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A little something

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Well, two little somethings actually.  My gyn/onc went over the PET scan with me.  There are two "suspicious" areas in two lymph nodes, one para-aortic, the other just above my kidney.  Neither of the nodes is enlarged, and the sizes of the suspicious areas are tiny..one is 7mm, the other 5mm.

So the question is, what to do about these little devils?  At the moment, he feels chemo would be overkill.  He is going to talk to my radiologist about possibly using cyberknife to blast those lymph nodes.  However, he doesn't know whether they would want to use cyberknife without confirming that these nodes do indeed have cancer cells.  The one para-aortic node would be inaccessible for biopsy, and the one above my kidney would be tricky.  Also, since the biopsies are CT-guided, he is not sure the area would even show up to guide the biopsy.

He is going to get back to me Monday after he consultsl with the radiologists.

Similar to daylady's gyn/onc, he said that this was purely nodal, not life-threatening, but certainly something to keep an eye on.  So begins the game of whack-a-mole.

Not great news, but not horrible news.  Oh, and neither of these areas was in the area that would have been radiated by external radiation.  Nothing showed up there or in the pelvis at all.

Nellasing
Posts: 529
Joined: Oct 2016

Don't ya just wish there was some sort of definitive test that could be done to get this stuff once and for all?! 

So glad you don't have anything showing up where you were concerned!!  We'll take the wins Laughing

Prayers for direction and guidance for you and your team Kiss  (((HUGS)))

Mmpeterson
Posts: 124
Joined: Sep 2016

Sending you prayers and hugs that your doctors will decide what the plan is.  Not horrible news is the hope I look for everyday! Maryanne

txtrisha55's picture
txtrisha55
Posts: 685
Joined: Apr 2011

I did chuckle at your Whack a Mole comment.  But wishing you the best and as the ladies stated take it as a win and that it turns out not to be anything. trish

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1642
Joined: Jun 2015

Chris, I wish your news was absolute. Seems like we just can't ever get that with this cancer! I'm glad you don't have to do chemo again and I hope you can resolve this with minimal treatments. Please let us know once you know the next steps. Glad you are in a good place mentally. Love and Hugs, Cindi

rcdeman
Posts: 257
Joined: Aug 2016

Darn! Was so hoping that your PET scans were clear. But at least they don't seem to be too serious and detected quite early. Now the question is, my doctors told me that PET scans don't pick up hybermetabolic activity less than 8 mm, so how were they able to pick up these small 7mm and 5mm "suspicious" areas?

Hoping for the best resolution to tackle these areas. Personally, I think cyberknife may be the best option even if these nodes aren't cancerous, just in case. It may be a precursor or something.

Best,
Rebecca

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2728
Joined: Mar 2013

Chris, I can only support a lot of what the ladies have already said.  I do know you have always done your homework and suspect you will do the same now.

Hugs dear one. 

MAbound
Posts: 1022
Joined: Jun 2016

Ah, Chris! The worries never end, do they? I'm sure it's going to be a long weekend for you until you find out what direction your doctors want to go in. I'm hoping you can find your "happy place" to retreat to, but I know that's easier said than done. Uncertainty is such a b.......!

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

Sorry you didn't get an unambiguous response, but I'm glad for you that it seems to be manageable. Take some time to breathe before diving in again!

Diya
Posts: 93
Joined: Apr 2015

So annoyed to hear your news. I was hoping for a clear scan for you. Really hope it clears somehow quickly. Sending you hugs!!

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Actually, I don't feel too bad.  I'm glad that whatever impelled me to call my gyn/onc and got me the PET scan happened so we could find these so early.  Nothing shows to account for my other sensations, so it just might be part of my new normal.  They seem to have diminished quite a bit.

I did get an email from my gyn/onc late this afternoon saying he had already talked to my radiologist who is going to consult with his colleagues.

