How long is too long to wait for treatment?

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SAR843
SAR843 Member Posts: 65
edited June 2014 in IBC (Inflammatory Breast Cancer)

Hi everyone - I was diagnosed with IBC on Feb 28th. I first noticed symptoms around Feb 4th (almost 6 weeks ago). I'm seeing two oncologists this week, and then need to decide where I want to go for treatment. I'm starting to get very nervous that things are moving too slowly. I had a CT of my chest/abdominal area last week that was clear. I'm still waiting for a bone and brain scan. The biopsy showed that the cancer is at least stage 3 and I'm concerned that all this waiting will mean by the time I begin chemo, it will have spread so much that it will be stage 4. Just wondering how long everyone waited to begin treatment. Was anyone as anxious as I am? What did you do to cope? Thanks!

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  • FightingforA
    FightingforA Member Posts: 62
    edited March 2012

    I was diagnosed Feb 27th, and start my first round of chemo tomorrow. I know how difficult the waiting game is, and am constantly wondering if this cancer has been spreading since my scans last week. I'm driving myself crazy! My BS tried to comfort me by telling me that cancer doesn't spread as quickly as an infectious disease, but I couldn't feel a tumor 5 months ago and now it's 6+cm and today my breast seems more swollen than ever! If you feel like your treatment team are dragging their feet, call them and tell them that you're anxious to get started with treatment and ask them why things are moving so slowly! Hang in there. The waiting is rough. (((hugs)))

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  • Kadia
    Kadia Member Posts: 314
    edited March 2012

    I was diagnosed with IDC on October 27, had a lumpectomy December 9, a mastectomy January 18, and started chemo February 27. All told, 4 months between diagnosis and chemo (longer if you count the month doing biopsies). Was it too long? I don't know...I sure hope not.

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  • ma111
    ma111 Member Posts: 1,376
    edited March 2012

    IBC grows so quickly try to decide where you want go quickly. My bone scan was also done after I started chemo. IBC starts at stage III.That is in part because they consider the skin involvement metastasis to the skin.  I had to wait to get on the surgery schedule for 4 weeks, then it was 2 weeks after that I had to wait to see an oncologist. started chemo 1 week after that. It was 3 weeks after I found the swelling in my armpit before I saw a surgeon. I didn't present with anything on or in the breast. MRI, mammogram were negative for tumor. Just had swollen nodes in the axillia.

    I wish you the best.

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  • Layla2525
    Layla2525 Member Posts: 827
    edited March 2012

    I was diagnos on 12/19/2011 and had surg 2/13/2012 so I would ask my dr and tell them I do not want to wait more than 6 wks or so. I had IDC right behind the nipple on one side and a piece broke off and headed up toward the lymph nodes but I got my surg right before it got there. Now there is a big dent in my bc breast but PS says she can fix it with the exchange. I feel like a dented car right  now and kind of look like a train wreck but its good to be alive and healthy. I opted for bmx with TE so I could avoid radiation and get a good cosmetic outcome. They put my main incisions very low so after exchange will be hard to see them. I got a 2 inch scar hiding in the fold of skin under my arm where 2 lymph nodes were taken. Hurray! they both came back negative and I breathed a sigh of relief and am getting away with only having to take Arimidx. The TE fills are my hardest part,the skin and muscle stretching but its only a few mths,with my Tyco#3 and Flexeril I hope I make it to a C. Good luck with all your surg,hope you get a good path report.

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  • SAR843
    SAR843 Member Posts: 65
    edited March 2012

    Thanks for posting everyone. I saw two oncologists this week and decided where I want to be treated. On Friday I'm having the bone scan (nervous for what it's going to show) and next week I have to have another biopsy, and the surgeon will put the port in at the same time. They have me down to start chemo on 3/27. That will be about 2 months since I first noticed symptoms, 1 month since I was diagnosed. It's going to be hard to wait almost two weeks, but at least the date is set. 

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  • Kicks
    Kicks Member Posts: 4,131
    edited March 2012

    There have been several who have given their time frame for other than Inflammatory Breast Cancer. The time frames for other types are different than for IBC. Time is of the essence of with IBC.



    My time frame was found enlarged lymph node under arm and saw my PA a week later (she was out of town and I didn't want to see a stranger). Saw her at 11 on Thurs and was at Radialogy at 1 for new mammo, sono and biopsies. Had results at 8 the next morning (Fri). Saw Surgeon on Mon, Rad Dr on Wed and Chemo Dr on Thurs. Tests/scans next week, port put in day before first A/C which was 17 days. 2 weeks after last A/C had surgery and 3 weeks later started 12 weekly Taxol. A week after last Taxol started 25 rads. A week into rads started Femara.

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  • CuterWCurves
    CuterWCurves Member Posts: 317
    edited March 2012

    It is a good idea Bonnie... If Sar is up for it I'm game.

    I have read this thread but not replied till this morning... I think from where i sit right now being so frustrated with waiting that part of me wants to yell that any wait is too long. The rest of me knows that a couple weeks isn't so bad. 

    For me... If the CT on Monday nets answers and it turns out to be BC I will be pushing to be starting chemo in April. If the CT fails to net answers I will be begging to get them to push the MRI forward. Right now that is a long arse way off. 

    Oh heck who am I kidding... I will be pushing for answers... Even if I have to push for an MRI of my arm to get one sooner then the tata's is scheduled.

    Sar I think right now they are moving pretty well. I am glad the date is set.

    Big hugs,
    Shell

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