Will one week delay matter if it is IBC?

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anetnut
anetnut Member Posts: 49
edited June 2014 in IBC (Inflammatory Breast Cancer)

I am worried as some of those symptoms fit me. I have to move my daughter up to Michigan early Monday, so I'll be gone one week. I could have had an appt. for mammo June 2nd but picked June 10th as that is when I will be back from the trip. It is all arranged at work etc. and her boyfriend is down here with a one way flight for her graduation in 3 hours and he has to be back to work on June 1st late.Doc did my exam already and showed concerned about that side more than the other, but she knew I was going on this trip and couldn't get back to do it until the following week. She didn't say I needed to do it this week instead of next, just put ASAP on the request. If she had said I needed it NOW I would have made other arrangements...bought him ticket back home or something. 

 Will this one week delay make any difference if I do have IBC? I just thought I was worried before, now I am even more that I read the symptoms of IBC....I hope someone responds to this that knows just how fast this stuff is. 

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  • leisaparis
    leisaparis Member Posts: 587
    edited May 2010

    Hi there, I have IBC and even though it is fast growing, one week shouldn't make a lot of difference. However I wouldn't put it off longer than that. The quicker you get things going the better. Depending on stage, ER/PR + or -, HER2 + or -, etc...will give the oncologist the necessary information on how to treat you. That is if it is IBC. A biopsy is the only way to be 100% sure. Ask for a biopsy if you really think you may have IBC. Is your dr.a  breast dr.? You do want to be very aggressive with your treatment if you do end up having IBC. The faster your treatment gets started the better. I had 12 weeks chemo, then another 12 weeks of a stronger chemo, then surgery and now radiation ( 5 days a week for 6 1/2 weeks ) and a year of maintnance chemo. Here's to hoping you don't have IBC. Good luck and God bless. Come back and ask any questions you may have. There are many women on here that will help you through this. There is a great bunch of women on here. You can make it through this. Leisa

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  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited May 2010

    I agree that a one week delay would be okay, but as the previous post said I wouldn't put it off much longer.  It took 2 months for me to get a confirmation on my IBC diagnosis which seemed like forever to me. I started treament 16 days later. Now here I am 2 1/2 years later and I am NED (no evidence of desease)

     Sending love & prayers! NJ

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  • anetnut
    anetnut Member Posts: 49
    edited June 2010

    Thanks ladies for your replies. I just got back today from MI, the hardest thing I have done so far is to leave my daughter there. But I have a feeling I am in for more hard stuff. While there I spoke with the Cancer Centers of America people and they even went so far as to start to line up the hotel and were going to see about flight info if needed. I was going to drive up to the one in Zion, IL as that is the only one my Blue Cross is good at. There I would have had my initial workup and then drove home. But at the last minute the doc there decided I needed to go home and get the biopsies done here then go to them for treatment.

     I just got back this afternoon, had to change up my appt. time as I had been on the road since Wed. at 2am and wasn't going to make my 2pm appt. time today. Luckily I did make the one changed to 4:30pm, otherwise it would have been Monday. So after a 5 minute shower I ran out the door. They did the extensive mammo and ultrasound and I had the radiologist and tech staying after clinic hours to finish me up. She did drain some cysts on the right, said the fluid looked ok. She did a couple of core biopsies on the left as she didn't like that side and thought it looked like it was a malignancy. She didn't think it was IBC, but won't know any of this for sure until results come back.  Hopefully on Tuesday. Good news is she didn't find anything in the lymph nodes and believes it is not too deep in the breast. 

     So more than likely I am looking at chemo, surgery and then radiation. Now I just have to decide where to go for treatment. Anyone dealt with the cancercenters.com? They seem to treat the whole person, which is very important to me, as I want to fight it with all I can, but I would not have family around every time I go for treatment. I do like the fact that cancer is all they treat there. The woman on the phone with me said they are privately owned hospitals and when I expressed shock that they will fly you there she said if you want blueberries on your oatmeal they get it for you. I am close to the Fort Worth/Dallas area, so I have to start doing some research to see if they offer anything similar to that there. I have to miss as little work as I can get by with, but since they will fly me there and every other week I can take only 2 days off and be off the whole week perhaps it won't be too bad. I have to get the form for the federal medical leave thing and check into my disability that I have through work. I only have 58 hours of sick time built up that I can now use. 