Regarding the PET scan and the size of the activity, I believe my doctor said it won't pick up anything less than 5mm? I'm looking forward to getting the hard copy of the report so I can see exactly what it said.

takingcontrol58
Posts: 257
Joined: Jan 2016

Chris,

As you probably know from reading my posts, I really believe that the only way to prevent or stop cancer is determine
the root causes of what is making your body form a tumor. So in your case, you have to look at the role of lymph nodes.

The role of the lymph nodes is to filter out waste products, bacteria and viruses, and assists the immune system
in building a response. They also contains immune cells.

I would suggest you talk to your doctor about getting a blood test to test your immune system- I get a test
regularly which is called Lymphocyte Subet Panel 1 through Quest.  It will tell you the state of your T cells, B cells and Natural
killer cells. This is what comprises our immune system and  the immune system is the body's innate process to fight all diseases.
As you know, radiation can damage our immune system. 

If you find out your immune numbers are not optimal, there are some good supplements to use that boost the
immune system.  I have had tremendous luck in boosting my own immune system with some of these supplements,
in addition to my changed diet.

Doctors are quick to rush in with more treatment when they don't know what to treat.  Your lymph nodes are
enlarged for a reason.  They are doing their job so if you just blast them away, and you still have an underlying
issue that isn't addressed, the problem may show up in new lymph nodes.

Just a suggestion. Personally, I would prefer trying a non-toxic solution first, since what was discovered on the PET is so small.

Takingcontrol58

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I always find your posts interesting and I agree with much of what you say. Working with my naturopath, I am already taking a number of supplements to aid my immune system, and I have just notified her of this latest development.  So I'm pretty sure there will be an adjustment there.

Because this area of suspicion is so small (the nodes aren't even enlarged), I am not in a huge hurry to rush into anything major.  However, it is certainly a concern.

I will check out the Quest site regarding that test.

Chris

EZLiving66's picture
EZLiving66
Posts: 1403
Joined: Oct 2015

I'm glad they only found those two nodes.   And,  they could be anything, who knows?  Keep us updated about what you're doctors think .  It sounds like just another little blip on your road to recovery. 

Love, 

Eldri 

LindyLu
Posts: 72
Joined: Sep 2016

Chris, was hoping for a clear result for you!  Love your attitude, an inspiriation.  Keeping you in my prayers as you and your docs deal with this newest findings.  

Hugs, ~LL

 

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

I am so sorry that you have to go through this waiting and worrying.  When my Gyno-Onc ordered a PET scan because he saw two suspicious spots in my abdoman, they turn out to be nothing, still there , but nothing.  Hoping this is what your spots are.  If they turn out to be something, it is certainly early,  something good.  You are so strong, you can handle what ever comes.  My Pet scan did show other spots that were Metastizised cance.  If I hadn't had the PET scan they would have gone untreated for another three months and would have a good chance to grow.  Sometimes things that don't seem like it at the time can turn out to be a blessing.

Hugs and prayers, Lou Ann

cindy0519
Posts: 173
Joined: Nov 2015

Glad your taking it slow and not allowing concern to turn to panic.  Evidence of your strength! Praying it turns out to be something that can be quickly and easily mitigated.

daylady's picture
daylady
Posts: 122
Joined: Dec 2014

Hey Chris, Have been thinking about you non-stop and sending hugs your way.  I know you will make the choice that seems right for you, and there are no easy answers.  But I have been leaning more and more towards "sometimes less is more".  My gyn/surgeon has concern about "treating a scan" and often reminds me that "doing nothing" is actually an option.  Wish it were easier.  Many hugs sweet lady.  I'm in your corner!! - Helen

