BC Friends

[Naniam]

I discovered late last night that an individual had been posting pedding their "wares".  I checked on the web site suggested and it is something from China and it truly upsets me when someone comes to these boards and uses them to make money from our plight!!!  I am not sure how this site is monitored by the medical professionals but I had great concerns for those newly diagnosed or going through some difficult times to run into these postings; it only causes more confusion and adds another layer of anxiety when you are already dealing with some tough issues.

To the Medical Professionals that monitor this site, I apologize if I have done something that is out of line.  I only wanted to warn all my BC sisters.  I am not sure how we are to deal with these individuals and this is the first of these I have seen here.  This is a wonderful site and I chose to take a stand.

[CCF-RN,MSN-rf]

Dear Naniam:  We will contact medhelp international and ask them to remove these postings.  We do not monitor comments.

[healthcareguerilla]

It looks like the posts are gone, so your alert must have worked.  Good for you.

[healthcareguerilla]

I just found one of the posts.  It is by Elainehz.  This certainly is spam and it makes me angry, too.  I've reported it as well.

[Avidhiker]

Thank you!  Seems like all the good boards get infiltrated by someone out there who needs to get a life!  HEAR US LOUD AND CLEAR:  STAY AWAY!

[Naniam]

Well, the post have now all been deleted.  When I saw them last night, I will admit I saw red!!!!  I had never seen anything like that on this site before and how dare, someone come and try to pass something off to us with all that we are dealing with or have been through.  I hope if anyone else sees anything like that on this site, they will also take a stand.

[who_is_this]

In the future, if you suspect a poster is breaking the rules or posting anything inappropriate, immediately click the CONTACT button at the top of the page, then select ADMINISTRATION from the drop down menu.  
Describe what happened, include the URL of the offending post if possible, and ask the administrator to review it.  He/she will remove it if it violates the rules of Medhelp.

That way, it won't sit there for days, possibly getting people suckered by it.

[Naniam]

I apologize if I did anything in appropriate or offended any of you.  Silly me was looking for someone to contact from Cleveland Clinic Breast Center and I clicked all over their name.  I have never even looked at the heading of this page.  Well, you can teach old people something after all.  

Sorry, if I offended or upset anyone.  The way I handled it sure took much of my time trying to warn everyone.

[boninclyde]

Thanks Naniam for letting me use your thread. They closed mine. I knew you would not mind. I hope all that are concerned finds this. Yes tomorrow is the day. Surgery will actually start at 11:00 and I should be out around 2:00. Today was pretty rough but I know I must get this stuff out of my body. Watch for Charley1986 to post to let you guys know how I am doing and I will post just as soon as I get home home and am able. Also please pray for Charley as her surgery date is quickly coming upon us. She is from the undiagnosed forum.
Charley, Naniam, Ziggy123 and you to cyn17. A special heart felts thanks for all your prayers. I know you all will be with me.

[boninclyde]

And thanks for warning. How cruel people can be to prey upon us.

[Under Forty Pam]

I am thinking about you today, hope everything is going well.  Let us know how you feel tomorrow.  I know you will be doing great very soon.

[ziggy123]

May I add a ditto to Under Forty Pam's note? I have been thinking of you all day...Prayers to you and your family.

[cyn17]

...and ditto, thinking of you. Right now you're probably buzzing on a Friday night morphine cocktail. ;-) You gotta find something good in all this!

[Montana girl 06]

Prayers for your surgery and recovery. I'm glad you're keeping us posted.

[Montana girl 06]

Ziggy, I haven't heard from you for awhile but have been thinking and praying for you, too. Any news on when your surgery is scheduled?

[ziggy123]

Thank you for asking. I really appreciate your thoughts and prayers. I posted to you just today on the mammogram thread. You and I share the same stomach issues, so I was curious about your endoscopy porcedure. My nerves are not letting my stomach relax at all. My surgery is Thursday. In at 8:30, wires at 10:30 and actual surgery at 1:30, and supposedly home by 4. It is a longer day than usual for this procedure because my surgeon (who was trying to get me in ASAP so I could be well on the mend before school starts) had to work around the radiologist's schedule.

