HealingWell
Search Close Search
☰

Masses from possibly from lupus

Support Forums
>
Lupus
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/15/2010 4:09 PM (GMT 0)
Hi, I am new new this site. I was reading some of the posts on ibc and had a few questions. I have SLE ( lupus)  about a year ago my husband found a small welted area on my right breast. It was not a lump it was flat reddish was about the size of a lima bean and simular in shape.  It continued to grow and at times the color would change sometimes looking like a bruise. I also developed a simular area on my back directly through from the other. I went to a breast center and had a mamogram that only showed 2 normal size lymph nodes. They schedules a needle biopsy. but then would not do it due to I have a shunt that runs down my chest. They didn't feel that there was a need for concern. I later went to another breast center that just looked at the previous ultra sounds, and mamograms and said it was nothing. So I decided I had enough and just gave up. I get so sick of doctors. I see so many rhumotologist, neurosergeons, neurologist, cardiologists, and my primary. Well the area continued to grow, and a third area came same side on my shoulder area. Deeper than the others though. My husband made me go to a new dr. So I finally had the one one my breast removed, and now I'm waiting for the results. The surgeon said it was not a tumor, but was a large unidentified mass. It was about the size of a baseball, but not the shape of one, more like a pancake. She said it could be an inflammatory mass due to the lupus. I can't find any pictures of inlammatory masses from lupus, but I have seen some pictures of IBC that look simular. If anyone has any ideas please help, I'm axiously waiting for my results.

confused   Thanks....Joe Baby

Posted 12/15/2010 6:20 PM (GMT 0)
wow-Im telling you theres some weird stuff goin on in our world today.No Joe ,I havent had anything big like that ,just other weird stuff.But I feel for you.Especially when they dont know whats goin on.Very scary.Theres was nothing else coming out or in this growth eh..?
Posted 12/15/2010 6:39 PM (GMT 0)
  Thanks for replying. No there's no drainage or anything. I have done a little research on a few things it could be, but I try not to search the web to much and scare myself to death. Well I go to dr tomorrow hopefully the results are in.

 

Posted 12/15/2010 7:52 PM (GMT 0)
...ya I know some of the stuff on the web can really freak ya out...and some of the shows on tv..med shows.Well I hope everything goes well at the docs..and let me know how it went.Ill pray for you tonite...:0)
Posted 12/15/2010 10:42 PM (GMT 0)
Thanks I will
Posted 12/16/2010 3:03 AM (GMT 0)
Hope everything goes well for you, tomorrow. I'll say some extra prayers for you, tonight.
Posted 12/16/2010 3:35 AM (GMT 0)
Hi Joe Baby,

 

I have about 6 or 7 of those masses under my skin on my thigh and lower back. The biggest is about the size of a quarter.   I had an ultrasound done on them and the results came back saying it was inflammatory tissue caused by Lupus.  So nothing serious. LOL (okaaaaaay).  Mine are very tender to press.  The one on my back is causing me problems lately.  Sending tapping sensastions through my back.  Not nice.  I guess I could always get them removed but that woud entail so much prep work with my meds that it's just not worth it.

 

I hope your appointment goes well!

 

Blessings

Posted 12/16/2010 10:08 PM (GMT 0)
hi Joe...How did your appt go?
Posted 12/17/2010 12:26 PM (GMT 0)
Went ok no infection and incision healing well. Unfortunately the results were not in yet so the waiting continues. I had myself so worked up. The not knowing Is terrible. I worry about my children and my husband havng to raise them alone. My kids need both of their parents. My oldest has some health issues and adhd and my youngest is blind. My middle daughter has some learning difficulties. They need us. I'm trying not to think the worst, but the more time waiting is more time for the wheels in my head to keep spining. Thank you for your concern. Its nice to talk with people who can relate. I will let you know as soon as I know something. Thanks again.
Posted 12/18/2010 12:27 AM (GMT 0)
...well...no news is good news I guess,but it really sucks not knowing!Im sure everything will be fine and you will be able to scream at your kids just like the rest of us!hehehehe-
Posted 12/21/2010 3:24 AM (GMT 0)
Hi well dr called me today not all the results are in but good news its not breast cancer. They have to do more extentive testing of the mass and the lymphnodes that are there. Bad news it could be lymphoma. They said there was a lot increased lymphocytes in the whole mass. But they also said a chance its the lupus
s. So I'm happy not bc trying to stay positive and enjoy the holidays with my family. Ill keep you posted. Have a wonderful holiday season
Posted 12/21/2010 4:29 AM (GMT 0)
yes,thats good news,Joe.One day at a time eh?Have a great holiday too...and eat lotsa!
Posted 12/23/2010 10:48 PM (GMT 0)
Hi well the results are in. Its non hodgkins lymphoma. As if all my otjer issues weren't enough. I'm going to wait until after Christmas to tell the kids. Theyre going to call me Monday to set up all the aptmts. I have to have the area on my back removed to check if its the same and a petscan. My husband is pist cuz I've been to several doctors about this for a year and a half and they all just look at me like I'm a hypercondroact and say its nothing. Well I just gotta keep truckn. Talk to you soon.......joe
Posted 1/3/2011 11:29 AM (GMT 0)
Hey joe! I am so sorry to read this! I will keep you in my thoughts and prayers! How are you doing and holding up? Have they started you on a treatment for this yet???
Posted 1/4/2011 12:10 PM (GMT 0)
Hi thanks for the prayers. I'm hanging in there. No treatment hasn't started yet. I had a pet scan last week and met with my oncologist yesterday. Confirmed all the areas I pointed out are all camcer. The original biopsy of the mass on my chest said it was a b cell low grade non hodgkins lymphoma, now they're saying the pet scan is showing a more advanced form and appears it could be in the bone marrow. I have a bone marrow biopsy scheduled for Friday my bday. Ooo hoo what a gift. I am just gona keep on fighting
I have a wonderful husband and 3 wonderful brats to live for. I just worry about the treatment will it cure me or kill me. That is the question. Ill keep you posted I do know they said if it is comfirmed tx will be chemo and bone marrow transplant. Scary stuff. Thanks for the ear.
Posted 1/4/2011 3:51 PM (GMT 0)
Are you near a good cancer center? A cancer center is helpful because they can run several test on the same visit and have some results that same day and usually have everything right there in the center for the test and treatments and support. The ones I have been to are very compassionate and helpful and they work very quickly.

