Terrifying news: my CA-125 went up to 154!! They are calling for hurry-up CT-scan to see if my canc

13

Comments

  • thank you
    thank you Member Posts: 77

    some scary stuff I found online
    Thanks, Claudia, for the good advice. I'll add that C-reactive protein test to my notes for Wednesday's oncologist appointment. I don't need any more false-positives!

    I did some internet research to try and learn more about 'stranding' since I have it, and found something really scary for me:

    "Acute perforation of the colon associated with colon cancer may cause fat stranding that is difficult to differentiate from that seen in cases of diverticulitis. Bowel wall thickening may be a helpful feature, as the mural thickening seen in malignant perforation of the colon tends to be more severe and more focal than that associated with diverticulitis. Other helpful clues are shouldering, whether the wall thickening is concentric or not, adjacent lymphadenopathy (which I looked up & is enlarged lymph nodes), and metastases. In some cases, however, differentiation between colon cancer and diverticulitis is not possible with CT alone. Enlarged regional lymph nodes are more suggestive of colon cancer than of diverticulitis."

    so scary since I have the stranding, the bowel thickening, and the enlarged node. ARGH! No more research for me until after I get my official CT results!

    Linda, they mention acute
    Linda, they mention acute perforation of the colon associated with colon cancer: This is not the case for you, since colon perforation is VERY painful, you would be in the hospital. Stranding is a term that is used for inflammation, which is very unspecific. CRP and ESR are also unspecific, they don't add to diagnosis of nothing. A tooth infection can cause both of them to go up. I agree that you should celebrate for now. They saw no tumor, no metastasis. THAT'S WONDERFUL NEWS. Even the lymph node could be due to inflammation. Remember: a cancer patient has the right to have other diseases not only cancer recurrence. I am sure this is late radiation inflammation, or gastritis. (which by the way you took from Italy or Turkey, not Greece.... :-) I am Greek.... :-).
    Your case reminds me my mom's inflammation that they saw on the MRI and WAS CONFIRMED BY PET!!!. It is not theoretical, it happens.
    Enjoy your weekend.
  • Songflower
    Songflower Member Posts: 608

    some scary stuff I found online
    Thanks, Claudia, for the good advice. I'll add that C-reactive protein test to my notes for Wednesday's oncologist appointment. I don't need any more false-positives!

    I did some internet research to try and learn more about 'stranding' since I have it, and found something really scary for me:

    "Acute perforation of the colon associated with colon cancer may cause fat stranding that is difficult to differentiate from that seen in cases of diverticulitis. Bowel wall thickening may be a helpful feature, as the mural thickening seen in malignant perforation of the colon tends to be more severe and more focal than that associated with diverticulitis. Other helpful clues are shouldering, whether the wall thickening is concentric or not, adjacent lymphadenopathy (which I looked up & is enlarged lymph nodes), and metastases. In some cases, however, differentiation between colon cancer and diverticulitis is not possible with CT alone. Enlarged regional lymph nodes are more suggestive of colon cancer than of diverticulitis."

    so scary since I have the stranding, the bowel thickening, and the enlarged node. ARGH! No more research for me until after I get my official CT results!

    Your CT Scan
    I think your results of the CT scan sound pretty good if you ask me. Lymph nodes can be enlarged over alot of things; and we know you are having diarrhea and inflammation there. I am thinking maybe you need a colonoscopy. When was your last? I had my colonoscopy about a month after treatment and he told me that part of my intestine had either been scraped by his instrument or was irritated from radiation. Remember I only had brachytherapy - six sessions but part of the intestine had fallen over the uterus and unto the radiation field. It can be inflammed for quite a while. Perhaps you should go into your primary care office and give them stool cultures; particularly after your trip to Greece. Also, during chemo we get so immunosuppressed that it is easy to have infections hiding inside. Your symptoms don't sound like colon cancer to me. I do think you need some stool cultures; they also need to check for parasites, yeast, fungus, etc after all the chemo. And you do like to work in the garden.