[boninclyde]

Hi everyone, Mom is home now, and she's going to bed... she's fine...and tired and a little disorientated. Thank You, for all of your thoughts and prayers.

~Kristen~

[ziggy123]

Please give your mom all of our best wishes and prayers for a very speedy recovery!

[Montana girl 06]

Prayers for your recovery.

[boninclyde]

I am back. Got tired of laying in bed so I decided to post. I am feeling better. Still dizzy for some reason though. Things went well and doctor bent some rules to let husband stay with me as long as he could. He even let him wake me in the recovery room. When I was told before that they could not help with my anxiety or panic attacks (other than meds to relax which did not work)I was somewhat upset. This is a true medical condition that I have been diagnosised with for sometime. So my thinking was they should by law have to accomodate my disability. I started to say something but I didn't. So nice of doctor to help me out. It was a God send because I was really freaking out. Before I knew it they said tell hubby goodbye and that was it. All of the doctors and nurses were really great. I don't have any pain in the breast area it is numb. Only under the arm. Really sore their. I guess thats where they got lymph nodes from (4 I believe). Surgery was 3 1/2 hours. Around 2:00am I got really nauseated, dizzy and heart started racing. Dr. said he did not think it was from surgery or meds. As of yet I have not had any additional pain meds. My lymph nodes were all clear but have to be tested further (by additional pathology) to make sure. I will get those results in about 10 days. Going back to bed. Thank you for all your advice, prayers and concern.

[Montana girl 06]

Hope your underarm feels better soon. It's nice to know a doctor will break the rules when it's really important. Continued prayers for your recovery and for peace of mind.

[ziggy123]

So great to hear from you!!! We have been thinking of you! Could you feel our "good vibrations?" I am glad the your doctor was understanding and was willing to bend some rules for you. Could the nausea that you experienced be from the anesthesia that you had? I get very sick every time. It is my biggest fear with my upcoming surgery. You are on your way!!! I also hope that you underarm heals quickly.

[Montana girl 06]

I hope you can take it easy for awhile and let your body heal. Your other post said you're still tired, but that could be your body telling you to take it slow. Nice to have your posting again.

[boninclyde]

Today was a great day. Felt so much better. Up and moving around as normal. Yes I did need the rest. That anathesia is some kind of s_ _ _ t. Thanks for it though. My family was great through it though. Kids had bed pulled down and fresh ice water and coke waiting for me with a sign that said "WE MISSED YOU". Like I have said before I don't know how I got so lucky to have such a loving husband and kids. I have had a very rough life and they know everything. They knew when I was a child I wanted to go up and change the world so no other child would suffer and we do everything we can for other children so they will never fell the pain I felt. Like I said today was a great day.

[cyn17]

I am so amazed by how quickly you returned home! Is that usual? When my mother had her surgery, I think she was in the hospital for 2 or 3 days...although she did have the prep for reconstruction, which I believe you opted against for now(?).

I'm so happy your family has pulled together and is supporting you through this. I find my family does the same...and we try to find humor where possible. My mom certainly had ups and downs, but we (and friends) were there to help her.

Be kind to yourself and get plenty of rest. : )

[Naniam]

I have been praying, watching, reading and responding to your post.  Just seeing the bed turned down and the sign would have done me in, even in a druggie state!!!!!!!!

My daughter and family arrived late the evening of my first lumpectomy surgery and when she put my 4 1/2 month old sleeping granddaughter in my arms - I had to work hard and fast to keep from falling apart.

I am so glad that you have the surgery behind you.  I hope today was better than yesterday.  I hope here and elsewhere the "sisters" have been able to give you a warm fuzzy feeling.

Blessings

[boninclyde]

I don't know what I would have done without this site. I think I have your info and will go there soon so we can talk. Please go to the other site and send me a personal message with your info again to make sure I have it. Thank you for all your encouragement. I will let you all know my results Thursday evening as I go to see surgeon Thursday morning. Daugther has to have all 4 wisdom teeth pulled out also Thursday. I told her she better keep her wisdom. Wonder where they got the name?

[Montana girl 06]

There's a lot going on Thur. Ziggy has surgery, Phedor has a biopsy, and Boninclyde gets her results. Will keep you all in my prayers.

