Dis Breast Cancer Survivors - GAGWTA!

[snappy]

I won't be helping with cleaning up the mess in family members' homes after the flood. I feel it is not worth the risk of lymphedema. I'll be on the cooking committee. Scared of being cut, mosquitos, etc. I am even scared of letting my husband go into the houses. There are I am sure some items that can be salvaged, especially from the second floor, but I don't want him breathing in the mold. I have received a copy of an email that detailed what the long term risks are of exposure (I am talking about toxic mold spores here, not the toxins in the flood waters). I am just not sure if any items in a house that has been submerged up to 10 feet for almost 2 weeks and is still submurged is worth compromising your future health.

Anyone on this board have further insight into the risks of breathing in airborne mold spores, especially immune system problems? I sure would love to get insight from an infectious disease doc.

 

[MinnieM3]

I was very lucky to only have a sentinal node biopsy and it was negative. A friend had more removed and has lymphedema.

Looks like Ophelia will miss us, if she makes up her mind and moves somewhere...anywhere... argh!

GAGWTA!

 

[Daxx]

Hi Ladies! I posted this on an individual thread, but Pea-n-Me sent me here and said maybe some of you could help? Here's my OP:

Went for the mammogram today. After I got done, the radiologist found 3 tiny (and I mean pin-point) calcified spots and sent me for a round of magnified mamms. When I got those done, radiologist told me that this was only in 1 breast and it was most likely benign w/ 1% chance of being cancer (or start of cancer). She said I had the option of waiting 6 mos. for another mamm. to look for changes OR have a biopsy. I opted for the biopsy. Have to call gyn in the morning to schedule.

However, here's what I want to know ... what can I expect for the biopsy procedure?! What will happen? Are there any other tests that I should have other than the biopsy?

I am not nervous b/c when I went to see the radiologist, I said "So, how bad is it?" and she said "How bad is what?" and I said "It's cancer, isn't it?" and she said "Oh, no, no, no ... just calcifications which are more than likely benign, 1% chance of cancer. However, these calcifications can be the onset of cancer". I figure go for the biopsy and nip things in the bud rather than sit and wait. I am the type of gal who takes charge of her health.

Thanks for any input/insight/experiences you can relate. I appreciate it immensely!!! Oh -- please feel free to PM me!

Warmly,
Daxx's Wife

 

[MerryPoppins]

Sounds like you have a wonderful attitude! Good for you for taking charge. I felt the same way. I had DCIS, an early stage breast cancer. It's been almost 4 years since my biopsy, so I'll try to remember clearly. I had to be very still for a long period of time. I think that was the hardest part. They didn't want me to move at all. The table had a hole in it and my breast was in the hole. They cranked the table up and they sat on chairs underneath. It was very strange. I remember joking that I felt like my oil was being changed. I had what they called a needle core biopsy. There is more than one type. They gave me a shot. It hurt, but wasn't so painful that I couldn't stand it. The procedure wasn't too bad. Again, just being still was difficult. My nose itched and they had to scratch it for me.

I had a mastectomy when some doctors said I didn't have to go to that extreme, because I wanted the best chances they could offer me. (Besides there would only have been about half a breast remaining anyway.) My cancer was fast-growing and they couldn't promise me they'd get it all unless they took my whole breast. I didn't think the gamble was worth it. Not everyone feels the same way I did and that's okay. Hopefully you'll have wonderful news and it won't be cancer. But if it is, we'll be here to support you and your decisions.

Please keep us informed and I'll keep you in my thoughts and prayers. Hang in there and think positive!

Snappy, thanks for the info. I'm careful about some of those things. But I guess since I did the sentinal node biopsy and they only took one node, they didn't feel I needed to worry too much.

 

[Pea-n-Me]

GAGWTA!!

Daxx, glad you made it over. You'll get lots of information and support here.

 

[snappy]

Welcome, Daxx's wife.

I too had the sterotactic core needle biopsy, April 2004. It was the least invasive biopsy and apparently the most effective one for calcifications.
I don't think it is used when they is a palpable mass.

