo even if the tumor was smaller than 1 cm, from .5 to 1 cm is a gray area. We are talking about INVASIVE tumors here, not DCIS. But it all depends how aggressive her cancer otherwise is (Laurabelle is a case in point). I think to help your mom you need to know more about her specific cancer. This is why the pathology reports are so important.

At the time of my diagnosis I did not know about the test for micromets in the lymph nodes. I think I would have opted for it. In my opinion, the more info you have the better. If you can avoid chemo safely without jeopardizing your future, it is worth it.

 

[snappy]

Ann I take Tamoxifen, never had an marks or discoloration like that. I do have achy knees, legs and hips, nothing I can't handle. Some of that is just age related for me.

 

[SillyMe]

Pea-n-me, I remember the discussion about that test, and remember my obsessing about how "expert" my pathologist was when my lymph nodes were checked. Can't remember the name or any other details though.

Sillyme, it sounds like your mother really needs you. It does not sound like she is writing things down, questions to and answers from the docs, etc. How helpful is her husband at her doctor visits? Is he trying to absorb the info? Also, I think it would be helpful to have copies of her pathology reports.

As far as chemo goes, it is a fine line between giving chemo if you don't really need it and refusing it when you do need it. If your mother is otherwise in good general health, it seems that chemo should not be ruled out. My reading indicated that if the tumor was greater than 1 cm regardless if the lymph nodes were clear, chemo is the standard of care. Actually I think many doctors would recommend chemo even if the tumor was smaller than 1 cm, from .5 to 1 cm is a gray area. But it all depends how aggressive her cancer otherwise is (Laurabelle is a case in point). I think to help your mom you need to know more about her specific cancer. This is why the pathology reports are so important.

At the time of my diagnosis I did not know about the test for micromets in the lymph nodes. I think I would have opted for it. In my opinion, the more info you have the better. If you can avoid chemo safely without jeopardizing your future, it is worth it.

You're right. She's not writing things down and asking questions that should be asked. I think she's very overwhelmed and can't think straight right now. I have asked her multiple times what Stage the cancer is, and she still hasn't remembered to ask the doctors. She has a copy of a diagram he drew for her and she showed that to me yesterday. He had written on there borderline intraductal/infiltrating invasive. Her tumor was 2 cm. From the research I've done, it seems to me she might be between Stage 0 and Stage 1.

As far as her needing the chemo, they've given her the choice, so I'm not sure what to think. I'm not sure if she doesn't "need" it, or is just refusing it. We're hoping this test will shed some light and help make her decision a little easier or more clear.

My step-dad is going to all appts with her and he's very level-headed. He's also been through this before. He lost a former girlfriend (many years before he met my mom) to breast cancer. He took care of her until she died, so this is all too familiar to him.

I think I will take things into my own hands and start writing down questions for her to ask. Maybe that will help her. She's so overwhelmed, we're just trying to do the best we can to make this as easy as possible for her. Besides herself to worry about, she has...right now...2 brothers with cancer also. Her one brother has been battling kidney cancer for 2 years now. Her other brother was just diagnosed several months ago with colon and lung cancer. This has made this whole ordeal even harder on her. Thank you so much for your help.

 

[MNSusan]

Hi, I'm posting here for the first time. I had a mammogram last week and got a call back yesterday that they wanted to do more views... today. I had the additional views today, found out that there are micro calcifications in the breast and was scheduled for a stereotactic core biopsy... tomorrow.

I have no personal or family history of breast cancer. I'll be 50 in a couple of weeks.

I've only started to research the possibilities, and I know that statistics are in my favor. From what I've ready, only 20% of micro calcifications are cancerous and are usually DCIS, which is fairly easy to treat.

I'm feeling fairly upbeat. My style is to just put one foot in front of other and take things as they come.

The only thing I'm feeling a little nervous about is how quickly things are moving. Phone call one day, additional views the next, biopsy the next. Is that typical?

GAGWTA!