[boninclyde]

Yes lots going on tomorrow. I will keep you all in prayers also. We will be watching for everyones post letting us know you are all doing well.

[boninclyde]

Yes lots going on tomorrow. I will keep you all in prayers also. We will be watching for everyones post letting us know you are all doing well.

[boninclyde]

Sometimes I just hate these computers. Sorry for posting twice on several post . I guess internet is moving slow these past few days. Anyway I guess you got double the prayers. Sorry.

[boninclyde]

Well I am back from seeing my surgeon. I almost feel lost as I did not get all of my questions answered but I am making a list for the surgeon again, the pathologist and now the oncologist. Yeah thats right the oncologist. So much for the radiation I was told I would need months ago. I also did not get these blasted drains took out (day 8). I will post my path report with questions here as soon as a spot becomes availible(Or as soon as I get a corrected copy). This report is totally not like my other report. Makes me mad. I think they try to confuse people and/or intentionally try not to answer question because they worry about law suits or simply do not know. Check out some of the differences I have noted so far but not done yet. And my doctor or pathologist never uses stages.

REPORT #1                              REPORT #2 after masectomy
DCIS                                   Invasive Ductal Carcimona
Grade 3                                Grade 2
lobular extension                      nothing said about it
HRS - Don't do on biopsies             to be issued in addendum
Intraductal necrosis & calcif.         Nothing noted
                         NOW SAYS      Focal Papilloma
                                       Proliferative Fibro Change
                                       Biopsy site changes

No lymph node involvement. Strange Surgeon says he removed only 4, report surgeon and I have says pathologist tested 5. Report also has a typo error. Report says 0.9cm invasion. Surgeon said it should say 0.9mm. Which is referring to the size of the invasion. Second report also states tumor, which no tumor has been found. Surgeon does not know what the bee-bee knot was. But I will find out. Multicentric (whats that mean?) extensive DCIS is present, solid and comedo type with high grade nuclear features (what does feature mean?). DCIS is present in eight of fifteen (53%) histologic slides of breast tissue corresponding to sampling of an ill-defined 15 x 9 x 3 cm (Should be mm ?) area. All this coming from a very highly qualified facility. Supposed to be best on East coast.
Wow anyone got any insight? I'm feeling OK today but these drains really really hurt. May take out Tuesday or Wednesday.
Sorry I have not posted sooner but daughter had all 4 wisdoms cut out yesterday and she has had pretty bad pain. Will post more later. Sorry so long and complicated.

[mel43]

boninclyde: I know what it's like to be upset with the so called medical professionals. I can't help with the pathology report, they are confusing. However I do know about the power of prayer, please know you are in my thoughts and prayers. Stay strong (I know that's easier said than done)and I know you have a good family who are there for you and that means a lot.
I will pray for you!

[Montana girl 06]

The contradictions in your report are an eye opener. I guess even the best places make their share of mistakes. I see why you're frustrated. Hope you get some answers soon.

[Naniam]

Hi,  Got your note that you had sent me an e-mail but never received.  Go to other website as I sent you another PM so need to confirm correct e-mail address

I will see if I can make an attempt to help you with your path report.  Just remember doctors dictate these and another person listens and types what they say - sometimes those typing make mistakes.  I used to do that years ago and I worked hard to get things correct and never had much come back.  Much depends on how fast and clearly the doctor dictates.

I would think that when they were referring to the "tumor" they were talking about the invasive component of the DCIS.  The report stated 0.9cm which was supposed to be changed to 0.9mm (much smaller -- mm is much smaller than cm.) that is good.

The solid, comedo with high nuclear grade is giving them info about the aggressiveness of the DCIS - I think you said Report #1 put Grade at 3 but report #2 put grade at 2.  That one is kind of confusing to be.  Papillary is a description of the tissue under the microscope.
I do understand why you are seeing an oncologist since apparently you did have a more aggressive DCIS with a very small component of invasive tumor.  I am not sure if they will suggest treatment in IV or pill form - there are many options available now.  