    I think of you everyday. CA125's don't sound very accurate in our cancer to me; sometimes I wonder why they even follow them. They just make us nuts!
    Diane
  • kansasgal
    kansasgal Member Posts: 121 Member

    some scary stuff I found online
    Thanks, Claudia, for the good advice. I'll add that C-reactive protein test to my notes for Wednesday's oncologist appointment. I don't need any more false-positives!

    I did some internet research to try and learn more about 'stranding' since I have it, and found something really scary for me:

    "Acute perforation of the colon associated with colon cancer may cause fat stranding that is difficult to differentiate from that seen in cases of diverticulitis. Bowel wall thickening may be a helpful feature, as the mural thickening seen in malignant perforation of the colon tends to be more severe and more focal than that associated with diverticulitis. Other helpful clues are shouldering, whether the wall thickening is concentric or not, adjacent lymphadenopathy (which I looked up & is enlarged lymph nodes), and metastases. In some cases, however, differentiation between colon cancer and diverticulitis is not possible with CT alone. Enlarged regional lymph nodes are more suggestive of colon cancer than of diverticulitis."

    so scary since I have the stranding, the bowel thickening, and the enlarged node. ARGH! No more research for me until after I get my official CT results!

    Diverticulitis? Clostridium Difficile?
    Have you done a recent stool sample to rule out clostridium difficile (c. diff)? I picked that bacterium up in the hospital while I was being treated for diverticulitis. It took me a while to figure out that I was no longer dealing with just the typical symptoms of diverticular disease. After a couple months of occasional agony and ongoing watery stools, I was at my PCP’s office with a broken bone in my foot when I mentioned my intestinal symptoms. My PCP and her PA sounded like a chorus as they said, “C. diff” at the same moment. My stool test confirmed their suspicion.

    Has diverticulitis, itself, been ruled out?

    Sorry to pose additional questions when you have so many already swimming in your mind. Of course you know we all want your symptoms to be for something quickly and easily treated!

    More hugs from Sally
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    kansasgal said:

    Diverticulitis? Clostridium Difficile?
    Have you done a recent stool sample to rule out clostridium difficile (c. diff)? I picked that bacterium up in the hospital while I was being treated for diverticulitis. It took me a while to figure out that I was no longer dealing with just the typical symptoms of diverticular disease. After a couple months of occasional agony and ongoing watery stools, I was at my PCP’s office with a broken bone in my foot when I mentioned my intestinal symptoms. My PCP and her PA sounded like a chorus as they said, “C. diff” at the same moment. My stool test confirmed their suspicion.

    Has diverticulitis, itself, been ruled out?

    Sorry to pose additional questions when you have so many already swimming in your mind. Of course you know we all want your symptoms to be for something quickly and easily treated!

    More hugs from Sally

    Phone call from my oncologist: OFFICIAL RESULTS : NED!!!!!!!
    My chemo oncologist just called to say that he had the notes from my CT-scan today, and although he hadn't looked at all the notes, the SUMMARY read "No Evidence of Disease"!!

    WHOPPPEEEEE!! & WHAT ?????

    My husband actually had tears run down his face; he was so relieved. I asked Dr. White on the phone if he had my scan slides open in front of him, and he said "no". He said that the person who reviewed my scan slides summarized with "no visible masses, tumors, or lymph node enlargement". I couldn't tell him what Audie has seen or the cursory 'look' she'd already had done, but I plan to ask Dr. Nash on Wednesday to open up my slides on the computer so that we can discuss the inflammation and bowel issues I'm having; and maybe I can get some more information on that little lymph node that Audie saw that wasn't on the scan last time. Dr. White said the CA125 rise must be from something unrelated or perhaps it was even a lab error, and that he will have Dr. Nash order a new CA125 when he sees me Wednesday.

    So, I am thrilled, of course. Confused but thrilled. My DIL Audie is having someone else she trusts review my scan slides over the weekend just to get a second opinion before we ignore the lymph node she saw. And I will make sure Dr. Nash reviews them so that I am sure this isn't a false sense of security I have been given. But for now, for the weekend, I'm DANCING WITH NED!!! (abeit with a questionable CT and a high CA125).
  • Gunhild
    Gunhild Member Posts: 36

    some scary stuff I found online
    Thanks, Claudia, for the good advice. I'll add that C-reactive protein test to my notes for Wednesday's oncologist appointment. I don't need any more false-positives!