One thing I would ask is for a copy of the radiologist report, there will be a written report of the diagnostic (magnified view) mammogram. On my report there was a number, called a BIRAD number. The sumbers go from 1-5, with a 5 being the most suspicious. Mine was a 4, a biopsy is strongly recommended for this leve Actually, I ask for copies of all test results. I take a file of the results to doctor visits with my written questions. It's a place to collect all this stuff.

The report was sent to my GYn who referred me to a surgeon. All the surgeon did at the initial visit was examine me and look at my mammos, both the suspicious ones and prior ones. Both the radiologist and the surgeon said ther was a 80% chance of this being benign. His office set up the biopsy, it was done in the radiology department of the local women's hospital, by the head radiologist.

It was not painful, and I only had a small bruise afterwards. It was a bit uncomfortable lying face down on the table. I also had two areas that needed to be sampled, so it took a while. Also, one of my areas was very close to the skin surface so that area was challenging, there was a lot of discussion by the nurses and the doc. There was at least 5 nurses throughout the procedure plus the doc. One nurse remained by my head, and reassured me, that seemed to be her job. There was also a CD player playing close to my head playing soft, relaxing music. The room was very cold but they used warmed blankets throughout which was a nice touch. I did get the shivers for awile, not sure if it was the temp in the room or just being nervous. It passed quickly. My mom went with me, I think it is a good idea to have someone to take you home.

Afterwards they gave me a cold compress and I took tylenol for pain.
I was fine the next day and received the results from the surgeon the next day over the phone.

As far as other tests, after I was diagnosed with 2 areas of DCIS (early stage cancer which has not spread out of the ducts) with only a small .1 cm area of invasive cancer, I was scheduled for further tests at the hospital, full body bone scan and Cat scan. One area of the spine they zeroed in on but after xrays they said it was ok.

I wish you good luck. Hopefully, you have this scheduled timely. It will lessen any possible concern.

This procedure is much improved. My sister had it in 1997 and it was much more difficult. Another friend had one 5 years ago and she too found the whole thing harder. Especially at a facility that does a lot of these, the medical staff is very adept. I think the technology took a big leap forward around 1999-2000 when new machines were invented and the hospitals got them.

If you have any other questions, ask here or feel free to pm.

 

[Daxx]

I called my gyn today, and they hadn't received the report (this was around 11 am). Gyn's office called the radiologist and they said they'd fax over report later in the afternoon. Unfortunately, gyn's office closed at noon today, so I have to wait until morning to get some answers.

I def. know that I want a biopsy, even if gyn says it's not necessary. I NEED to know! I cannot just "sit" on this thing for 6 mos. or whenever I'd have to schedule another mamm. I want answers YESTERDAY!!!!!

Also, I fully plan on following whatever course of treatment they suggest, should treatment be needed. Of course, I will come here to ask "is this enough?"

While I liked the radiologists "1%" thing, it still tugs at my mind. I will not stop at just leaving it alone. I believe that I need to exercise every option, and the main one being a biopsy.

I have to go to the surgeon tomorrow for my appendix, so if I am not satisfied w/what gyn. has to say, I will ask surgeon for a referral. Hey -- maybe he can do the breast at the same time as the appendix and I can have answers before I leave from appendix removal!!! Now, wouldn't that just be convenient?! I could never get that lucky!!!

Does anyone know the percentage of people who have benign calcifications? I'd like to know that stat just out of curiousity. Can't seem to find any info. on the net.

Thanks to all for answers, etc. I sincerely appreciate them and all of your kindness. As soon as I get BI-RADS from gyn., I will come here and ask all about them! If anyone has any questions that I should be asking gyn., please post them. I am at a loss and know that, an hour after I hang up the phone w/gyn., I'll come up w/a zillion questions that I should have asked.

I am ducking out of my classroom at 9 am tomorrow morning to call gyn. Hopefully, I can get some answers!

Warmly,
Susan

 

[Pea-n-Me]

I have to go to the surgeon tomorrow for my appendix, so if I am not satisfied w/what gyn. has to say, I will ask surgeon for a referral.

Susan, good luck with your appendix appointment tomorrow. What I would seriously ask this surgeon for is the name of a good breast surgeon. Ask him if it was his wife or sister who had some issues on her breast, who would he refer them to? Then I'd make an appointment with that particular breast surgeon or another who is associated with a good medical center.