BC Brady's picture
BC Brady
Posts: 70
Joined: May 2015

I am trying to get caught up on the blog. Did you decide to treat these nodes? You look great and I hope you're not too disappointed. Lymph nodes are amazing structures - and Eldri is right, the activity seen could be anything. My disease is nodal as well - and now I have a few less after the lumpectomy last week. Oddly, the pathology came back showing no new primary breast cancer afterall. All tissue was uterine metatsiszed. I was told at my postop yesterday that had the pre-biopsy showed that, I would not have been operated on. I'm not sure if I should feel upset I've been put thru surgery, or grateful to have had 2 tumors and 12 diseased lymp nodes removed. Less cancer is better, right? And I'm making a pretty good recovery so far. Add to that - now I'm re-eligible for the MATCH Trial, but I would have to stop the targeted chemo I'm on now for 8 weeks - a scary prospect. All opinions welcome. xoxox

Billie

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

My doc didn't get back to me this week, and frankly, I've been busy enjoying my life apart from cancer and didn't feel compelled to chase him down.  However, I am going to get in touch with him at the beginning of the week to see what his various consultations had to say.

I received my copy of the PET scan report in the mail today.  I'm glad I did, because I had confused some of the numbers.  There are two areas of "interest."  1) a 9mm focus of increased activity just medial to the left renal pelvis SUV 4.3  and 2) increased activity within a left posterial coronal node measuring 7mm SUV 3.8.  That first one doesn't sound like a lymph node to me, but I thought that was what he indicated.

In any case, I haven't done anything yet other than what I am already doing with diet, supplements, exercise, etc. except that I have added nightly castor oil packs, which have been shown to increase the production of T-11 cells and stimulate the immune system.  

I'll let you all know what I find out next week.

Chris

And yes, Bille, less cancer is definitely better!

janaes
Posts: 800
Joined: May 2016

I love to hear that you got too busy to worry about you doc calling.  I want to do that more and more myself.

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

My gyn/onc did talk to both my radiologist and another on staff who does the stereotactic radiation.  Apparently, both felt that rather than do stereotactic, they want to radiate the whole area.  Not thrilled about that, and gyn/onc offered to arrange a second opinion in San Francisco where they actually do that type of radiation.  In any case, I have a consultation scheduled to hear the reasoning behind the recommendation and exactly what they think needs to be treated.  Especially in view of the fact that my gyn/onc was not totally convinced that what showed up was indeed cancer, I'm a little surprised.  And dismayed.

Lou Ann M's picture
Lou Ann M
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Joined: Feb 2015

Oh, sweeet lady, I hate that this is happening to you.  I hope and pray that every thing works out to the best.  The one good thing is that it was caught early.

Hugs and prayers, Lou Ann

MAbound
Posts: 1022
Joined: Jun 2016

Yeah, I hear you. I start tomorrow on the pelvic radiation. What's helping me face it is that I understand the why of it between what I heard from others here, what I've read, and from the radiation oncologist who's overseeing my treatment. My gyn oncologist wanted wide field radiation, but the radiation oncologist is narrowing what gets treated using image guided 3D-CRT. He would have preferred to have used IGRT (Image Guided Radiation Therapy), but said that is extremely complicated and therefore extremely expensive and insurance companies don't cover it. The image guided 3D-CRT is a modification that pretty much does near the same thing. It molds the area targeted three-dimensionally to allow them to spare a lot more intestine, bladder, and the hip bones than the traditional wide field does. It gives me hope that I'll come through this reasonably ok, but boy, it sure was hard not to get emotional when I was going through the simulation today. Everything so far indicates I'm NED now, so I can't help but wonder if I'm doing harm when maybe I don't need to. Be sure you understand the different ways they deliver pelvic radiation because it sure helps to understand any explanations you get when you meet with the radiation oncologist. I was told that fatigue, diarrhea or constipation (depending on how I eat), and vaginal stenosis will be the main short term side effects to still expect. So sorry that you're having to face this decision yet again!