    I did some internet research to try and learn more about 'stranding' since I have it, and found something really scary for me:

    "Acute perforation of the colon associated with colon cancer may cause fat stranding that is difficult to differentiate from that seen in cases of diverticulitis. Bowel wall thickening may be a helpful feature, as the mural thickening seen in malignant perforation of the colon tends to be more severe and more focal than that associated with diverticulitis. Other helpful clues are shouldering, whether the wall thickening is concentric or not, adjacent lymphadenopathy (which I looked up & is enlarged lymph nodes), and metastases. In some cases, however, differentiation between colon cancer and diverticulitis is not possible with CT alone. Enlarged regional lymph nodes are more suggestive of colon cancer than of diverticulitis."

    so scary since I have the stranding, the bowel thickening, and the enlarged node. ARGH! No more research for me until after I get my official CT results!

    A Little Knowledge can be a Dangerous Thing
    I am an RN and like you have UPSC with the typical treatment. Some times I wish I didn't know anything and could just take each situation as it comes rather than anticipate and make myself crazy. I try not to use the Internet for information as there is a lot of misinformation out there. When I do want to know something I go through the library website to licensed medical information or go through Sigma Theta Tau (Nursing Honor Society) website. I hope that things work out well for you. It's easy to blame every symptom on cancer and/or the treatment received and miss the actual cause of the problem I pray this weekend will not be too anxiety producing for you. I don't think we ever really relax with this diagnosis.
  • maggie_wilson
    maggie_wilson Member Posts: 596

    I'm back from my CT-scan with VERY un-official news!
    Wow! I am so touched that you all are waiting to hear my news. Thank you so much.

    I’m just back from my CT-scan this afternoon, with no official results yet. MY DIL Audie did the scan herself and asked the doctor who will later review my scans in more detail to look over them quickly in a cursory way while I was still there. I am to act surprised when I get the official 'news'; this is that UN-official. Prefaced by that caution, here's what I found out:

    Audie used a very small grid of 1.2 mm for my scan. There were no masses of any kind, and my lungs and liver looked completely clear. There was 1 lymph node between the aorta and kidney that was visible that hadn’t been visible before, so is enlarged a bit but still very small, on only 2 or 3 of the slides. There was a very small amount of fluid on both sides of my pelvis and a lot of ‘stranding’ and inflammation throughout my bowel areas that had not been there before. I asked what ‘stranding’ is, and Audie said it is like when you have an infected wound OUTSIDE and it is pink & swollen all around it; stranding is sort of what that is like on the INSIDE.

    Now this is VERY unofficial, and the doctor that looked at the scan spent less than 5 or 10 minutes on them and did the ‘quick glance’ only as a favor to Audie and so the actual ‘reading’ may be very different. But Audie seems to think that the 1 enlarged lymph node will mean that they will call for a PET scan to see if it lights up. She said it is in a very difficult spot to do a CT-guided needle biopsy like Deanna had (Audie assists with those all the time); and also a dangerous spot for surgery because of the kidney and aorta both so near the node.

    She also said that they see lymph nodes enlarged all of the time due to infection and inflammation and she won’t be surprised if they don’t try giving me some anti-inflammatory medications to try and calm down all of the inflammation I’ve got, and then do another CA125. The best case scenario would be if all of this is due to the inflammation, and if the inflammation is a delayed reaction to all of radiation I had or to something I picked up in Greece. If that could account for the rise in CA125 and all of the inflammation in my bowels and that node, and it ISN’T cancer, well,…what could be better?

    But I don’t know that yet. But at least that gives me some hope to hold onto until I meet with my gyn-onc on Wednesday or someone calls me to discuss the CT-scan.

    I'm thinking that maybe it’s premature to worry yet. It may not be cancer coming back at all. I’ll let you know when I get some more official feedback. But I am so happy to not have my WORST fears confirmed,.. at least not yet.

