It would be nearly impossible

Carlatap

Help! I need some reassurance. I am triple negative, BRCA2+, have had cancer twice, went through a bilateral mastectomy and a terrible reconstruction experience b/c there was not enough blood flowing to the reconstruction sight so my skin pretty much died. It caused a lot of trauma to both breast areas, and it is still healing although the surgery was in August of 2010. As a result I have many many lumps-small, big, hard, and soft. My oncologist is very concerned. I believe they are all fat necrosis. I've had 2 biopsis since the surgery and they have come back benign-YEAH!  Well, this last appt, my onc sends me to get an ultra sound b/c there have been some new ones pop up on the left side. I'm fine until after the ultra sound. Tthe tech says that the radioligist wants me to come back on Tuesday so they can asperate (suck out) the liquid of the soft feeling bumps that were found. If the fluid is clear, good. If not, they will take biopsis of the fluid. ....the other news is that some wierd shaped lumps were found on the right side-ones that I cannot feel. These are making them concerned and they want to take biopsis.  My thinking is the following: these must be fat necrosis too. Otherwise this would have to be a third new primary since I had the triple neg tumor on my left breast in 09. I haven't had cancer in the rt breast since 02 and that was a zero stage,  dcis diagnosis.  And my goodness! I had a mastectomy last year! How can this be a recurrence? It would be impossible, right?  But I just can't help remembering how concerned my onc was in our last visit and how different the ultra sound tech was when she came back into the room to explain the need for the biopsi.  So, I can use some words of encouragement as I go back this Tuesday, and hear the results probably on Friday.  Thank you for listening to me ramble...

Carla

beau

HI Carla,

 I want to wish the best for you! I have not been in your shoes, but am having my own scary moment (had MRI on jaw just one year after diagnosis which raised question about mets vs. dental problem so now I am headed for a bone scan tomorrow to rule out/in/leave me with more tests and questions). In my own case, I take comfort in the "it would be nearly impossible" view because until we hear something to the contrary, the odds are with us that the docs are just being very careful; they don't want to miss "the nearly impossible".  

 I hope that it all turns out well - fingers crossed for you! in the meantime, make sure that you get some sleep and try to stay busy. I find that plus a little valium at night is helping me enjoy my day despite what feels like a sword dangling over me.  B

Best, Beau 

Carlatap

Thanks, Beau, for your wise way of looking at things. I will certainly be thinking and praying for you tomorrow as you go through your bone scan. I've gone through a few of those. I hope its all clear. Let's keep in touch as we go through our scans together.

Carla

dlb823

Carla, I'm so sorry you're going through this.  It sounds like you've had quite a rough time already with your reconstruction experience.  But it's good that your docs are being careful, which I think they all are after we've been dx'd once, and in your case twice.  Hopefully, all the lumps and bumps are nothing more than fat necrosis, scar tissue and cysts.  

I'll be thinking of you from California... sending strong postive vibes and prayers that everything will check out B9.   Deanna 

beau

HI Carla,

 I hope that things are going well for you today! I had my bone scan this morning and they were kind enough to call this evening to say that I am in the clear (for now, as we all know too well). Very relieved, to say the least. I am hoping that my good luck rubs off on you too.

I will be thinking of you as the week goes by and checking in to see how you are doing. I am hoping for clear fluid so that you don't have the anxiety of waiting for biopsies. Best, Beau 

GoldenEyes

Hi Carla

The Dr just wants to make sure,, because you have been through a lot already. My Oncologist is always on top of things.. The slightest change, pain I have he wants to have checked out. Its better to check everything out.. just in case..It could be nothing...Keeping you in my thoughts and prayers. Hang in there..try to relax.. have some wine...keep yourself busy until you get the results back...

Keep us posted !

Donna

Carlatap

Dear Beau, I'm so glad that everything is clear!! And how cool that they called you this evening to let you know and not make you wait. But now what? I know that I've been having a "challenging" time with lower back pain, and bone scans say "no cancer". So, I figure that its the lack of estrogen in my body along with arthritis. -all of which began after chemo. So, I try to swim, ride a stationary bike and walk. Sometimes it helps, sometimes it doesn't. I also try to do stretching exersizes in the morning to help me move easier.

