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Sarcoid

Survivor73
Posts: 135
Joined: Oct 2009

Hi All. Got some good news on Monday...my sentinal node biopsy showed no spread to the lymph nodes...which is great news.

But, this was strange to me since the reason I was diagnosed was due to an enlarged lymph node...it lead to an ultrasound, then biopsy...etc.

So, I asked what about the lymph node to my surgeon. He said it was likely some fungal infection or maybe sardoid or TB...have you ever been told you have anything like that? I said no...he said not to worry about it....

So of course being proactive as always...I asked my GP about it. She said we could do a TB skin test & then get a chest x-ray...we should have a baseline anyway prior to treatment, etc.

So that was done on Tuesday...GP called today to say there is a "fullness" in the right side of my lungs...it could be sarcoid...this would explain the lungs and lymph node imflamation...just when I thought I couldn't hear anything bad...

I'm waiting on my biopsy of my thyroid lymph node (thyroid ca in 2009 - possible reoccurance) done last week...is this related too??

I don't know anymore...on one side, I'm glad that it was there or I would never have found the breast cancer...it didn't show on the mammo...but to then find out it's not even related??

Anyone out there with Sarcoid? I here there are links to cancer...any info would be appreciated...not sure what to think anymore...can't possibly take anymore...

Have to now go for blood work then CT scan of my lungs to see what it is...

What is next? Is this the 3rd strike???

I'm still waiting to see if I need chemo or just rads for the bc...

Ok, I've vented enough...just can't understand...and I'm extremely frustrated, mad...exhausted...I don't know anymore...

Hope all is well...

Victoria1566
Posts: 23
Joined: Oct 2009

I’m sorry you are faced with so much suffering and uncertainty. I don’t have experience with the conditions you mentioned….just the breast cancer. Tomorrow, I turn 50 and I’m happy to be alive to see it. Recently, I was afraid the cancer was back and it was terrifying. When the doctor gave me the all clear, I was relieved but in the back of my mind I thought, “OK, I have more time. Now, I can start planning this year’s vacation with my kids.” I still have trouble planning beyond a few months. We can’t let the fear of future cancer darken the moments we have today. It’s a daily battle with that dark cloud, but we have to keep fighting it and rejoice in our victories….like another birthday or an abnormality on a test result that isn’t cancer. Good Luck

Katmy
Posts: 93
Joined: Mar 2011

I was found to have sarcoidosis during my breast cancer studies. I had a bronchoscopy done. I don't know what it all means either except that people live with Sarcoid and it can be manageable. I go back to the Pulmonologist in 3 months to see if the lymph nodes around my lungs have shrunk or enlarged.

I am learning that I may have irritable bowel syndrome as well after a tough first round of chemo.

The other health issues seem to come forward in this cancer therapy.

Hope you are well. I am off to the clinic, again.

Aortus's picture
Aortus
Posts: 967
Joined: Jan 2009

I have a friend here at the university, in her mid 30s (or so I would guess) who has been under treatment for sarcoidosis since summer 2009. It hasn't been easy, or fun, but she is definitely hacking it. She is also a good, caring person who I suspect would be more than willing to talk with others who might be walking the same road. I think I can put either of you in touch with her if you are interested.

Joe

NJMom10
Posts: 176
Joined: Oct 2010

I was diagnosed in 1988 with sarcoid. It presented in the lungs first. When it is "active" it causes inflammation somewhere in the body. When active it can make you extremely tired and weak...so much so that you can barely get up from sitting! My inflammation was in the joints...my ankles specifically...they looked like I had a severe case of sunburn there. I was treated with steroids and within a few weeks I was fine. Sarcoid is a chronic condition but it only causes problems when it becomes active...flares up so to speak. It is my belief that times of extreme stress bring it on. (During that time I was planning my outdoor wedding at my parents house, 3 1/2 hours away, trying to buy a house, changing jobs from working in NYC to NJ and some other major life changes.) My sister was also diagnosed with it...she was going through the tragic death of her son-in-law, the failing health of my father, and trying to set up a place in her home and take care of her ailing in-laws at the time of her diagnosis.

It is a condition that needs to be monitored because if it becomes "active" it can cause damage to the affected area...lungs, eyes, nodes. You will probably need to have chest xrays and go for pulmonary tests yearly. Also should have your eyes checked yearly. I can tell you I haven't had any problems with it since 1988. I did check it regularly for several years and then kind of just stopped worrying about it.

As far as I know there is no link to breast cancer or throid cancer. When I was diagnosed with BC I asked the oncologist if this might have an effect on the sarcoid and he said probably not. But I did read that chemo and radiation may increase the chance of making it active. And as I said before, increased stress, which a BC diagnosis and going throught those treatments can cause, I believe can cause problems.

So sorry you have this added worry, but, if it makes you feel any better, I have had the dx, been through chemo and surgery and am getting ready for rads...so far, no problems. It is good that you found it. You just need to make each doctor in charge of each step of this journey aware of it and continue to monitor it. Good Luck.

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