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6 month follow up with radiation oncologist

deanna14
Posts: 738
Joined: Oct 2008

Passed my 6 month follow up with the radiation oncologist with flying colors! Yea! He also had the results of the 2nd lymph node biopsy that I had last week. The results are still inconclusive, but no cancer cells were seen. The first biopsy included liver tissue, this one included pancreatic tissue and both were cancer free. Despite there being no cancer, there are still 2 lymph nodes that are enlarged and atypical cells without explanation. The rad/onc was going to discuss with the gyn/onc tomorrow and have someone get back with me. He said it my options would be given to me by my gyn/onc, but as far as he was concerned we could either watch them closely to see what they do or take them out. I do not want to have surgery again, but sure would feel better to get the nodes out and find out what is causing the enlargement. I guess I will wait and see what the doc suggests.

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I am so happy you passed the 6 month followup with the radiation onocologist. I am sure it is worrisome to have two lymph node showing atypical cells. I hope the onocologist says to observe them, as I can understand that you do not want to have more surgery. However I understand how you would like to have the nodes out, too. Tough decisions to be made. Good luck in making your decision. Is you itching better now. In peace and caring. HUGS to you.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Your news sounds good on the biopsies, overall, so congratulations on that! The good 6-month check-up is encouraging!

If the atypical cells in the lymph nodes are still microscopic and haven't formed a measurable tumor, you may be able to wait on the surgery and feel at peace with that. I know that we are both 'slice- it-out-NOW' women, but you don't want to have unnecessary surgery that may not even answer any questions or have any definitive curative benefit. I guess you listen to your oncologist with an open mind, get a second opinion if you can, and then trust in the advice you get. We all have lymph nodes that were left in following our initial surgery, even when we have 20+ removed, and none of us really know what's going on with the ones that remain. So even if they remove those few additional nodes for more biopsies, there wil always be more that weren't looked at. That makes surgery less satisfying than the 'optimal de-bulking' you already had. Or do I misunderstand the situation?

(((((Deanna))))

california_artist's picture
california_artist
Posts: 864
Joined: Jan 2009

Good morning, Deanna,
Hope today finds you well and less concerned. I wanted to ask about the nodes that are enlarged if you dont mind. Do you know exactly, sorta where they are? Do you know approximately how big they are? Have you also had a PET/CT or are the CTs the main diagnostic tools at this time. Have you had your C-RP (c reactive protein, it's a simple inexpensive measurement of the level of inflammation in your body) done. There is a possibility that there's an infection somewhere in your body, or if the nodes are near where your uterus used to be, doesn't that just sound awful? that they are enlarged cause they were fighting your cancer for quite sometime and brought in oodles of buddies to help.

I have had two nodes near where my little old uterus used to be, that grew a bit. They think. They were nearly 1 centimeter(10mm) and then over a six month period, they grew about half a centimeter. When I talked to my gynecologist, who I really do trust, he said that half a centimeter is so hard to measure exactly, and that I shouldn't worry. My oncologist wanted to continue with CTs every two months. I was very uncomfortable with that approach as was my gynecologist, who cautioned me about the excess radiation involved. That evening or the next there was a blurb on tv about the dangers of CT screening due to the radiation exposure. My reasoning for not seeing the validity in the CT only approach, was, whether they grow or not, a CT never shows metabolic activity. So, if they did show measureable growth, I still wouldn't know if they were most likely cancerours and a PET would have to be done anyway. So what was the point and who needs all the extra radiation anyhow. He would not do a biopsy incase you were wondeirng about that. While I was unable to talk my oncologist into the PET/CT screen, even though my insurance would cover it, I was able to go to my standard doctor's office and the female doctor there did order the PET/CT. I know I mentioned this before but because there was a possibility of an ongoing infection because the C-Rp was extremely elevated, I asked for and was put on high dose antibiotics for two weeks. I waited a week and then had the combination scan done. Because the nodes were over a centimeter the accuracy of the pet is estimated at 99%. Below that they are not as accurate. So, anyway, that's why I am asking those questions and offering my experience for you to consider. Hope this helps.

Why the liver and did you also pancreatic bios. That is concerning. Did you get a chance to look at that long list of things I sent to another, that could be symptoms of liver problems long before any blood work shows issues? I have a fatty liver and periodically some of those things show up. The liver issue is also most likely responsible for my very poor blood lipid results. And it's another reason I am reluctant to embark on a chemo journey.