Deanna and Donna, thank you so much for your encouragement, thoughts, and prayers. My sister is going to pick me up tomorrow morning and it will be a 2 hour procedure just getting to all the little nodules and lumps and examining them as they go along. My sister is also BRCA2+ and has gone through cancer as well. She had her bilateral mastectomy and reconstruction done in June of last year, and I had mine in August. So we both drove eachother to follow up appts and to have dressing changes and all that. I'm hoping that she can be in the room as they do all this poking around tomorrow. The more and more I think about this, the more I believe that these will be all fat necrosis of some sort. 

I will fill you in about how it goes tomorrow. Thanks again for your reasurrance and support.

Holding on to "the impossible" theory,

Carla

beau

HI Carla,

I am thinking of you and hoping for the best today! I am so glad (and sorry) that your sister is there with you (and has been down the same road). Best, Beau 

Carlatap

The craziest thing happened today. I got to the breast center for the biopsis and learned that they had received a message to cancel my appt. from my onc. office  and  I was confused. So, I guess what happened is that due to a CT  chest report that my onc had found from my last visit from my surgeon, he changed his mind about my needing an ultra sound, not knowing that I had already gotten it done. So in his  mind, he was calling to have the original ultra sound cancelled. But when the breast center explained that I should be getting biopsis done b/c of what was found at the ultra sound he changed his mind. So, I was rescheduled for Thursday morning at 9am.  So..... now I have to go again, and wait a whole weekend again before I hear results. Evidently my onc's office had left a couple of messages yesterday but they didn't show up on my cell phone until today. I had my phone by my side all afternoon and evening and I never heard it ring. (If you can help it, don't every get Sprint).  I'm not happy but there is nothing I can do. I'm just really glad that my sister has the time to bring me on Thursday too. But of course, it makes me wonder,  Is this a fortunate mistake so I am getting biopsis done and they are going to find something? Can an ultra sound find and identify masses that a CT scan can miss?  I guess I'll find out, won't I?

Thanks, Beau, for your note.

Hanging in there,

Carla

Carlatap

I just wanted to add, Happy Birthday, Beau!  I know its not until this Friday, but I hope you can really celebrate and have a good time.

Carla

beau

HI Carla,

 UGG! that is such a bummer - what a disapointment. You must be so frustrated and drained at the same time. I am so sorry that you have to wait yet again. That is by far the worst part. I hope that you can find something good to do to distract you from all this.  

Thank you for the Happy birthday wishes - I feel like it already started on Monday. I also had a 2 week wait between the call about the hot spot on the MRI and the bone scan. I had to work hard at keeping busy and staying positive. I just kept thinking: the odds are with me, it would be nearly impossible...hope the same holds true for you! Best, beau 

Carlatap

Today's biopsi appt. went well. I am a little sore, but not bad. There were 4 sights that were checked on. 2 sights were cysts like areas that had rather thick like fluid in it. It was sent for biopsi just to be safe, but the radiologist doubted very much that it would malignant. The other two sights were solid, and again did not look like malignant tissue but were going to be sent for biopsi as well. Now I wait until Monday afternoon or Tuesday morning for the call. You know what the crazy thing was? I was told by the ultrasound tech and the nurse that my case was the only case they had seen in this office where lumps ever had to be checked and biopsied after a mastectomy/reconstruction surgery had been done. I couldn't believe it. This breast cancer center has been around for years and years. I have been getting my mammos done here for ages. So, if the results are not what I am expecting,I will not be the only one who would be totally shocked. I will check in again when I get the results.

Hoping for the best,

Carla

beau

HI Carla.

 I am hoping that the weekend flies by for you and that all will be well come Monday (or Tuesday). It sounds promising! Beat, Beau 

Carlatap

I received one-half of the news. The cyst like areas full of fluid from my left side came back with "no sign of malignancy"!  -big sigh of relief. Tomorrow I will get the results of the biopsis from the solid masses on the right side. So, still waiting, but thankful and relieved by the news so far.

Carla 

MRDRN

Hi Carla,

I am sending good vibes for tomorrow!  Congrat's on the good news today!  Didn't we have the same Mutation on the other thread?  But yours is BRCA 2? Good Lord you have been through enough already!

MRDRN

beau

Hi Carla,

That is great news about the cysts - phew! Fingers crossed that your luck holds tomorrow for biopsies. It is definitely a good sign that the were B9 today. Best, Beau 

Carlatap

Thank you, MRDRN, for your vibes for tomorrow. Hopefully by this time tomorrow night my stomach will no longer be in knots.  Its just that being BRCA2+, some dumb little breast cells can be left behind after the mastectomy and then be vulnerable to cancer cells.  At the same time, I know this is highly unlikely, or "nearly impossible".  It is sooooo hard to wait.

