It seems to just keep getting worse. (or, am I over reacting??)

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rosiesgirl
rosiesgirl Member Posts: 89

Since my diagnosis 10 days ago it just seems to be getting worse. I am pretty easy-going and was feeling let's just get the results of everything back and get the plan together an just get going. Now as I go for more and more testing my spirits are getting lower and lower. I had my MRI, Lymph biopsy, CAT scan and will have MUGA, Bone Scan and medi-port install next week. I will also meet with the oncologist for the first time on Tuesday. Yesterday I went online and pulled up my MRI report just before the family was heading out to cut down our Christmas tree. My biopsy stated I had a 3.3 cm invasive tumor. MRI report says the following: "the previously biopsied mass in the upper outer quadrant measures 6.5 by 4.1 by 2.8 cm. Smaller satellite lesions are also suspect in the anteriormost region. I total this tumor complex extends 7.7 cm. Left axillary lymph nodes are mildly prominent in size but also have increased kinetic activity when compared to those on the right. These findings are suggestive of metastatic disease." Ugh.....

Of course I have not yet reviewed this with any Dr. It seems like it may be growing really fast. (this my HIGH Ki67#). I am also going to University of Michigan on 12/8. They have an IBC treatment center. I am ready to travel to Texas if need be as well. I just want to stop crying. Don't know what to think. I just want to get answers and get on with my treatment yet I know that the Drs are doing everything to get a clear picture.

Just venting....(again!)

Comments

  • Akevia
    Akevia Member Posts: 209
    edited November 2014

    We understand vent if that's what's needed Hun! My biggest axillary lymp node was about 4 cm after chemo it shrink to about 1 cm. So I know how scary it can be and IBC symptoms only get worst but you start treatment next week correct? You need to be starting chemo right after your port is in place. Goodluck, I will keep you in my prayers!

  • rosiesgirl
    rosiesgirl Member Posts: 89
    edited November 2014

    Thanks, Akevia! It is such a blessing to come and vent with those who get it. I am getting my port next week, but I want to wait to start treatment until I get a second opinion at Michigan. I have a treatment plan from BS here in my hometown and have my first oncology appt on Tuesday. The said they would start chemo/herceptin/perjeta asap, but it will only be a couple days from getting the mediport until the consult at Michigan. I will spend all day on 12/8 at U of M and they said when I am done I will have a complete second opinion/treatment plan. I think if it differs from what I am hearing here from local Drs, I will probably go with the Drs at U of M. They have an IBC center their and I would feel better being under there care.

    Thanks so much for your support! I know you walk my path and can relate. You are in my prayers as well!

  • BrooksideVT
    BrooksideVT Member Posts: 2,211
    edited November 2014

    Rosiesgirl, the MRI is far more sensitive than the mammogram, and its findings reflect a different point of view, so to speak, not tumor growth.  The reason they want the MRI is for a better look.  That's all.  If you were to repeat the mammogram now, it would probably show exactly the same picture, and same size tumor, as it did a little while ago.  And yes, we all worry ourselves nuts until we get the treatment plan in place, so worry away, but try for a relaxed worry. 

  • AmyQ
    AmyQ Member Posts: 2,182
    edited November 2014

    Sending comforting hugs and prayers to you Rosiesgirl. We've been in your shoes and totally "get it" so vent away, cry if you feel like crying and punch the stuffing out of the nearest pillow. You get my point; do what you have to in order to get through these next several weeks. Keep us posted on how you're doing and come back and vent some more!

    Amy

  • Morwenna
    Morwenna Member Posts: 1,063
    edited November 2014

    I always feel the early period after initial diagnosis of breast cancer is like watching a train crash or a motorway pile-up ..... or perhaps BEING in one.

    I was the same. It started out looking like a speed bump, but then the full picture gradually emerged and seemed to be a parade of bad news.

    You will feel better once treatment has started, I'm sure. And looking back 2 years on my early days, things are gradually settling back down to speed bump dimensions once again.

    You WILL get through this, and you will be ok.

  • Akevia
    Akevia Member Posts: 209
    edited November 2014

    Rosiesgirl sounds like a good plan and yes it would be best to go with the Doc's at the IBC center especially if their opinion is different!!

  • labelle
    labelle Member Posts: 721
    edited November 2014

    Pretty much what Brookside said. When I actually had my surgery, the final pathology report showed my tumor to be closer in size to the original needle biopsy estimate than the MRI's estimate in tumor size (larger). That is really what you get from both MRI and needle biopsy, an estimate in size. And I did nothing (no chemo, etc) to decrease the tumor prior to surgery (other than wishing/hoping) the size was what is was all along.

    Over reacting? I don't think it is really possible when diagnosed w BC. You feel what you feel and it's okay. Venting is one way of coping, so whatever works for you..........................

  • rosiesgirl
    rosiesgirl Member Posts: 89
    edited November 2014

    Thanks so much for all the support. You all keep pulling me back from the edge. Deep breaths....deep breaths (and several beaten up pillows...)

