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Posted 2/19/2006 12:17 AM (GMT 0)
I went in yesterday for a screening breast u/s ordered by my doctor.  DH got off work early to go w/and he met me at the clinic.  They took me back and the tech asked if we were just re-checking the right breast (the one w/the fibro in it) and I told her that I was there for a screening.  She looked puzzled and said that they don't do SBU/S's.  Ummm...okay.  So she asks me to wait while she goes and talks to the doctor.  Before she had left she said that if I had a lump she could look at it, but couldn't do a screen.  While she was gone DH and I discussed the sheer stupidity of the whole situation and I began to get angry.  about 10 mins. later she comes in and basically reviews my history w/me and tells me that I was told I didn't need to be seen again for a year (which was news to me, but whatever).  Then I explain how my doctor had ordered the yearly screening as part of my breast health plan given my history and my family's history.  The tech apologized and said that my doctor had sent people down for the same thing in the past, but that they (and NO ONE else in our ENTIRE town) does screening breast u/s's.  I asked her if anyone had told Dr. R as she wouldn't knowingly waste people's time.  I couldn't fault the tech, of course, however I was quite upset.  Not just for me but for all the women in our town like me--women who can't have mammo's due to their tissue being too dense, have a family history of bc, and are told "sorry Charlie--just keep doing the SBE and maybe you'll get lucky by catching the lump so that THEN we can u/s it!"  I left there feeling quite dejected and angry and wondering how women w/actual cancer deal w/all the medical BS.  Our town is not that small (over 60,000 people) and the majority are women, yet the radiologists all work out of one group essentially (rotating between medical centers and hospitals) so if they don't want to do breast screening u/s's, then too bad.  It's just not right.  Plus, we only have 1 breast surgeon, and honestly he frightens me as he's the one that got it wrong the first time.  So I don't feel I can trust him. 

When we got home DH and I looked at Breast Health Centers in our state and have found a few that look promising.  I guess I'm going to have to travel to even get my breasts screened which sucks because I suffer from panic attacks so traveling and I don't mix.  But what about all the other women in my town?  Are they just supposed to wait until it happens to them?  I mean, I didn't feel the grape+ sized lump in my breast and neither did my doctor (nor did the surgeon's wife who was his nurse and who was a supposed "expert") so whose to say anyone else would feel their lump?  I wonder if I write a letter to our local alternative newspaper (our "real" newspaper is practically owned by the hospital) if that would make a difference?  Or is this not uncommon?  Do most places offer screening breast u/s's or don't they?

For now I talked to my doctor's nurse who was quite upset.  Seems no one ever bothered to tell them that their clinic doesn't do SBU/S and she didn't understand why they don't, and/or why they hadn't told them.  Not sure what my doctor will come up w/but I'll keep you posted.  At this moment I am angry for all the women in my town.

~Laura~

Posted 2/19/2006 12:27 AM (GMT 0)
I don't blame you for getting upset. You would think a city of that size would have facilities for most medical tests. Our little hospital in a town of less than 20,000 can do a breast sonogram. It is a branch of the hospital in Fort Worth which is only 20 miles from hospital to hospital. Just goes to show you have to fight for every little bit you need in breast care situations. Hugs MK
Posted 2/19/2006 2:35 AM (GMT 0)
I have but one comment. Get out of town! They tried to kill me more than once here. I drive, or am driven to be more accurate, 3 hours away to see my beloved breast surgeon. They do a mammagram and if anything seems at all unclear they do the sonagram. It is very unfortunate, but to be treated well, we usually have to travel to where we can get the best. Once a year, she does a PET scan. But then, I have a long history. I have learned how to stand up to the medical establishment. At least that is one thing that has come from cancer. I a stronger. or bi_ _ _ er. Depending on ones viewpoint. Hugs, Di nono
Posted 2/19/2006 3:25 AM (GMT 0)
Hi:

 

I have dense breast tissue too.  my 2.5 cm lump was felt by my husband but the doc in town said wait six months after a normal mammogram.  I went to NYC and got diagnosed that day!  Now I go for a mammo every six months and have an annual MRI, which has a lot of false positives.  I guess they'd do a U/S if they find something.  I have trouble with my insurance and the breast center in NYC--the surgeon participates but the center doesn't.  They want me to go around me for the mammo.  I'm still working on that.  I get scared I won't find a lump, too.  I didn't even feel the first one and now that breast is relatively ignored by DH, it has a dent, and who knows if he'd feel a lump anyway because of the scar tissue.  It bugs me.