    Thanks again, everyone. It means so much.

    linda's ct scan

    linda,

    i never believed it was a reoccurence, and all the evidence points to no cancer; so as far as i'm concerned you are, indeed, still dancing with ned. i'm following your postings closely like the legions of others, and expect only good news. please keep up with us when you learn something new. we're all right here.

    as for me, i finished my 6 rounds of chemo yesterday, thank goodness, and will probably have only the brachy therapy, though not until my partner and i return from two weeks in kauai for rest and relaxation in a little cottage on the water. sitting on the linai having lattes, snorkiling in the ocean surrounded by a reef, swimming, walking along the sand, nothing sounds better to me. then back to radiation and having my port taken out asap. i've definitely decided to do it. i don't want the constant reminder, i don't want to keep it in as if i'm just waiting for a recurrence, and i don't want my body to have to fight this foreign object, plus the risks are clots and infections.

    luckily i've been able to go to work one week of each cycle (i'm a psychotherapist) which has been great for me, and good i think for my clients to see me, and see me look fairly healthy. i think my basically strong constitiution has allowed me to weather the chemo as well as i have. i know the upsc diagnosis is a very, very bad one; seems worse than ovarian, though i don';t know about that. a woman filmaker i know, who now lives in n.y. just did a flim callled "a horse is not a metaphor'', about her own struggle with ovarian cancer, stage 3 i think. her name is barbara hammer and she's about 70, and an old time radical feminist, avant guard film maker. this film is about an hour, and well worth watching, especially because she'd doing so well now. also, has garnered a number of awards. for anyone interested, i believe it's possible to view it on your computer.

    best as always to you, and everyone who reads this post, we all need a little good luck right now.

    maggie
  • maggie_wilson
    maggie_wilson Member Posts: 596

    linda's ct scan

    linda,

    i never believed it was a reoccurence, and all the evidence points to no cancer; so as far as i'm concerned you are, indeed, still dancing with ned. i'm following your postings closely like the legions of others, and expect only good news. please keep up with us when you learn something new. we're all right here.

    as for me, i finished my 6 rounds of chemo yesterday, thank goodness, and will probably have only the brachy therapy, though not until my partner and i return from two weeks in kauai for rest and relaxation in a little cottage on the water. sitting on the linai having lattes, snorkiling in the ocean surrounded by a reef, swimming, walking along the sand, nothing sounds better to me. then back to radiation and having my port taken out asap. i've definitely decided to do it. i don't want the constant reminder, i don't want to keep it in as if i'm just waiting for a recurrence, and i don't want my body to have to fight this foreign object, plus the risks are clots and infections.

    luckily i've been able to go to work one week of each cycle (i'm a psychotherapist) which has been great for me, and good i think for my clients to see me, and see me look fairly healthy. i think my basically strong constitiution has allowed me to weather the chemo as well as i have. i know the upsc diagnosis is a very, very bad one; seems worse than ovarian, though i don';t know about that. a woman filmaker i know, who now lives in n.y. just did a flim callled "a horse is not a metaphor'', about her own struggle with ovarian cancer, stage 3 i think. her name is barbara hammer and she's about 70, and an old time radical feminist, avant guard film maker. this film is about an hour, and well worth watching, especially because she'd doing so well now. also, has garnered a number of awards. for anyone interested, i believe it's possible to view it on your computer.

    best as always to you, and everyone who reads this post, we all need a little good luck right now.

    maggie

    p.s. multiple postings

    dear all

    i want to apologize for my posting before this one, that duplicated 4 times; my computer went haywire, and i have no idea why. i will be particularly careful in the future not to punch in the post more than once, even if it doesn't send right away.
    maggie
  • lindaprocopio
    lindaprocopio Member Posts: 1,980

    p.s. multiple postings

    dear all

    i want to apologize for my posting before this one, that duplicated 4 times; my computer went haywire, and i have no idea why. i will be particularly careful in the future not to punch in the post more than once, even if it doesn't send right away.
    maggie

