I am crushed.

Arayasunshine69

I saw my surgeon today.  I was expecting to get my referral for reconstruction.  I know I can't have this done, until a year after radiation, but I thought he'd get the ball rolling.  Instead, I'm told I'm not a candidate for reconstruction because they think I have bone mets.  There is a spot on my pelvis of concern, and it's too small to biopsy.  They said they can't do reconstruction because surgery will weaken my immune system, blah, blah, blah! Cancer is a crap deal, I want out.  If only it were that easy....

jdootoo

Kellie,

I am so sorry you are going through this. Sending loving hugs your way...

One love, Jackie 

Leah_S

Kellie, I sure hope this isn't mets.

What test/scan showed the questionable area? What has your onc said about this? If it is mets I'm sure there won't be a "wait and see" with it.

Best of luck.

Leah

KerryMac

Kellie, I am so sorry you are dealing with this.

Have you had a recent scan?? Really, I second Leah above, you really need to get to the bottom of this. To just randomly say they think you have mets and then do nothing sounds totally unreasonable. Can you talk to your Onc??

Really hope you get some answers. 

apple

hope it isn't mets... just wait and see.. what a carpy way to receive more news.

BrandyB

I'm so sorry. Try to hold your head up and fix your gaze on the prize(remission) and take things one day (or one breath) at a time. The beginning, before you know your plan, is the WORST part of cancer(for me anyway.) I suggest you keep seeking opinions until you find someone who will outline a plan of attack. That way you can begin working toward the prize(remission). This time is so brutal. So brutal that it's impossible to explain to someone who hasn't been thru it. I felt like unzipping my skin and running away from my body. You just have to plow thru this time and you WILL come out the other side.



Hang in there-you can do it. Feel free to pm me anytime.



Brandy

Bugs

I'm sorry you are going through this, Kellie.  I echo what the others have said regarding getting to the bottom of this.  {{{hugs}}}

alex56

I have bone mets but my PS said as long as I'm stable a year out from completion of rads, I can start the reconstruction process.  My BS and Onc support this plan also.  I would lean on your medical team for more info.

kim40

{{{Hugs}}} Kellie.  I agree with everyone else, "thinking" that it is mets without a firm diagnosis, is not a fair conclusion.  You will have to get to the bottom of this to put your mind at ease. 

I hope you get answers soon.  Sending positive vibes your way...

jennyboog

I'm so sorry Kellie,  get to the bottom of this and keep us posted. 

americanpinay

(((Kellie)))

I'm sorry you're going through this. I agree, you should get to the bottom of this. Geez, for them to say they "think" you have bone mets.  My understanding is that only biopsies can tell for sure if it is cancer or not. Good luck.

jenn3

Crap.............this disease sucks!!!

I am so sorry you have to deal with this.  I echo what the others said, there is no way that "thinking" you have mets is acceptable.  Ugh!!!!  Get on the phone with your onc and demand an MRI and PET scan right away.

(((Hugs)))

Bugs

Alex56 has a great point!

pupfoster1

Hi Kellie,

Crap this disease just sucks.  I agree with the other ladies that you should get on top of this ASAP Monday morning.  How did they find the suspicious pelvic area?  If not a bone scan they should probably do that----but by all means check w/your onc to see what they suggest.  I'm sure if they are really suspecting mets they would want to get firm confirmation.

As far as recon, they didn't make me wait a whole year, as a matter of fact I only had to wait 6 months following rads.  I think it really depends on how you healed and blood work, etc.  If the mets thing gets cleared up (praying for you right now) you might want to consider a second opinion w/a different plastic surgeon.  I am almost 6 weeks out from my DIEP and am healing well at this point.

Keep us posted!

Sharon 

weesa

Kellie, your reaction, feeling crushed, is so appropriate. Hoping you get answers. I'm going thru a meltdown right now and it is the not knowing that is crushing me. Will be thinking of you.

1WonderWoman

Kellie: there is so much about what you said that bothers me.  First off, them *thinking* you have bone mets is not sufficient evidence to halt your plans for recon.   Secondly, I went through 5 cycles of TAC chemo with an infected TE which, conventional wisdom would say, should have killed me but instead I wound up hospitalized, the TE was removed and we are moving ahead with recon later this year.  Finally, if surgery does indeed weaken the immune system then, again, I should be dead.  I had surgery to get that TE removed less than 3 weeks after chemo hit #5 and then I had to go back for #6 a few weeks later.  