As always, love, health and hope to us all,

Claudia

deanna14
Posts: 738
Joined: Oct 2008

I have not talked to my gyn/onc yet, he is the one ordering the biopsies. Hoping to hear from him today to see what his thoughts are on this lymph node issue. Originally they found 2 enlarged periaortic lymph nodes(I don't know the size) on my post chemo PET/CT scan. They were not there on the last CT I had in April. On the first biopsy, they had to go through the liver to get some of the lymph tissue and although I did not ask yet, I presume that the pancreatic tissue was just a side benefit to getting the lymph tissue. At any rate, the liver and pancreatic tissue were normal. I'll take that as good news.
I keep asking if the itching and the enlarged lymph nodes could be related. I am still itching even after the medrol dose pack, although not as badly. I am now only having to take benadryl 1-2 times a day. No one has yet to answer my question. I really don't think they know.
Anyway... I hope to have more answers after talking with the gyn/onc. He was in surgery all day yesterday, so hopefully I will hear from him today. Until then, I am going to take the "no cancer found" and believe that it is a good thing! I personally think there is an infection going on somewhere. Maybe he would be willing to do a trial of antiobiotics for a while?
I will keep you all posted.

california_artist's picture
california_artist
Posts: 864
Joined: Jan 2009

Sorry, to hear the itching is still going on.

If you decide to go the antibiotic route, for the nodes, and your liver can take it, I found that going full tilt finally worked for me. Less can tend to make the little buggers stronger later on. I took 500mg of amoxicillin four times a day for 15 days, and a persistent infection in the tissue of my face and neck finally went away after years of lesser attempts to dislodge it had failed. My liver looks really fatty on the PET, and the spleen is enlarged, but I was able to tolerate this regime just fine.

I had taken other drugs, but non had succeeded in getting rid of it for any long period.

Glad to hear they weren't biopsying your liver for some horrid reason.

It might be advisable to get a specific size of the nodes, and the lab report, just for your info and to help you make decisions in the future.

There is another thing to consider in all this. Any inflammation anywhere in body makes it more difficult for the immune system to fight your cancer. That, inflammation, is what the C-rp test measures. It's a simple blood test, costs about $20 dollars.

There's a book out there called Stop Inflammation Now, that talks about what your body goes through when there is inflammation.

I noticed some studies yesterday that mention they are focusing on developing drugs that will increase your immune systems response to disease and cancer in particular, cause they are realizing that the immune system is really the "bottom line" in fighting disease. I know you know all this, sorry.

Love,

Claudia

deanna14
Posts: 738
Joined: Oct 2008

Love the new pic, beautiful colors. I have a lot to think about and discuss with my doctor. In my mind, I keep thinking that there is a connection with the itching and the lymph nodes. The itching started right after the first biopsy of the lymph nodes. I guess the docs don't think that is the case... they don't have much to say when I mention it. I may request the Crp test or at least ask if they have done one. I really need to get a copy of the PET/CT results and the latest biopsy results. I was so shocked and upset the day I got the PET/CT results that I forgot to ask for a copy. It just was not what I wanted or expected to hear so soon after completing treatment.
I have considered off and on going to Cancer Treatment Centers of America for a second opinion. The reason I have looked in to them is because they have a strong holistic approach to treatment. I have talked to them on the phone a couple of times and they seem to be more likely to explore alternative as well as conventional treatment. The cancer treatment program here is not like that. Well, I guess for now I will wait and see what my current doctor has to say about the latest results before I make any decisions. If I decide to go to CTCA it will mean traveling from Southwest Missouri to Zion Illinois which is a suburb of Chicago. They would pay for my flight, but not for my husband to go with me (except on the initial visit).
Hugs,

Deanna

california_artist's picture
california_artist
Posts: 864
Joined: Jan 2009

Hey, there girlyque,

Uh, I didn't realize that the itching had started after the biopsy where they went through the liver to get the samples. Ouch! Do you think that could be part of the problem?
There's a substance in beets, fish and legumes called betaine, that is just swell at helping repair the liver. You could try some beets, probably wouldn't hurt. They did a study, no kidding, me and another study, what else is new, where they had people take betaine for a year and it reversed liver damage to the point that tranplantation was no longer necessary.

That trying to make a decision when there are a whole slew of options can drive a body to distraction. Makes ya just want to crawl in bed and pull the covers up over your head.

You look real healthy, that's encouraging, eh?