Radiologists are specialists in reading images. GYNs are specialists in female reproduction organs. Breast surgeons are specialists in matters of the breast.

 

[Lessa of Pern]

Thank you snappy .

I am shocked that this is regarded as a day surgery over there. We don't have the need for health insurance in the UK. We have free health care (funded through our taxes of course). The only thing we pay for is prescription drugs - £6.40 per script ($11).

My mum has opted NOT to have reconstruction but will still be in hospital for a week. Lots of after care is given during her stay and there is no way anyone is sent home within 48 hours. WOW that sounds so fast to me. Just different here I guess. She'll start gentle exercise very soon after surgery as she is having lymph nodes removed. I think she'll meet with a physiotherapist very quickly after her op. I'm not vey sure of details right now to be honest.

Will give updates as I know them this week.

GAGWTA

Louise

we're subject to the mighty for-profit insurance industry, which is out to save $$$.



my hysterectomy was done on a thursday morning, and I was sent home friday night. actually, the doctor decided home was a better option -- once I got out of bed and walked around, that is. he didn't want me lingering in the hospital with so many germs floating around.




chemo really knocked me for a loop this time. I had the treatment thursday night and felt too sick to go to work until yesterday. made it through yesterday only by the grace of compazine. feeling much better today, but very stressed -- it's a bad week at work, and I'm doing a lot of last minute planning for dd's bat mitzvah on saturday.

 

[laurabelle]

Good Morning GAGWTA sistas!
Catching up - Sorry it's gonna be long...

I'm doing better everyday, thank God! Still having sleep issues so my G.I. doc is letting me (hesitantly, but he's good and "listens" to me!!!) taper off the high dose steroids a little faster, at 10mg/wk instead of 5 - whooooo hoooo! I see my onc today, then tomorrow it's back to the hospital (outpatient) for the 2nd infusion of Remicade, the immune suppressant drug I'm getting. This is the one they're a little more concerned about, since I've had 1 treatment and now the antibodies are there, but I'm just praying it will work without hurting me.

Disers, you'll appreciate this, Remicade is made partially of human protien, and partially of mouse protein! That was kinda freaking me out a little bit about the mouse, I was imagining little brown mice running through my veins, yuck!!! But then I realized, hey girl, that's Mickey helping me out! So I'm walking around with the biggest hidden Mickey of them all! lol! Hmmmm....I guess there was more than one reason I got Mickey in my tattoo...he's my hero!

I received the summary of my 8 days in the hospital yesterday Thank God for good medical insurance! My heart really goes out to those who are uninsured or underinsured...it sure wouldn't take long to wipe an average person out.

Snappy- I got to talk to my friend Nik in Mandeville, LA on Tue. and she finally got her chemo that day! She and I spoke for an hour, it's amazing the crime that is going on. Yes, all around even in the suburbs. They have 10 people in their home sharing the generator. Her husband checked on their neighbor's, who left, and their home broken into, but the people must have been scared off because nothing was taken.They try not to drive around much, with the shootings and car jackings...
It's going to be a long, hard road for all. Many long term impacts this devastion is having...
I would try to wear a mask around if I were you...can you get any? I just heard mail service is returning, so I'm getting a package together to mail to Nik...do you need anything???

Susan- I'm glad Linda brought you over! My sil had calcifications and could have "watched" it but opted to have the stereotactic biopsy done. Her's came back benign, thank God, but she'll be watched a bit closer now. I didn't have calcifications, so I don't have % on hand, but they are showing changes in your breast, which are likely benign, but need attention to be paid to them. A good website to look at is Breast Cancer.Org

Everyone on this thread knows how anxious you feel, waiting and worrying that your voice won't be heard, that things are taking too long, that you just don't know what you're dealing with and what decisions you might have to make...it's overwhelming. One day at a time, sounds simple...but it works. Insist that you want the test, I doubt you'll meet up with any resistance to it. The standard answer, unless they find something more highly suspicious, is to watch and wait. Good for you for being proactive! You'll be in my thoughts and prayers...

Louise- I hope your mum is doing well! It's sounds like they compassionately care for the whole patient there... I'm glad she's in good hands.