The conflict in the lymph nodes removed could come from the surgeon not including the "sentinel" node in the count.   With me reading what you posted, I am encouraged that there wasn't any more invasive cancer found and that is what I think everyone was very concerned about.

Hope this helps.  I have been out of town and came home and looked here to see if you have posted.  

[boninclyde]

Oh Naniam. Thank you so much. I did not know you used to do this type of work. I will be getting another pathology report soon. No, I do not understand pre-surgery biopsy being grade 3 and after masectomy it is now a grade 2. I will also be sending my biopsy for a second opinion when they are done with my breast. So strange reading path report saying they are presented with the right breast of Ms. King. It's like ug did I lose something. Oh just a stupid twerp of my brain. I will let you know what the other patholgy report says. Went to surgeons office today and they removed 1 drain. You would not believe what a difference 1 drain makes. I was surprised it did not hurt at all. The other may come out Thursday but probably Friday. While there I got a copy of my complete record. The reading is pretty interesting. Not to many surprises. Best thing going for me. No lymph node involement. But still recommending chemo because of that one micro that say could have gotten by. One thing that really bothers me really bad is that today I had to sign a piece of paper saying it was OK for me to be in a research study for the sentinial node biopsy. Don't know how new this is. I though they had been doing for a while. I do wish they would have told me this was still under study before the operation and I may have opted to have more lymph nodes removed to be on the safe side. I know many doctors trust this procedure but not sure I would have. Just wish I would have been given a choice if I were going to be put in a study.  Extremely tired. Maybe another glass of wine then bed. As I have said Thanks to everyone who has/is helping me get through this. Kids are back at school so I am pretty busy which is good. Lots of road trips. Buses don't run here. 3 trips in the morning 3 trips in the evening.

Again Thank You All,
Bonnie

[Naniam]

If the first Grade, Grade III, was based on biopsy and the second one Grade II based on tissue from mastectomy, I would go with the Grade II.  I just want to remind you that you can have 3 different pathologist look at the same specimen and they probably will not come back all three the same.  The pathologist where I had the surgery checked mine and then when there got to be so many problems with not "getting it all" and no more tissue to remove and did I need a mastectomy, etc., I called the pathologist at the hospital where I used to work and he looked at the slides and then Baptist wanted the slides to review.  Three different opinions - two were the same and one read different.  Apparently there are different scales and staining techniques they can use and it varies some.  

The sentinel node study maybe was just one seeing how many nodes was removed beyond the sentinel node; any postive if sentinel negative; that kind of thing. Did they not explain why the study was being done?   Surgeon at Winston told me if sentinel was negative, he doesn't go beyond that. I had a total of 8 removed and was told I could possibly develop lymphedema.  So the less they remove, the better off we will be down the road.

Hope you get the other drain out soon -

[Montana girl 06]

As a first grade teacher, thanks for encouraging your daughter to go to school. The routine is good for her (as long as she's not really upset.) I didn't realize you had children that young. Wish we could do something to cheer you up. When my mother-in-law had cancer our family bought her books by humorous authors which she really enjoyed reading. Be sure to share with your doctor how you feel so he/she can help you, too. Will keep you in my prayers.

[boninclyde]

I am ashamed to say I did not read the study info. My husband did and just told me to sign it. Hubby did explain it but I guess I was having brain fog and forgot. But he also agrees that I should have had a choice. Can't ask hubby now he doesn't have a long memory. Dr. was in and I was throwing questions at him while he was in there. I will get a copy of it at my next visit.

Today is my first day home alone since diagnosis in July. Sure is hard. I miss everyone so much specially my 5 year old. She did not want to go to school today and I feel like this bad guy by making her go. I did walk her in and stayed with her until she was comfortable. Extremely depressed today. This just doesn't seem fair. So many mixed emotions. I actually found myself get angry when I heard laughter today. How stupid. Not much good to talk to today so I'll go for now.

[cyn17]

Have you considered taking an antidepresent while you're going through this difficult time...especially when you go through chemo? My mother always made fun of antidepresents until she had breast cancer and emotionally she took a nose dive. She went on medication for the first year after her mastectomy and said it was a life saver. There's no shame in getting help during such an extreme life experience.