    The sage continues: 2nd opinion to CT-scan slides
    What a roller-coaster day! AFTER my “NED” phone call from my chemo-onc, I called my DIL with the good news. I know she was happy for me, but I could hear the skepticism in her voice, as she’d seen my scans and that 1 little enlarged node. When we got off the phone, she called her doctor friend that gave the cursory look at my slides while I was still there, the one that said I’d probably need to get a PET scan to see what that lymph node was up to. It turns out this same doctor isn’t the one that gave the formal official Ct-scan slide review; someone else reviewed my scan slides and gave that NED report. My DIL’s friend was surprised at the NED report and said she’d pull my slides and really go over them as a second opinion. After she reviewed my slides, she added an addendum to my file noting the node she saw and recommending the oncology team carefully review my slides personally.

    I haven’t told Vic any of this. He is so blissfully relieved that I just want to give him a good night’s sleep and a chance to be happy a little bit longer. My chemo-onc may phone tomorrow about the 2nd opinion, and burst his bubble. Or he may wait and let my gyn-onc handle the mixed review when he sees me for my appointment Wednesday.

    It still may be nothing. It’s nice to know at least the one doctor thinks I'm NED, even if the other doesn't. And also good that I have other more cautious angels watching out for me just in case so they can get to the bottom of this.

    It’s like a soap opera, isn’t it? You can’t make up stuff this crazy!!
  • barb55
    barb55 Member Posts: 91

    The sage continues: 2nd opinion to CT-scan slides
    What a roller-coaster day! AFTER my “NED” phone call from my chemo-onc, I called my DIL with the good news. I know she was happy for me, but I could hear the skepticism in her voice, as she’d seen my scans and that 1 little enlarged node. When we got off the phone, she called her doctor friend that gave the cursory look at my slides while I was still there, the one that said I’d probably need to get a PET scan to see what that lymph node was up to. It turns out this same doctor isn’t the one that gave the formal official Ct-scan slide review; someone else reviewed my scan slides and gave that NED report. My DIL’s friend was surprised at the NED report and said she’d pull my slides and really go over them as a second opinion. After she reviewed my slides, she added an addendum to my file noting the node she saw and recommending the oncology team carefully review my slides personally.

    I haven’t told Vic any of this. He is so blissfully relieved that I just want to give him a good night’s sleep and a chance to be happy a little bit longer. My chemo-onc may phone tomorrow about the 2nd opinion, and burst his bubble. Or he may wait and let my gyn-onc handle the mixed review when he sees me for my appointment Wednesday.

    It still may be nothing. It’s nice to know at least the one doctor thinks I'm NED, even if the other doesn't. And also good that I have other more cautious angels watching out for me just in case so they can get to the bottom of this.

    It’s like a soap opera, isn’t it? You can’t make up stuff this crazy!!

    rollercoaster
    Linda- I have been out of touch for over a month- my mom was ill.She passed away on November 1. I went to Florida to be with her. I think I just couldn't handle her illness and cancer world so I didn't check the group till tonight. I am so sorry for the rollercoaster you are on right now. I so wish I could offer up something wise and wonderful- I understand you are in an awful place tonight. Breathe in breathe out and move on to a happier place soon- okay? Love, Barb
  • The sage continues: 2nd opinion to CT-scan slides
    What a roller-coaster day! AFTER my “NED” phone call from my chemo-onc, I called my DIL with the good news. I know she was happy for me, but I could hear the skepticism in her voice, as she’d seen my scans and that 1 little enlarged node. When we got off the phone, she called her doctor friend that gave the cursory look at my slides while I was still there, the one that said I’d probably need to get a PET scan to see what that lymph node was up to. It turns out this same doctor isn’t the one that gave the formal official Ct-scan slide review; someone else reviewed my scan slides and gave that NED report. My DIL’s friend was surprised at the NED report and said she’d pull my slides and really go over them as a second opinion. After she reviewed my slides, she added an addendum to my file noting the node she saw and recommending the oncology team carefully review my slides personally.

    I haven’t told Vic any of this. He is so blissfully relieved that I just want to give him a good night’s sleep and a chance to be happy a little bit longer. My chemo-onc may phone tomorrow about the 2nd opinion, and burst his bubble. Or he may wait and let my gyn-onc handle the mixed review when he sees me for my appointment Wednesday.