Lessa- You've got alot on your plate sista! Please allow yourself rest and help in all of this...
Happy Bat Mitzvah to your dd!!!

 

[Daxx]

GAGWTA!

I am going to def. ask both gyn. and surgeon for breast surgeon referrals today. I will go to see both (if they're different) if I have to or feel the need to.

I thank you all for your help, prayers and kindness as I begin this journey. I promise to keep you all posted!

Warmly,
Susan

 

[snappy]

GAGWTA!

I am going to def. ask both gyn. and surgeon for breast surgeon referrals today. I will go to see both (if they're different) if I have to or feel the need to.

I thank you all for your help, prayers and kindness as I begin this journey. I promise to keep you all posted!

Warmly,
Susan

Susan, Pea-n-me is right on. The choice of a surgeon is very important. When my gyn called me, he suggested a particular doc and he said he would send his wife or mother to this doc. I also asked other friends and acquaintances and picked their brains. I talked to women who were married to docs and guess what they also went to this surgeon. There was one other doc who was also recommended, but she was actually ill when I was going through this so I saw her associate for a second opinion. She was very good, my sister actually used her for her surgical biopsy but I did not find she was as experienced, she had only been exclusively doing breast surgery about a year. But I guess my message is you may consider having a second opinion, especially if you encounter resistance on scheduling the biopsy.

 

[snappy]

we're subject to the mighty for-profit insurance industry, which is out to save $$$.


chemo really knocked me for a loop this time. I had the treatment thursday night and felt too sick to go to work until yesterday. made it through yesterday only by the grace of compazine. feeling much better today, but very stressed -- it's a bad week at work, and I'm doing a lot of last minute planning for dd's bat mitzvah on saturday.

I thought the bar mizvah was approaching. It must be a crazy week, especially dealing with the chemo too.

Hope you feel better this morning and continue to improve.

 

[Miss Mickey Mania]

Lessa, how are you feeling now? I hope you're much better and able to get on with bat mitzvah plans. That's come along so quickly all of a sudden!

Update from me - Tuesday, we saw her just 2 hours after she came out of recovery. She was able to speak to us but kept falling off to sleep and spoke so very slowly. She was totally dosed up on very strong pain relief.

She was pretty good last night when we saw her. Very alert but can't move very well yet. Limited movement on her left side but she was able to lift her arm and do very gentle exercises which was good. Two drains in at the moment and an antiobiotic/saline drip in her neck - ughhh.

Someone decided to try to put her in her chair around lunchtime and she fainted. Blood pressure was too low so she will try again today. This is part of the reason why I can't get my head around you ladies here being sent home so quickly. I just find it scary. My mum couldn't even get up from her bed without passing out. Anyway she soon recovered and is eating well. The only pain relief she needed yeserday was paracetemol - your equivalent would be like Tylenol as I know the US doesn't have that drug. I found that amazing.

She's seeing her physiotherapist today again. I won't see her until tomorrow as I am going out tonight but I'll hear from my dad how she is.

Louise

 

[snappy]

Laura, glad you heard from your Mandeville friend Nik, and also that she received her chemo treatment. I read something in the paper today that I thought I would pass along, that patients having chemo should avoid exposure to the mold. I just want your friend to be safe. Even if she did not get water in her house, she may attempt to help others not so fortunate. She should at the least check with her onc doc about this issue, IMHO.

I'm glad you updated us on your health status, it sounds like you are fighting hard. Your positive attitude I am sure contributes greatly. I love the hidden Mickey in the form of Remicade. That was a lol moment for me for sure.

I am going to try to get masks for family members going in to do clean up.
DH's two brothers have already gone back in, no water. One sister in Slidell is ok too, no water, but no electricity, they are sharing a generator and living off MRE's. They even brought some here when they visited us last week, they made one for us and we all tasted it, meatloaf and mashed potatoes, definitely not a low calorie selection. His other sister from Metaire had about a foot of water, her son has already buried the contents of her fridge and ripped out the carpet. He needs to go back in and cut out the wall boards before it gets any worse. I am sure the mold has taken over since the house has been closed up all this time.