     Thanks for any further input you can give me. I'm hoping to find someone that has gone to these centers for treatment. 

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  • happy05
    happy05 Member Posts: 3
    edited June 2010

    Since you are in the DFW area, I will share my thoughts on treatment.  My oncologist treats only breast cancer.  She is among many specialists in the DFW area whose practice is specifically geared toward breast cancer patients. Plus, I chose UT Southwestern Medical Center because it's a research and teaching hospital.  My team of doctors have all had years of experience treating IBC patients. If you contact UT Southwestern Medical Center and ask for the Simmons Cancer Center, you'll get the help you need. 

    I was diagnosed 5 years ago and attribute my good fortune as a survivor to the excellent care I received at UT Southwestern's Simmons Cancer Center.

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  • SeanE
    SeanE Member Posts: 107
    edited June 2010

    I am surprised that your Blue Cross insurance covers Cancer Centers of America - most insurances don't, for the simple reason that most of what they do there is complementary and/or alternative medicine.  They have been in trouble with the FDA in the past for making false claims about their treatments.  While they have a great reputation for good "customer service" - very attentive to patient emotional and spiritual needs - they are NOT the best place to treat your cancer. 

    Comprehensive cancer centers, a designation given for places that meet strict treatment requirements (you can find a list at ASCO website), are the best places to go.  For IBC, the best of the best is either MD Anderson, which has its own clinic dedicated to IBC, or Fox Chase in Philadelphia, which is in the process of starting its own IBC clinic, led by Dr. Cristofanelli, the best IBC oncologist, literally, in the world.

    Hope this helps,

    Sean E.

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  • anetnut
    anetnut Member Posts: 49
    edited June 2010

    Hmm, it is so hard to know what to do/where to go. I will look into these places also. I did not know about the false claims about the CTCA treatments. While the emotional and spiritual end of it is very important to me, if the physiological treatment of the cancer isn't as good as it can be, then I don't want to go there. More research needed I guess.

    MD Anderson is 6 hours drive for me so I am concerned about paying for the gas/hotel. Where as the CTCA are a trip to DFW airport 1.5 hours away. But....I don't know if they would reimburse me for my gas to the airport or parking my car there. All things to consider if I can't find a family member to drive me up there. I understand they can't foot the bill for everything, and I'm sure I pay for it in the end in the bills somehow. But I can't afford to spend any more out of pocket money than I have to. I live paycheck to paycheck when my work isn't being difficult and will let me actually work my days I'm scheduled. That is a whole other issue right now and if anyone knows how long they have to hold your job open for you let me know. I know it is 12 weeks I think with the FMLA form filled out, but is that accumilative work hours that total that time or how does it work? I need to also go check that out on some .gov site. 

     I will also check the one in Dallas. Fort Worth or Dallas is an hour and two hours from me. I just wish gas wasn't so high. Granbury which is 30 miles from me has an oncology treatment place now, but I'm not sure how good it is. Same goes for Weatherford, that is 45 min. and does have that option.  

     I would be happy at a place that treats only IBC if that is what my diagnosis is. Should find out tomorrow I hope. This waiting sucks even though I feel I know what they are going to say. I hope I am wrong.

    Do the test for the ER PR HER take longer on the biopsy or do I need to ask for those? I plan on asking for a print of the report since it is so hard to get stuff these days even on yourself without more paperwork. I want to keep my medical file at home updated anyhow. So I'm asking for printouts of everything they do. 

     Thanks for the input. I appreciate any and all opinions, websites etc. This is definitely a learning process. I still have to read up on what the ER PR HER is and what is best etc. I have not had time to do that yet. Keep any suggestions coming. Hugs and prayers to you all.  

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  • SeanE
    SeanE Member Posts: 107
    edited June 2010

    Anyone biopsying for breast cancer will automatically do the tests for ER/PR/HERNeu - the results of those tests will determine what chemo you would receive. 

    As to cost, MD Anderson does have housing for its patients, and I think in some instances will provide it for free, depending on your situation.  I didn't realize this (I just checked), but MD Anderson is the only comprehensive cancer center in the state of Texas.