Posted 2/19/2006 4:38 PM (GMT 0)
Not only should you get out of town, but you need to take the fastest stagecoach to do it. My doctors and hospital are down in Dallas. I drive down whenever I need them. It is inexcusable for a doctor to refer you for additional testing and you are told they can't do it.


As far as the "let's wait and see" attitude, tell them what to kiss and when. I was told my mammo was fine, come back in a year. I still have the July letter telling me that. In Dec, it was too late and there was lymph node involvement, the start of a very painful journey of two years.

Tell your dr he ought to make arrangements for doing the sonograms and he could certainly increase his income. My breast surgeon has one in his office.

Always remember that if it doesn't feel right, it ain't. Do what you have to do to be comfortable with yourself. Do NOT be afraid to attack the windmills if that's what must be done.

Hugs, Jo-Ann
Posted 2/19/2006 4:53 PM (GMT 0)
Laura: I know how you feel. I live in the Capitol City of Mo. It is a city w/ a small town mentality! We have 2 hospitals here that fight each other constantly. They are constantly rebuilding. They have formed these "medical groups" and any physician that attempts to be on his/her own is literally either forced to join one of the groups or leaves town. My surgeon finally got fed up w/ all of the bs and started a "free clinic" (other than the health dept) for women to come and get mammos, us, etc. No appt needed. I am so proud of her.

You asked what you can do. Sure, write that letter. It can't hurt. Get a group of women together and begin a campaign. Use your local ACS. Use your physician. Use anything and anyone that can help you get the word out. We started w/ a group of 6, five yrs ago to start a bc house. We have finally raised enough money to lease and remodel a house. We are hoping to open Mother's Day weekend. We have community involvment. We are nonprofit (which is a real headache w/ paperwork). But we are going to have a place where women from all over central Mo can come and obtain any and all info needed for their bc journey. They will be assigned a mentor to be w/ them. There will be counseling provided for them as well as their spouse and children. It took one step at a time. We lost members because they were threatened by the hospitals that they would lose their job if they continued to help this project.

I agree w/ the others. Get out of town. If you don't trust this surgeon, then follow your gut feeling.

Deb

Posted 2/19/2006 5:09 PM (GMT 0)

Laura,

I can only echo "Get out of town!!"  It is so hard to believe that in this age of knowledge, technology, etc that we still have to fight for the right of brest cancer knowledge and good health.  Keep fighting and find a medical staff that will help you.  Write all the letters you can to as many people as you can.  Even the AMA needs to get a letter.  You represent at least 16 people when you write one letter.  Ask others to get involved and help you.

Best of luck to you and many prayers,

Candy 

Posted 2/23/2006 4:46 PM (GMT 0)
Debbi, that is so wonderful what you are doing! I would love to do something like that as well. I still haven't heard anything from my doctor so my guess is they have decided not to screen me. I am going to call today and see if they have come up w/a way to get my the SBU/S or if I need to travel. I plan to keep my appt. w/the surgeon just to hear what he has to say. Who knows--maybe he can do the screening himself. But he's going to have to do a lot of proving to me that he's on my side now and "gets it." Not just doing what he's been told to do.

It's tough living in a town where the hospital is only concerned about making money and not about their staff or their patients, not to mention having to fight to get good healthcare. :o(

~Laura~
Posted 2/23/2006 11:40 PM (GMT 0)
I don't mind them making money -- if they did not they probably could not stay in practice, but d _ _ _ it! Have a few feelings for me and others like us. I get so tired of the negative I could scream.