My mother-in-law's house and my good friend's house (Lakeview) were impacted by the levee breaches pretty badly. I am doing my best to discourage my DH from going in to either of them. We realize that neither one will be salvagable, but he seems bound and determined to try to go in and get contents (mostly mementoes and the like). I am really 100% against this as I think there will not be anything in worth salvaging compared to risking his future health. I am not winning the battle. It is a moot point right now, whereas people are going in to some West Bank areas (including some of my relatives), much of Jefferson, and Harahan, residents are not being allowed into N.O., even the areas of uptown close to the River that are high and dry. Maybe next week, they'll be allowed in. But not in Lakeview.

Thanks for offering to send something. Our stores are pretty well stocked herre now, and it is much easier to get gas. We are lucky. The main issue is traffic, it takes a long time to get anywhere. I am trying to do all errands at off times, but even the "off" times are crazy. I am sorry now that DD's are doing swim team and soccer, it is just more trips. Life has to continue though, we are doing a lot of carpooling. Kids need to go back to normalcy.

GAGWTA everyone!!!

 

[snappy]

Lessa, how are you feeling now? I hope you're much better and able to get on with bat mitzvah plans. That's come along so quickly all of a sudden!

Update from me - Tuesday, we saw her just 2 hours after she came out of recovery. She was able to speak to us but kept falling off to sleep and spoke so very slowly. She was totally dosed up on very strong pain relief.

She was pretty good last night when we saw her. Very alert but can't move very well yet. Limited movement on her left side but she was able to lift her arm and do very gentle exercises which was good. Two drains in at the moment and an antiobiotic/saline drip in her neck - ughhh.

Someone decided to try to put her in her chair around lunchtime and she fainted. Blood pressure was too low so she will try again today. This is part of the reason why I can't get my head around you ladies here being sent home so quickly. I just find it scary. My mum couldn't even get up from her bed without passing out. Anyway she soon recovered and is eating well. The only pain relief she needed yeserday was paracetemol - your equivalent would be like Tylenol as I know the US doesn't have that drug. I found that amazing.

She's seeing her physiotherapist today again. I won't see her until tomorrow as I am going out tonight but I'll hear from my dad how she is.

Louise

Sorry you had the fainting scare with your mom. I think you will find a big difference when you see her tomorrow. I'm glad she is seeing the physical therapist. Getting the arm moving again, however slowly is probably the single most important thing right now. Since she is saying longer, I am hoping they will be able to remove the drains before she leaves. If not, try to learn how to help her empty and measure the outflow. I found this difficult to do, really sort of awkward, my husband was a huge help.

Glad to hear she is off the strong drugs. I think they cause more problems than we realize. I would not be surprised if some had lingered in her blood stream from Tuesday and may have contributed to her fainting spell.

I think younger women are able to cope with leaving the hospital a little earlier. Especially if they are not dealing with other health issues as well as the BC. I am not sure about your mom's age or general health status but I am convinced it is a factor.

Hope she continues to improve.

 

[Daxx]

GAGWTA!

I talked to my gyn's office. He's out today, but left message to staff to let me know that I could schedule the biopsy for my "peace of mind". He felt I didn't need one but if I wanted it, he'd ok it. I am going through his "group" of surgeons. They do the work at the same place where I had my mammogram done. I like the place and feel they are extremely professional. The "group" strictly does breast surgery, from what the gyn's staff said.

I asked about the transcript from the mamm. and they said "calcifications in right breast prob. due to fibrocystic changes". I asked about BI-RADS and they said that info. wasn't listed, then said it was a good thing b/c if there any major info., it would have been on the transcripts they sent re. the mammogram. However, that still doesn't "pacify" me. I want answers, not probablies.

I am scheduled for a stereotactic core biopsy on Mon. 9/19. I was shocked to get such an early appt! I guess they have staff that does these all day, every day ... so they're just popping me in. It's not like they heard my name and said "We have to get you in here immediately!" They just said "How does Mon. the 19th work for you?" I asked if they had a "better time" but the 2:30 appt. (the last time scheduled for these) wasn't until the end of Sept. Of course, there is NO WAY I wanted to wait that long (that's long, IMO!). I jumped at the Mon. appt. just to get it over with.