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

When I saw my gyn/onc last, he also did not think wide field radiation made sense.  I am interested in seeing exactly what kind of radiation they are talking about.  When I talked to the scheduler today about the consultation, she said that even though I had been seeing Dr. Schmidt, whom I really liked, I needed to see another doctor because of the type of radiation being considered.  Dr. Schmidt does both external radiation and brachytherapy, so I'm curious.  Perhaps this doctor is a specialist in stereotactic radiation.  In any case, the first consultation is scheduled for Monday morning.  I am starting to get my questions together...  and I will certainly ask about both the image guided 3D-CRT and the IGRT.  I do know that Kaiser's radiology departments here do not offer all of the possible radiation options, and that's why my gyn/onc suggested a second opinion in S.F.

 

 

ncg007
Posts: 133
Joined: Nov 2015

Chris...sorry to hear this...I'll be thinking of you and I hope all goes well.   Keep up with that positive attitude!

Nancy

Nellasing
Posts: 529
Joined: Oct 2016

So sorry to hear that there is another cross road- it's easy for them to come up with these things and then we have to sort and weigh out the options- I hope the 2nd opinion gives you more to go on.  Prayers for the BEST to come CLEAR for you   (((HUGS)))

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1642
Joined: Jun 2015

Sure seems like there isn't an across the board agreement once again.... I'm glad you are going to get a second opinion.

The one thing that Anne told me (AWK) was that she never had mets in the areas that had been treated with radiation. It is something to consider when you start getting all of the feedback.

So sorry you are having to deal with this again. Please let us know what the next steps end up being for you.

Love and Hugs,

Cindi

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

Chris, I know this news was not what you expected, but I'm sure your strength and positive attitude will get you through whatever comes next. Rebecca

janaes
Posts: 800
Joined: May 2016

I will be praying and thinking of you as you go forward.

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

So, so sorry to hear that news, Chris! As you know all too well, MMMT is incredibly aggressive so they need to use all the tools that they have at their disposal to combat it. Good news is that you still had this treatment available to you. Praying that it takes care of it and that you can get back to "normal" life again. Kim  

giggs100's picture
giggs100
Posts: 91
Joined: Oct 2015

My thoughts and prayers are with you Chris.

Jerri

DrienneB's picture
DrienneB
Posts: 186
Joined: Aug 2013

Arghh regarding decisions like this. Does it seem off-base of me to suggest seeking another opinion from a gyn/onc (not a radiologist) regarding interpreting the PET scan results? I know we have a very aggressive cancer -- I also have MMMT -- but my doctors have not been very keen on PET scans. I have read that they show changes that are sometimes the result of chemoradiation instead of evidencing cancer activity. I know that you had bracheythearapy not pelvic radiation.

I also know that you are very thorough and thoughtful. I am sorry you have to make another hard decision. Praying for wisdom for you and your physicians too.

-j

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Not off-base at all.  Got the distinct impression from my gyn/onc that he was kinda surprised at the radiologists' take on things.  I'm guessing that's why he suggested a second opinion from radiologists at another facility.  I imagine that he and I will be having some additional conversations about this.  He was not convinced that what he was seeing was necessarily a recurrence.  Stay tuned...

Mmpeterson
Posts: 124
Joined: Sep 2016

Second opinion is a really good idea.  Keeping u in my prayers!!  Many hugs to u Chris for good news. Maryanne 

brissance's picture
brissance
Posts: 192
Joined: May 2016

Dang it Chris, I am just catching up with my reading, this is NOT NOT NOT fair.  I know you will handle and I know you will beat it.  It isn't the end of the world but dog gone it.  I know they are doing marvelous things in directed radiology.  I am glad you are holding them to their responsibilty of letting you have the information so YOU can make an informed decision.  You know we are all so very much on your side and support you dear lady.  God bless you.

LindyLu
Posts: 72
Joined: Sep 2016

So sorry, Chris, to hear you need to go through this process.  I know you will get all your facts and questions answered before making your decision.  This cancer is THE PITS!  Sending you hugs and positive thoughts...~LL

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