Just want you to know you are in my prayers and thoughts.

J.P.
Posted 1/4/2011 8:50 PM (GMT 0)
Hi thanks ya josephine ford.. I think there good not sure this is all new to me..still trying to figur out how I'm gona pay for all this.....so much to think about.....jo
Posted 1/6/2011 2:55 AM (GMT 0)
I hate how you have to worry about how to pay for it. That's the last thing you should have to worry about!! And I have to say, I agree with your husband who is pissed that the doctors told you it was nothing for over a year. Are you a litigious person? Maybe your husband is? I am not a lawyer, but you might consider asking for a free consultation from a lawyer about this issue to see if it's worth pursuing.

I hope these ideas don't add extra stress to your world. If they do, please just ignore them.

Keep us posted on your progress!
Posted 1/6/2011 3:15 AM (GMT 0)
Hi no more stress. We had the same thoughts. When I had given up and stopped asking about it I told husband if I die you fight for wrongful death I will be callen all the drs that said it was nothing and let them know what they missed as soon as I get all the answers. But now what's done is done. It mite not have changed anything. I've asked and there's no way to know especially since non of the test are making sense. All my labs are good so far, but they took a lot more. Ill prob get lab test on Friday when I go for the biopsy. Going to bed nitety nite...
Jo
Posted 1/7/2011 5:46 AM (GMT 0)
I also want to apologize about my last post, I didn't want to add any stress, hope I didn't.

J.P.
Posted 1/7/2011 12:15 PM (GMT 0)
No need to apologize. You just said what we've thinking been thinking. It did not add any stress to me. No worries. Well today is the day. I'm a year older, and I get a bone marrow biopsy for my birthday. I'm very nervous. But when its over I'm going to the movies
So its all good. Positive thoughts bring positive results right. That's what everyone keeps saying. Well gotta go. Talk to you soon ....Jo
Posted 1/7/2011 5:13 PM (GMT 0)

Dear Jo,  I hope you and your husband pick a really light and easy or at the very least, FUN movie for your birthday.

Speaking of which, Happy Birthday, Sunshine!

Regarding the medical expenses.  That really will weigh on your heart and mind, I understand.  Our insurance is up at the end of the month, and well...  Now, some readers may not like this approach, but.

You've got alot on your plate, as do your husband and children.  Your responsibility is to get healthy.  If you have no insurance, you may be forced to go to a facility that takes indigent care.  We are fortunate here that all three of our majors, Cleveland Clinic, Univ. Hosp., and Metro, allow such patients.  They even have set-ups where, if you need to, you and or your family, can stay in lovely accomodations during treatments.  Okay, yada yada.  But it is something to fall back on in a worse case if doctors won't see you.

Here's the part that some won't like... If you have insurance but can't afford deductibles and co-pays and such.  Just keep going!  The rest will all take care of itself.  It really will.  Just keep on going to all your appointments.  There are so many services available to assist you.  Keep your faith, keep on going, it will all sort itself out.  You focus on getting healthy!  (easy to say, harder to do, but not impossible.  and when you feel overwhelmed by it, shout it out here and you'll feel that relief of, 'oh, it is okay.')

Hospital case workers or patient advocates, even a good disability attorney, can help find financial resources, help fill-out and submit paperwork, etc.  The key is, you don't have to take it all on yourself.  Nor your husband.  Use the resorces to do the dirty work while you get healthy. 

I have benefited from my husbands awesome indurance for the last 2.5 years.  Our portion is miniscule.  But, it is still in the 30K range.  The good news is that once my disability is approved, the money from that will help pay off the back owed.

Jo, just keep the faith.  Enjoy yoour birthday movies.  You are in our prayers here in our house as I sure in so many others.  And most importantly, thank you for sharing.  Your attitude and strength, frustration, fear and faith have been helping me and I'm sure, so many others.

Blessings,  ebteb

Posted 1/7/2011 11:14 PM (GMT 0)
Jo Baby! Happy Birthday! When you're ready, let us know what the test results show and what it all means.

Hope you have a good birthday, and that you are able to relax a bit!
Posted 1/7/2011 11:18 PM (GMT 0)
Hi guys thanks for everythng I'm still groggy from the ativan but that test sucked. Now the waiting starts again. I get the results thurs. I wil let you know after. Gona go rest now thanks again....jo
Posted 1/7/2011 11:22 PM (GMT 0)
hey Joe.sorry I havent wrote...but I ve been thinkin of you....sometimes just when ya think ya can handle all the crap..they pile more on.we dont know why This happens but Ill tell ya youre on my prayer list ..not only for healing ,but for strenght and wisdom.Cant imagine the weight you must be carrying.and ya know what?they are so rite about the finances..everyone has bills...and it will all work out.HAPPY BIRTHDAY TOO!!almost forgot!It cant be very happy,but lean on God cuz Hes always there.
✚ New Topic ✚ Reply
12