Of course, one medical thing after another ... on Tues., I am going for my appendectomy. Ugh!!!! I figure that I'll be so out of it on Tues. that I won't even be thinking about the biopsy results and by the time I'm functioning, the results will be in. If you all knew me, you'd know I'd be calling Dr. the next day looking for biopsy results!!!!

A few quick questions for those of you have gone through this: Will I need someone to come w/me or can I go myself?! Does anyone know how long the procedure takes? How long does it takes to get stereotactic biopsy results?! Oh, yes -- I have very small breasts -- barely fit an a cup. Is this table going to work on me?! I mean, I doubt my breast will even drop down into the hole!!!! That is how flat chested I am!!!! What if it isn't "big" enough to drop down low? What will they do?!!? Will they remove all the calcifications? I am sure that there were only 3 spots.

Thanks, again, to all of you for tolerating me. I know I have a zillion questions, which might sound stupid ... but I am so grateful for your answers/help/advice/etc.

OK - ETA -- I read (on the internet) that they put a "tag" in your breast to show the area during future mammograms. What!? What is this? What is it made of? I am just curious!!! Or, does not every surgeon do this tag thing?!

Hugs to each and every one of you fabulous ladies!

Love,

Susan

 

[snappy]

Wow, Susan, you have the ultimate distraction with appendectomy surgery.
Good luck with that Tuesday.

As for your questions, I think it is not absolutely necessary to have someone with you. My mom went with me and I will tell you it helped alot. I had an ice pack to hold over the area, could not have kept it on if I had to drive myself home.

Mine took longer than normal since there were two distinct areas. My impression was in my case that they were not trying necessarily to remove each cluster of calcifications in its entirety. I obviously had more spots than you. They did sample each area extensively. I am not sure how long it took, I would say I was at the breast center for at least 2 hours. As I said before though one area was very close to the skin surface and that did complicate matters. I would bring some tylenol with you and some reading material. I always find I spend a lot of time waiting. They did mammos of the area first to pinpoint the areas to be sampled, then later I was taken to the room in radiology where the procedure is done. So there is some shuffling around to deal with.

I can't speak to your question about breast size making any difference, as I have the opposite problem.

Hope this is helpful.

 

[Laurajean1014]

GAGWTA!
Will I need someone to come w/me or can I go myself?! Does anyone know how long the procedure takes? How long does it takes to get stereotactic biopsy results?! Oh, yes -- I have very small breasts -- barely fit an a cup. Is this table going to work on me?! I mean, I doubt my breast will even drop down into the hole!!!! That is how flat chested I am!!!! What if it isn't "big" enough to drop down low? What will they do?!!? Will they remove all the calcifications? I am sure that there were only 3 spots.


Daxx - sorry to hear about your surgery and now your biopsy. I recently went through the same thing (biopsy). You can drive yourself to the hospital/clinic, office. The procedure takes about 45 minutes. They put you in a modified mamo machine and take pictures. Once they have pin-pointed the area, they can start the biopsy. Ask for as much novacaine (in the breast as you desire).

Don't go back to work or anything. You maybe a bit sore, so take it easy.

The results take anywhere from 3 days to a week (a week in my case). Then , after the results are in, you will know if you need to proceed. At the time of extraction, they will try to take all the calcifications out, but they may not be able to. If it's benign, they may not operate.

Best of luck to you and let us know how you do.

 

[Pea-n-Me]

Susan, I didn't want to quote you on it but sorry, I had to about the breast size thing. Uhh, what we women have to go through!!

I'm glad you got an early appointment for the biopsy. I'll be thinking of you as I'm in the dentist chair myself that day!! If it's any consolation I did the same thing myself several years ago when, upon my first mammogram, they found a spot which they identified as "something to watch". They recommended waiting 6 months but I went ahead with biopsy anyway after consulting a surgeon I knew. It turned out to be a benign fibroadenoma but I never regretted doing the biopsy. You go girl!!

I'm having my annual mammograms tomorrow morning so I'm a little nervous tonight. Last year was a nightmare so I'm trying to stay positive and calm - I have to work tonight and will go downstairs to the breast imaging dept right afterward. P&PD is always welcome!