    It still may be nothing. It’s nice to know at least the one doctor thinks I'm NED, even if the other doesn't. And also good that I have other more cautious angels watching out for me just in case so they can get to the bottom of this.

    It’s like a soap opera, isn’t it? You can’t make up stuff this crazy!!

    This comment has been removed by the Moderator
  • barb55 said:

    rollercoaster
    Linda- I have been out of touch for over a month- my mom was ill.She passed away on November 1. I went to Florida to be with her. I think I just couldn't handle her illness and cancer world so I didn't check the group till tonight. I am so sorry for the rollercoaster you are on right now. I so wish I could offer up something wise and wonderful- I understand you are in an awful place tonight. Breathe in breathe out and move on to a happier place soon- okay? Love, Barb

    This comment has been removed by the Moderator
  • Ro10
    Ro10 Member Posts: 1,561
    barb55 said:

    rollercoaster
    Linda- I have been out of touch for over a month- my mom was ill.She passed away on November 1. I went to Florida to be with her. I think I just couldn't handle her illness and cancer world so I didn't check the group till tonight. I am so sorry for the rollercoaster you are on right now. I so wish I could offer up something wise and wonderful- I understand you are in an awful place tonight. Breathe in breathe out and move on to a happier place soon- okay? Love, Barb

    Barb so sorry to hear about your Mother
    My sympathy. It is hard to deal with cancer and an ill Mother. In peace and caring.
  • Ro10
    Ro10 Member Posts: 1,561

    The sage continues: 2nd opinion to CT-scan slides
    What a roller-coaster day! AFTER my “NED” phone call from my chemo-onc, I called my DIL with the good news. I know she was happy for me, but I could hear the skepticism in her voice, as she’d seen my scans and that 1 little enlarged node. When we got off the phone, she called her doctor friend that gave the cursory look at my slides while I was still there, the one that said I’d probably need to get a PET scan to see what that lymph node was up to. It turns out this same doctor isn’t the one that gave the formal official Ct-scan slide review; someone else reviewed my scan slides and gave that NED report. My DIL’s friend was surprised at the NED report and said she’d pull my slides and really go over them as a second opinion. After she reviewed my slides, she added an addendum to my file noting the node she saw and recommending the oncology team carefully review my slides personally.

    I haven’t told Vic any of this. He is so blissfully relieved that I just want to give him a good night’s sleep and a chance to be happy a little bit longer. My chemo-onc may phone tomorrow about the 2nd opinion, and burst his bubble. Or he may wait and let my gyn-onc handle the mixed review when he sees me for my appointment Wednesday.

    It still may be nothing. It’s nice to know at least the one doctor thinks I'm NED, even if the other doesn't. And also good that I have other more cautious angels watching out for me just in case so they can get to the bottom of this.

    It’s like a soap opera, isn’t it? You can’t make up stuff this crazy!!

    Linda try not to worry
    Sorry for your roller coaster day. I hope that the lymph node turns out to be nothing.
    Worry does not change anything other than rob you of time to enjoy yourself.

    I know what you mean about your husband being so stressed out. Mine was too when I got the news of my CA 125 going up. You feel so bad for them, that you are putting them through this stress. I wish I could make it better, but unfortunately we have no control over it. I am just so thankful that I have him here.

    I hope all goes well on Wednesday. Be thankful for those "cautious angels". In peace and caring.
  • california_artist
    california_artist Member Posts: 816 Member
    Ro10 said:

    Linda try not to worry
    Sorry for your roller coaster day. I hope that the lymph node turns out to be nothing.
    Worry does not change anything other than rob you of time to enjoy yourself.

    I know what you mean about your husband being so stressed out. Mine was too when I got the news of my CA 125 going up. You feel so bad for them, that you are putting them through this stress. I wish I could make it better, but unfortunately we have no control over it. I am just so thankful that I have him here.

    I hope all goes well on Wednesday. Be thankful for those "cautious angels". In peace and caring.