    As far as time off work, FMLA would apply in your case, but FMLA just guarantees you 12 weeks of being able to keep your job when you come back - it doesn't force the company to pay you during that time.  However, for IBC, you might be able to qualify for disability, either through your company's insurance plan, or through Social Security.  IBC I believe is an almost automatic qualifier for that.

    If you did decide on MD Anderson, you might be interested to know that you can sign up to view all your records electronically, with a userid/password.  I have accessed all my wife's pathology reports, scans, blood tests, etc., online.

    Sincerely,

    Sean E.

    Kingwood, TX

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  • hymil
    hymil Member Posts: 826
    edited June 2010

    FIngers crossed as you wait for your results to come back. It gets so much better when you know exactly what you are dealing with.

    Er, Pr, HER tells you what hormones a tumour is sensitive to - Oestrogen, progesterone and the third is that one i can never remember, once they know which hormone helps a tumour to grow they can use appropriate treatmtnet to block it and make the body environment harder for the tumour to survive. Many tumours are Er+ and they give you tamoxifen, aromatase or other anti-oestrogen treament for them, which reduces the level of oestrogen circulating round your bloodstream so even if a cancer cell has got away, it won't be able to grow a new tumour. If it's not sensitive to Er, Pr or HER it's called triple negative, (TNS) and they are harder to treat, sadly they seem to be affecting much younger women too.  Keep us posted and good luck!

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  • anetnut
    anetnut Member Posts: 49
    edited June 2010

    Thanks for the info. I like the fact you can access records online with MD Anderson.

    I had called the ob/gyn to see about going ahead to set up the MRI and she happened to have my results in. Invasive lobular carcinoma. I don't know the ER P HER2 results yet of course. I don't know the stage, but assume invasive means a higher stage, not sure. The radiologist that was suppose to call me with results called a few minutes after I spoke with the ob/gyn. She said the MRI needs to be done and said it needs to be someone experienced and good to read them so she is setting it up in Dallas at a place she liked. So guess I'll get that in a few days. Lots of research and decisions to be made. They are also contacting one young woman who was treated at MD Anderson to find out her surgeon's name. Sean, who has your wife used and who did you like? I am leaning more towards MD Anderson now, but who knows. Still a lot to consider. 

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  • SeanE
    SeanE Member Posts: 107
    edited June 2010

    My wife had her surgery with Dr. Kuerer.  He literally wrote the book many breast surgeons use as their main reference tool.  My wife's friend also used him, and referred to him as the "Da Vinci" of breast surgery. You can google him to see some of his research and the book he wrote.

    Glad to hear you don't have IBC, though it still sucks (obviously) that you have breast cancer, in ANY form.  I had heard that invasive lobular is a bit unusual (invasive ductal is much more common), but neither is as aggressive as IBC, so silver lining there.

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  • Salmtvernon
    Salmtvernon Member Posts: 5
    edited July 2010

    I recognized my redness and wasn't diagnosed until 9 MONTHS later......don't let that happen, but one week shouldn't make a difference.  ALSO, IBC does NOT show up on a mammogram....don't waste you time /money on it.  Have an ultrasound, CTScan or MRI.......your doctor hasn't done the research you need if they are telling you a mammogram is to diagnose IBC.   Read all you can online about IBC...it's on several websites and you'll get more info there than from a doc.  ....unless your Doc is at a speciality clinic like Mayo, M.D. Anderson, etc.  ....and then they would know a mammogram isn't the tool for the diagnosis.

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited July 2010

    I'm not sure if all companies have to comply to short & long term disability.  My job was saved for 6 months on short term disability and I got paid 60% of my pay.  Since I was on chemo for 8 months, I went onto long term disability which required me to apply for Social Security Disability.  I've been off of work for 1 year and on SSDI for ibc & stage IV which are both automatic approvals.  Since I get SSDI, my company is not required to pay me 50% long term disability but they have kept me on medical insurance & life policy.  I'm still working to keep on long term because you need to be disabled for 2 years before qualifying for medicare.

    All my doctors are local in the bay area and I'm very happy with them.  MD Anderson does sound like a great choice for ibc breast cancer patients, however and you will get easy access to all your records.

    Terri

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