Thank you MRDRN, and Beau, for your thoughts,

Carla 

Carlatap

I receieved great news yesterday! My biopsi came out negative of any malignancy!! I am so relieved and grateful. Thank you for all your thoughts and prayers. I really appreciated them.

Relieved and reassured,

Carla

GoldenEyes

Carlatap,

That is great news !  So happy for you !

Donna

beau

Hi Carla,



Way to go! Now you can relax and enjoy the holiday weekend. I am so happy it all went well. Best, Beau

Carlatap

Thank you, Donna and Beau, for your encouragement and kindness as I went through this latest piece of the cancer journey. I really appreciate being able to share with others who have gone through this up and down rollar coaster ride that we take.  Nobody else really understands the fear, the stress, the agony of finding out bad news or the overwhelming joy of finding out the good news. I mean....., I can't even understand it, so how can I help my husband and family understand it if I can't?  Thanks again, my friends, and have a wonderful weekend enjoying our nation's freedom.

Truly blessed,

Carla

spendygirl

Carla I've been following your story and just wanted to say congratulations!  You're right, no one understands like the ladies here.  Hope you have a wonderful worry-free weekend!! (edited for typo)

jan508

I've been having burning pain in my thigh the past couple of months.  Went to PCP today and start prednisone tomorrow. If that does not help then I'll probably going for nerve test and/or MRI. He thinks it's pinched nerve..Does a pinched nerve last months?

Very nervous this is mets. 

What does mets to bones feel like?  burning pain?  I'm scared to death!!!

Jan

beau

Hi Jan,

I am sorry that you are in such pain! I think that your initial diagnosis is very promising that it isn't mets: "it would be nearly impossible " as Carla has said (and so it was for her and for me)! That said, why is your onc prescribing prednisone? Is it too reduce possible inflammation and if so, does he think that you have sciatica pinched nerve? For what it is worth, nerve pain can last for years. I have a history of herniated disks in my neck (3 and counting), but I am used to it. It can be really awful for months and then finally switch to better, but it is never gone completely. Your mind just gets used to it and then your body also adjusts so that it becomes background noise, but it takes time. 

That said, have you called your onc? When my neck/jaw problem persisted, my onc ordered an MRi of my neck with contrast. Fortunately, that came back negative, but showed 3 herniated disks. He then sent me to a neurologist for further follow up to sort it out. The neurologist ordered another series of test......Still, at the end of the day, I understood that they were ordering the tests to try to figure out why I was having the problems.

Just be sure that you understand why you are being given the prednisone and what the next step will be and what that timing is.  One thing about this disease is that there are waves like this that will wash over us; we will worry and wait. Try to find joy, as best you can, in every day. i also recommend treating the psychological part of the disease as well as the physical. If you find that you are in a constant whirl of worry or can't sleep, please respect that is a serious problem and that you need medical help to manage it. For me, valium, which controls my muscle spasms for my disc problems, also enhances my mood ( I take a very modest dose, but it dose the trick ) For other, sleep aids or anti-depressants really help them stay more even keel. 

I think that you should also post your own question/thread as your post is buried a bit here. I am sure that there are others who would chime in with better/more advice as well.

Stay well, Beau 

I 

Carlatap

Thank you, Spendygirl, for your congratulations and positive thoughts. Hope you are doing well and that you have a great weekend.

Jan, I am sorry, but I cannot tell you what bone mets feels like, but what I have read on these boards it is more of a bone type pain not a burning pain. A burning pain sounds more like a sciatic nerve starting from your lower back. You may have a herniated or bulging disc which is touching a nerve and causing the burning  pain down to your thigh. This is just a guess on my part. I have a bulging disc located in my lower back, and it can cause quite a bit of pain that radiates to my hips and sometimes down my legs. It can be quite painful. I take naproxin (alieve)-2 in the am, and 1 before I go to bed. In the mid afternoon I'll take an excedrin that has ibuprofen and asprin in it. I also try to walk, and do stretching exercises. But I have had this for for more than a year now. Try not to let your mind go to the "mets"  level.  See what the prednisone does first. Hope it goes well,

Very blessed,

Carla

MRDRN

Carla...

Late congrat's but still congrat's ":))))  It pays to do the follow up for the reassurance, doesn't it?

Enjoy your day!