    Good Grief!
    All, this has been one torturous ride today. We're waiting on pins and needles. We're insanely happy. We're not sure if we're happy or not any more. Then Barb's sobering news.We all deserve a good night's sleep. Maybe tomorrow we'll wake up and this will have been a crazy dream and life will be good again.

    Barb, so very very sorry about your mom. Really sorry.

    Claudia

    Patricia, you've come a long way. Look at all your URL postings. And then there's the poetry. Love you.
  • barb55
    barb55 Member Posts: 91

    Good Grief!
    All, this has been one torturous ride today. We're waiting on pins and needles. We're insanely happy. We're not sure if we're happy or not any more. Then Barb's sobering news.We all deserve a good night's sleep. Maybe tomorrow we'll wake up and this will have been a crazy dream and life will be good again.

    Barb, so very very sorry about your mom. Really sorry.

    Claudia

    Patricia, you've come a long way. Look at all your URL postings. And then there's the poetry. Love you.

    thank you
    Thank you all for your kind words of condolence. My mom had lung cancer but that's not what caused her death. I was her cancer support group, she would have really benefitted from such strong honest women but the internet was not her thing. I am so lucky to have you in my life. When I was first diagnosed (in 2007) it was so lonely. Of course, we will need to change the name of this group at some point - How about the "We Used to Have Cancer But Now We are Just Chillin"Sisters?"
    By the way- in my photo I'm the old lady of 60 having fun with my daughter at a friends wedding.
  • lociee
    lociee Member Posts: 102
    barb55 said:

    thank you
    Thank you all for your kind words of condolence. My mom had lung cancer but that's not what caused her death. I was her cancer support group, she would have really benefitted from such strong honest women but the internet was not her thing. I am so lucky to have you in my life. When I was first diagnosed (in 2007) it was so lonely. Of course, we will need to change the name of this group at some point - How about the "We Used to Have Cancer But Now We are Just Chillin"Sisters?"
    By the way- in my photo I'm the old lady of 60 having fun with my daughter at a friends wedding.

    Linda
    Hi Linda - I haven't been on this site in a few weeks - I read all your messages and was amazed. You're right - it's a roller coaster! I've been through similar results lately and still don't know what's what! But I do know that I have radiation damage. Thickening of the rectal wall - which sounds like something you mentioned. Basically, my **** is killing me! I had a PET last week - my tumor "seems" inactive - tell that to the pain in my ****! The area around my viginal cuff (wherever that is) lit up - but they were not sure that meant anything???? I don't understand them. And I never can get two doctors to agree. Man.... they are just out there in unknown territory - doing the best they can. I just hope you are okay! Day by day - you'll get to wednesday - then you'll have some new info - and go day by day again. It may be a good idea to stop all the on-line research for a bit. Research can sometimes give us information that is not really accurate. Take care - I'll be thinking of you on Wednesday. Kiss your husband - have sex - and enjoy the sun.
    Mia
  • california_artist
    california_artist Member Posts: 816 Member
    lociee said:

    Linda
    Hi Linda - I haven't been on this site in a few weeks - I read all your messages and was amazed. You're right - it's a roller coaster! I've been through similar results lately and still don't know what's what! But I do know that I have radiation damage. Thickening of the rectal wall - which sounds like something you mentioned. Basically, my **** is killing me! I had a PET last week - my tumor "seems" inactive - tell that to the pain in my ****! The area around my viginal cuff (wherever that is) lit up - but they were not sure that meant anything???? I don't understand them. And I never can get two doctors to agree. Man.... they are just out there in unknown territory - doing the best they can. I just hope you are okay! Day by day - you'll get to wednesday - then you'll have some new info - and go day by day again. It may be a good idea to stop all the on-line research for a bit. Research can sometimes give us information that is not really accurate. Take care - I'll be thinking of you on Wednesday. Kiss your husband - have sex - and enjoy the sun.
    Mia