  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited November 2014

    I think there are two things happening--one is the slow motion diagnosis which is slowly rolling out with all its contradictions. The other is the slow motion acceptance of our diagnosis. Some days we're deep in denial, other times we're deep in despair.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited November 2014

    Roseiesgirl, I think waiting for the consult with UM makes a lot of sense but I know how hard it is to get all the bits of info you need to make some sense of what's going on. It seems as though you get one answer but discover five more questions, doesn't it? That's part of what makes this SO hard.

    Bear in mind that tumor sizes appear different by mode of imaging; MRI sizing is different from ultrasound is different from mammogram is different from palpation. Plus the MRI is probably, as stated above, showing more detail that's been there all along, not NEW areas of concern.

    Try to take some deep breaths and maybe distract your over-busy mind by coming up with some self-talk/affirmations that will support your healing and help relieve the very natural panic/depression that threatens to ambush us every time we let our guard down. Every now and then I give 'my' cancer cells a long, stern lecture about their future in my body. It feels good to do so and can't hurt. If nothing else, it bores them to death. :) Hang in there. We're all here for you.

    Akevia I'm glad you've responded so well to your chemo. I hope the tamoxifen is doing even more for you.

  • Akevia
    Akevia Member Posts: 209
    edited November 2014

    Hopeful82014- thanks, I hope the tamoxifen works for me as well.

  • bearcub
    bearcub Member Posts: 485
    edited December 2014

    Rosiegirl when I was DX back in May 2012, I felt like you, 2 weeks in I had a major meltdown and cried for several hrs. Thrown into my treatment plan became my full time job for a while...lived, breathed, and basically my life was controlled by Breast cancer. Things will get better and the further you go along you will relax. These boards were my lifeline, I got into a Sept chemo 2012 group ( I suggest you find a group that starts when you start chemo) and we helped each other through. A year out many of us met up in Las Vegas for a girls weekend, it was wonderful to meet up with ladies from all over the states and Canada...we still have a private FB group and we help each other out and keep up on each other's lives. Last August I completed a 1/2 mountain marathon for the first time in my life...you will get through this crummy time, it's hard but you will come through this...good luck on your treatment...and take one day at a time..

  • Chevyboy
    Chevyboy Member Posts: 10,786
    edited December 2014

    Hi Rosiesgirl! Please don't worry! Just take one day at a time.... You are just beginning out on this scary diagnosis, and we've all been there! You said you were having a port put in? So you are getting chemo before the surgery? I have heart of a lot of women doing that

    Sounds like your "team" is covering all the basis.... trying to heal you as much as they can before the actual surgery?

    Make sure you write down all of your questions, and then the answers, as you ask these guys! Keep all of your records and reports... and your scans. Your Doc's should give you copies..... So many women.... even my Doctor.... Have had this type of treatment before their surgery! So feel confident that you are in good hands....

    And sometimes talking to family isn't very helpful.... they are afraid, and they don't understand either.... You can vent here anytime.... If we can't help you by answering your questions, maybe we can make you smile!


  • Chevyboy
    Chevyboy Member Posts: 10,786
    edited December 2014
  • rosiesgirl
    rosiesgirl Member Posts: 89
    edited December 2014

    Thanks for so much support and great advice. Had my first bit of good news! CAT scan was clear! YAY! Happy dance!! I was in a great mood all night. I was so worried that it had already taken up residence in my lungs liver etc....NOPE. Not this time cancer! I had my bone scan yesterday and first oncology appt today. My appt at U of M is 12/8 and my PC Dr has faxed them everything and anything. I have a great team and I am feeling pretty good going into the appt this morning. Thanks to all!

  • Chevyboy
    Chevyboy Member Posts: 10,786
    edited December 2014

    Now you can relax! Just don't worry about anything.... we are ALways afraid of what MIGHT happen.... It's okay! Take good care!

  • bride
    bride Member Posts: 382
    edited December 2014

    Rosiegirl,

    It is pretty common for your US and MRI to give different results. My US indicated that I had one cancerous lymph node. My MRI showed, to use the highly medical jargon I was told, two additional nodes that looked "shadowy." And, according to my MRI, one mass had grown 1.3cms in 12 days. Since the size of the two masses that were biopsed also changed in size within the same two hour appointment, I just figured the issue was with the technology and not because I was being devoured by IBC. No, I didn't come to this conclusion rationally -- disassociation does have some good aspects. :)

    What I learned (eventually) was to focus on more useful information. Finding out that I am triple positive gave me much more useful info than possibly having a couple of shadowy nodes. Look, you're doing everything right. All I can suggest is what the wise women here told me. It is hard enough to wrap your mind around the idea that you have cancer, grab a calm friend to go with you. She can take notes, steady you, and help mediate things with your MO. And get a big file and get copies of every test result, exam result, and any piece of paper that concerns you. And hang onto it. I also got a small notebook and wrote down every question I had. Although all of that sounds like a depressing hassle, for me at least, it gave me both a sense of control and allowed me to be more proactive than I might otherwise have been.

    This last year has kicked my ass. But I also have NED. You're on a bumpy road but please remember two things: you can handle this and IBC is survivable. And this board will be here to help if you want it.

    Best wishes,

    bride

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