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Extracapsular spread

luvofmylif
Posts: 344
Joined: Sep 2012

My husband had one lymph node with extracapsular spread so therefore, wil be receiving chemo with radiation. Question is, does anyone else on this site have experience with the extracapsular spread. Of course, I am worrying myself sick about this as a prognostic factor. Thinking if only we would have know a little sooner maybe this wouldn't have happened. Worrying and obsessing over this. Any information is appreciated

Thank you

Joan

phrannie51's picture
phrannie51
Posts: 3636
Joined: Mar 2012

"extracapsular spread"....does that mean that a lymph node is encapsled, but the capsule is bigger? Many of us had lymph node involvement....I had two lymph nodes swollen, one on each side of my neck...the one on the right was very large. Two weeks into radiation and it had shrunk down to almost normal, and both were totally gone by the end of radiation.

My ENT told me that when I get my post treatment PET scan, if any lymph nodes should light up, they will go in and take them at that time.

Ask the Onc. questions...have him explain exactly what extracapsular spread means...it may be a name for what many of us went thru, that our docs didn't apply a "term" for it.

p

luv2cut1's picture
luv2cut1
Posts: 285
Joined: Oct 2010

I don't post much anymore, but I try to keep up and keep everyone here in my prayers. I had to respond to your post because my husband also had extracapsular spread and I read all of the statistics and was scared to death. All I can say is my husband is 3 years out from treatment and NED. He had surgery, chemo and radiation. I do suggest that you go to a top notch cancer center that has experience with this type of cancer. We were treated at the University of Colorado and they were awesome.

Good luck. Prayers are with you. I hope my husband's story at least helps quiet the fears a little bit.

Myka

longtermsurvivor's picture
longtermsurvivor
Posts: 1768
Joined: Mar 2010

extracapsular spread simply means the cancer has eroded through the walls od a lymph node. it very likely has more to do with the individual cancer than it doe with a delay of weeks or even months. it signifies that the cancer i behaving a little more aggressivelu, and will cause the treatment team to up the treatment somewhat. it is certainly not a death sentence. there are other nuances of histopathology that the oncologist looks for as well, like perivascular or perineural invasion, or presence/ absence of inflammatory infiltrate. But these things are for discussion purposes only. They really dont have a whole lot to do with outcome, compared to other more obvious factors, like presence of distant metastasis, for instance.

Best advice: dont sweat it.

Pat

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

My husband also has extracapsular spread in his lymphnode. The doctor we have now said that if he would have been the ENT taking it out and found out it was cancer while in surgery, which the doctor did, he would have automatically done a neck dissection, which he did not. Our doctor has been going back and forth trying to decide if he should go back in and clean out David's neck. He has already had the lymphnode removed and BOT surgery with the davinci robot. They have decided to go with chemo radiation concurrently and then reassess the lymph nodes after healing to see if they should go back in. I think as long as you have good doctors don't worry too much. They know what they are doing (I pray that ours does and that God will give him the insight he needs to heal David).
Vivian

longtermsurvivor's picture
longtermsurvivor
Posts: 1768
Joined: Mar 2010

Pat

hwt's picture
hwt
Posts: 1854
Joined: Jun 2012

One of my positive lymph nodes was no longer ecapsulated. Sounded scary but my first CT w/contrast following surgery, rads & Cisplatin came back NED.

luvofmylif
Posts: 344
Joined: Sep 2012

Thanks for the info and encouragement. It is all so scary...and I am new to this cancer battle. Still trying to figure out how one minute things are fine and the next one your spouse has stage IV cancer. I know I am preaching to the so called choir when I speak about this...you all battle this bravely everyday. Just takes me longer to accept things but I will fight this with my husband.

We are going thru a major cancer center in St louis... Siteman at Washington University and I do have the utmost confidence in them.

Thank you to all of you for your responses and information.

I hope all of you win the battle.

Joan

hwt's picture
hwt
Posts: 1854
Joined: Jun 2012

I had my surgery at Barnes/Siteman also. They are rated top 10 in country. I had chemo/rad at Barnes West. My cancer was in lower jaw, a 19 hour surgery to remove and reconstruct my jaw using the fibula from my leg and titanium. I finished rads/chemo mid-May. First CT w/contrast was clean. First PET scan tomorrow. Do you live in STL?
It is scary but when your husband comes out on the other side with no evidence of disease it suddenly all becomes worthwhile.

luvofmylif
Posts: 344
Joined: Sep 2012

Yes, live in St Louis, well O Fallon Mo to be exact. We , too, will be radiation and chemo at the Creve Coeur facility. It all starts on Monday....so this is our last week of a half way normal existence, so we have been trying to just have a carefree week. I find the closer I get to Monday the more fear I have . Reading about all the side effects of chemo and rad is so scary because there is standard outcome. The side effects seem to be all over the place.

But, its good to hear of someone treated at same facility. We also have a friend that had a similar surgery as yours...he is doing well. In fact we will be celebrating with him at a winery on Sunday for his birthday.

Joan

luvofmylif
Posts: 344
Joined: Sep 2012

Oh, and good luck with your scan...wishing and praying for positive outcome.

longtermsurvivor's picture
longtermsurvivor
Posts: 1768
Joined: Mar 2010

those of us who either live, in, or are treated in St Louis. In addition to you two, there is Greg53, myself and luv4lacrosse. I live quite a ways away, but have been treated in St Louis since 1998' first at SLU, then at St Johns.

hwt's picture
hwt
Posts: 1854
Joined: Jun 2012

Blessings to all. I am fortunate to live within walking distance of Barnes West. Joan, you will be very impressed with Scott and the girls in radiology, very compassionate and always on time. Can say the same for staff in chemo lab and volunteers. Was a bit unsure of Kevin, the Rad Nurse, at first but found him to be genuinely caring. Another advantage of BJW is convenience of parking, rads, chemo, lab, ONC, Rad ONC, and pharmacy all in that one convenient building. I hope your husband's side effects are minimal and short lived.

luvofmylif
Posts: 344
Joined: Sep 2012

It is a small world indeed. This is all pretty much a nightmare because my husband was completely healthy one day and had stage 4 cancer the next day...unbelievable.

Just trying to accept it all and so worried.

We have lived the last week as though it were a normal week. Each day he did something fun and spent it with family and friends. Last night was spent with friends enjoying the Cardinals win.

Go Cardinals...they are a great example of the "never give up" mentality. Especially after their performance last year.

Best to you and everyone on this site.

Joan

katenorwood
Posts: 1812
Joined: May 2012

Joan,
Your dead on, there are days that feel like we're in a bad dream. But it sounds like everything is going as planned. Keep posting, as you and your hubby have a bunch of us pulling for you. Katie

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