As always, love, health, hope and a lot of patience to us all,

Claudia

The photo is of me fortyish years ago. It's been a long, slow, downward slide since then.

deanna14
Posts: 738
Joined: Oct 2008

I don't know what this blasted itching is from, but I had and episode last night and again this evening. Benadryl stops it, but I sure wish I knew what was causing it. I have some fresh beets from the garden, I will try eating some of them. Can't hurt, right?!
My doctor did surgery on my SIL on Thursday, she had a mass on her ovary. He did a complete hysterectomy on her, no cancer, thank God. Anyway, he visited her in the hospital today to discharge her, and he is out of the office next week. So I suppose that means another week of waiting to find out what he thinks we should do. Frustrated!!!!
I love that picture, you look so beautiful there, your hair is very pretty. What kind of dogs are those? I am an animal freak. I would have a houseful of dogs if my hubby would agree to it! LOL.

fuzzytrouble's picture
fuzzytrouble
Posts: 213
Joined: Feb 2009

hey Deanna, I sure hope they figure it all out soon for you, just so you can breath easy and enjoy life. It is so hard not to think about it all even though we try hard just to be normal. Here's to good news for you very soon.

Hugs from Oregon,
Sharon

deanna14
Posts: 738
Joined: Oct 2008

I'm really not sure what normal is anymore. However, I am having some really fantastic days lately and noticing my energy and stamina increasing. The heat is not even bothering me like it had been. Trying to get on with life and let the Lord do my worrying for me.
I like your new pic. Is that your husband? You look like a very happy Grandma. Congratulations.

Teresa 61's picture
Teresa 61
Posts: 84
Joined: Dec 2008

Nothing like a new baby to love, enjoy. Love your new picture. My husband and I have 11 grandchildren between us and we just love them all so much.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

It such fun to see the updated photos and how much stronger and healthier everyone is starting to look, post-treatment and ever DURING treatment. There's a 'sweetness' on every single face, and I can see the love and hope in every face. Like that haunted feeling has disappeared, and acceptance and resolve and optimism has set in for real. You feel it in your hearts and it shows in your faces. Shine on, you crazy diamonds!

fuzzytrouble's picture
fuzzytrouble
Posts: 213
Joined: Feb 2009

Yes we do look much better, and the funny thing about looks is that I could never put a name to what we all had. You hit it perfectly Linda "haunted look" is definitely what I had anyway and I am glad to say it is gone. I have my energy back but still have feet problems, but I can deal with that.
In my new picture that is my husband of 37 years this coming September. We are 20 years apart but we were meant for one another and of course our new grandbaby Martha Rose.

Hugs to you all from Oregon,

fuzzytrouble's picture
fuzzytrouble
Posts: 213
Joined: Feb 2009

Teresa that is a amazing amount of grandchildren, are you near them enough to spend time with them all? I live 3,000 miles away from my grand baby which is so hard, but I will try to visit a lot. I can still feel her sleeping on my chest and you are so right about new babies.

Hugs to you from Oregon

Teresa 61's picture
Teresa 61
Posts: 84
Joined: Dec 2008

Martha Rose, what a beautiful name.
My oldest son has 4 children , we are very involved with them and they only live 5 miles from us. My youngest son had 2 children, they now live in Purdy,Mo., moved there 5 years ago, broke my heart... they are 16 & 18, have cell phones so talk to them often. The other 5 are from my husbands 2 daughters, they live in Ohio. We have alot of communication with them and see them as often as we can.Thank goodness for computers, it's easy to get lots of picture's.
Enjoy Martha Rose and hope it won't be to long before your holding her close to your chest again........
Linda, love your description of us all, really got a kick out of that...
Hugs, Teresa

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I hope you are feeling as good as you look in your picture. I love the backdrop. I would love to be there. Hope you are getting your strength up and enjoying your "doctor- free" time.

Teresa 61's picture
Teresa 61
Posts: 84
Joined: Dec 2008

Except for a few aches and pains in my back,legs and feet I feel great. Hope you are doing well too. I love all your new pictures, the quilt is really neat. Also loved the picture of you standing by the globe.
Hugs, Teresa

california_artist's picture
california_artist
Posts: 864
Joined: Jan 2009

I changed my picture again, but yesterday I had a lovely photo of me from forty years ago, so i looked way better.

deanna, the dogs are Puli and a Poodle mix named Minyette.
I'm going to see what I can find in my best friend "Google" re itchy stuff and node bios.

Be nice when we're all well again, eh??

Much love,

Claudia

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