Judy
Posted 2/24/2006 3:46 AM (GMT 0)
I don't mind the hospital making money either, but ours is apparently really bad. They had an article in the other newspaper (written by a patient who "interviewed" the staff while there) about how low the moral is, how the hospital has cut hours and people to save money but yet doubles up the patient loads on all the nurses, and recently the hospital was caught dumping medical waste in the local landfill (their second offense). It's a mess. :o(

My doctor called me today and is hoping the surgeon will do a breast screening for me. She's not sure why the clinic/radiologists don't do them except to assume that it may be a legal thing. Hard to explain but it could be why--who knows. Either way she thinks I should do genetic counseling based on my mother's side of the family and all the cancer they've had. I'm going to look into it--find out costs, if our insurance will cover it, etc.--and we'll see. Would you guys do it? Have any of you done it and if so, was it expensive? I'm going to call my aunt tomorrow and find out if she's been tested and/or if she'd be up for it. Plus I need to find out how old my grandmother was when she was diagnosed w/lymphoma and when she passed from it. Same for my grandfather. I know my grandmother was young, maybe like early to mid 40's it seemed, but we'll see. I don't think lymphoma is genetic but it would probably be a higher push to have me tested.
Posted 2/24/2006 4:23 PM (GMT 0)
Laura, there is a group with a forum much like this one that talks about genetic testing. (Several of our members have had it done.) The lady who runs F.O.R.C.E. is a member of our group, altho we see very little of her because of her activities with her group.

http://www.facingourrisk.org/

Meanwhile hopefully some of the ladies here can also help. Altho my daughter was also diagnosed, we have not done any genetic counseling. I did attend a meeting about it and learned that other cancers in other family members also enter into the possibilities of having the gene. Not all cancers, just certain kinds.

I am glad you have a doctor who is taking you seriously and helping you. That is a great step in the right direction.

Hugs MK

Posted 2/27/2006 12:59 AM (GMT 0)

MK,

Thanks so much for the link to FORCE.  I have joined up and posted a question for them.  I found a genetic counselor in my city and emailed her.  Hopefully she'll email me back this week.  Part of me is hesitant to do it because I don't want to obsess about it.  But then part of me is already obsessing about certain things so I figure this may help me relax (if it's negative), or give my doctors a reason to be more diligent (if it's positive).  It seems like many who test positive for it end up doing prophylactic mastectomies and oopher's.  I'd like to think I wouldn't let the fear get to me that way, but then I don't know.  :o/  Definitely food for thought.

~Laura~ 

Posted 2/27/2006 1:15 AM (GMT 0)
Hi Laura,
I live in Canada, so I cant help you with any info about costs and such, but I did have the testing done. There is a strong history of BC in my family, and I figured that I had the gene, so when the preliminary results came back as positive, it didnt really surprise me. I am strongly thinking of have a bilateral mast. done, with an eye of having an oopher in the future.
This probably didnt help much, but it may give you a different perspective.
Good Luck

Chantry
Posted 2/28/2006 7:43 AM (GMT 0)
Hi Chantry,

I hope I didn't come across as saying that women who had prophylactic surgeries let the fear get to them. I reread what I wrote and thought it might have sounded that way. Instead I just meant that I was hoping for me I would be okay w/just being watched--and then if I got cancer be ready for a mastectomy (or what have you). It's such a personal thing and I think that so long as you do what feels right to you, that's all that matters. I have no idea how I will handle it if it comes back as positive. Probably not that shocked, really. For so long I have figured that I will get cancer one day in some form. At least if it comes back positive for the gene I'll (hopefully) have more diligent testing. Maybe then I won't feel like I'm banging my head against the wall as much, though I think the system needs to change for the rest of the women in our town.

~Laura~
Posted 2/28/2006 7:33 PM (GMT 0)
Laura,
No offense taken! Each person is different in how they react and deal with a situation. I'm not totally FOR having the mast - I (ideallly) would have liked to have another child and be able to breast feed him/her, but due to some recent news from this website, I am not so sure that getting pregnant again would be a good idea. especially since my cancer developed while I was pregnant the first time. It is just so hard to let go of not being able to have any more children. But I need to do what is best for my little girl - and a mast will decrease my chance of recurrance.

I do hope that you continue to advocate for yourself, and that the idi*ts in your town come to their senses. Hopefully you will never need to go any further than the occasional screening. I wish you all the best!!

Chantry
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