I would say you definitely should be seriously thinking about a second opinion.  That is a downright scary thing to tell anyone with not sufficient evidence to explain their "thoughts."   Don't let this get you down, either.   Keep truckin', talk to someone else and demand more information before anyone bursts your bubble.  Personally I think things are said in the medical community without having enough information.   I would caution you against having a reaction to this news until you gather more info and demand that before someone tells you they *think* something about your health that they tell you how they came to that conclusion so conclusively.

Best of luck to you-

Arayasunshine69

Hi Ladies, Thanks for the well thoughts.  I have CT and bone scans every 3 months.  The bone scans show that there is something in my pelvis, but they aren't sure 100% what it is.  Whatever it is, has shrunk since completing chemo, and radiation, etc.  I asked for a biopsy, but the onc said it's a difficult biopsy, and that it's too small to biopsy, so they will follow it.  UGH.  They do bone biopsies all the time on children.  Where do they think I've been the last 9 months...walking in the park???  What's a little bone biopsy compared to having a mastectomy, chemo and radiation?  I'm not satisfied, not knowing for sure what this is in my pelvis, it's driving me nuts!  Aside from joint pain, and not having my energy back 100%, I feel great. 

Yesterday morning, I went back to the surgeon that I had this conversation with, the day before and I took a good girlfriend with me.  The surgeon was very nice, had no issues talking to me again, understanding how overwhelmed I felt.  At this visit, he said they are just putting reconstruction on hold, until they know for certain, what they are dealing with.  They will continue to repeat scans.  He said they would not do reconstruction if the cancer has spread because of the Anestia (sp?) and weakened immune system.  Then I bought up how unproportioned I felt, and he said they could reduce the size of my good breast.  Then I asked, why the could do surgery to reduce breast size, but not do surgery to make another one?  Reducing breast size is less complicated, and less surgery time, less recovery, etc. He explained that there are only so many reconstruction surgeons, and they do all reconstruction, not just breast, and that there is a long waiting list. (Especially for the 2 I requested) So then I asked him, well, why can't I go on the list now, and then in a year, I won't have to wait another year.  He replied, they won't refer me until they know what they are dealing with.  He told me to be positive, and that my reconstruction is just on hold for now.  

I guess I feel a little bit better about that...but I still want to know what this f'n spot is on my pelvis!  I keep fighting with my doctors that It's arthritis.  I am trying to live life in the now, each day to its fullest, best potential.  I started going back to the gym.  I'm moving very slowly, I feel like I have a hard road ahead.  I also follow WW, but the weight is very slowly coming off, and I'm getting frustrated.  I tell myself it's all the drugs and that I just have to stick with it.  

Some days it's hard to feel optimistic, all the time.

Cheers! 

  

curecx2011

My prayers are with you...I hope it all comes back clear. This disease sucks!!! I am sending you lots of hugs and well wishes.

Elizabeth1959

Kellie

I agree with you that your name should be added to the reconstruction list especially since there is a 2 year wait.  It's funny that we should have the strength to go through surgery, chemo and rads and then lack the immune system to withstand a surgery to help restore our bodies.  I don't think your oncologist is being kind.  I switched oncologist because the first one gave me such a gloomy prognosis.  My current oncologist simply said that if it comes back, then for me, the risk is 100%.  He indicated that he thought there were also many reasons to be optomistic.  He remains positive and understanding.  It probably doesn't change a thing in terms of the future, but at least it makes my current life easier to live.

I too am sending you lots of hugs.

BrandyB

Are you Americans reading this?? Waiting list?? I could have surgery any day I choose. Why are we changing things? Sorry to hijack your thread. I wish you only the best. Sincerely, only the best.



Brandy

elmcity69

I'm with the other gals, you deserve to get your name on that reconstruction list, and the onc should support that. We're standing behind you the whole way, and you're in my prayers.

 hugs,

Janyce

CynthiainChicago

Don't know if a little hopeful energy south of the border can lift you back up just a bit. Hope you can hang onto hope since mets aren't "proven." Also hope some other sisters can give you some comfort you on reconstruction issue. Best,