    Mia
    Hey, nice to hear from you. Because UPSC and other uterine cancers recur in the vaginal cuff-which is just referring to where they stitched the top of the vagina together after removing the uterus and other bits and pieces, and your's shows metabolic activity in the PET, I would highly recommend that you have someone of your doctors take an actual look up there with a very bright light. I have internal bright light exams every 4 months or so, and even though I have asked for a pap test, which I do get, my doctor assures me that he can actually see the evidence of cancer's return long before a pap comes back positive. It can show up as little white areas on or near the spot of closure. Actually, from what I've read, this cancer shows up on it's return most often in the vaginal cuff, so make someone look, okay? And, metabolic activity usually needs to be fairly large to show up on a PET so no dilly dallying. Call tomorrow and whine big time for an appointment. And yes, I do sound like your mother. My daughter is very ill and I've given up being tactful with her and just started telling her what needs to be done, otherwise, she doesn't do things cause she's just too down about the whole situation. This attitude has spilled over here I guess. So eat your veggies and go to the doctor!

    On a more positive note, PET will also show just a general infection, but in any case someone needs to actually look and see what's going on, and make sure they use a very, very bright light and a magnifier if possible.

    Claudia

    So sorry about the butt issues, they can be sooooooooooooooooooooooo annoying!
  • lociee
    lociee Member Posts: 102

    Mia
    Hey, nice to hear from you. Because UPSC and other uterine cancers recur in the vaginal cuff-which is just referring to where they stitched the top of the vagina together after removing the uterus and other bits and pieces, and your's shows metabolic activity in the PET, I would highly recommend that you have someone of your doctors take an actual look up there with a very bright light. I have internal bright light exams every 4 months or so, and even though I have asked for a pap test, which I do get, my doctor assures me that he can actually see the evidence of cancer's return long before a pap comes back positive. It can show up as little white areas on or near the spot of closure. Actually, from what I've read, this cancer shows up on it's return most often in the vaginal cuff, so make someone look, okay? And, metabolic activity usually needs to be fairly large to show up on a PET so no dilly dallying. Call tomorrow and whine big time for an appointment. And yes, I do sound like your mother. My daughter is very ill and I've given up being tactful with her and just started telling her what needs to be done, otherwise, she doesn't do things cause she's just too down about the whole situation. This attitude has spilled over here I guess. So eat your veggies and go to the doctor!

    On a more positive note, PET will also show just a general infection, but in any case someone needs to actually look and see what's going on, and make sure they use a very, very bright light and a magnifier if possible.

    Claudia

    So sorry about the butt issues, they can be sooooooooooooooooooooooo annoying!

    Thanks Claudia
    I have two appointments coming up in the next two weeks. I'll make sure to mention the very bright light - I mean DEMAND the very bright light. I'll also eat my veggies - thanks. How old is your daughter? Mine will not take any advice from me no matter how much I try to take charge.
  • bonniesue
    bonniesue Member Posts: 124
    linda
    My thought and prayers are with you and I am glad your DIL can help in her department to make sure you are NED. Always helps to have a second pair of eyes to be sure all is ok.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980

    Linda ! OMG
    Remember me, Linda? I'm Linda aka Cookie. I have not been on this site for a month as i've been taking care of grandaughter, daughter and mom who had that hysterectomy at 85. AND have been in the process of remodeling so i've been pre occupied. Something told me to check in here tonite no matter what. I wanted to make sure Ro and you and so many others are doing well. I am in total shock with the radical chemo and radiation you've had. I just cannot believe it's back. I do NOT believe it and will pray for a good outcome. I guess a CA125 is not enough to go on. I wanted to check on Deanna and the many others i've grown fond of. Please know i am thinking of you. You are such an inspiration to others but i surely can understand your shock. Hang in there. I know that's easier said than done. I sooooooooooooo wish you the best. You are a good friend to all here. You have been so much help for me with my 85 now 86 yr old mom. Take care, and i will check in now daily to see how you and the other beautiful women are doing!!
    My hugs go out to you Linda.

    Hi, COOKIE! (aka Linda)!! Soooo good to hear from you!
    Thanks so much for checking in at just the right time when I need my 'peeps' all around me! I'm honestly okay. I woke up content this morning, almost as if I was counting my blessings in my sleep, feeling at peace with the world, with MY world. I love Thanksgiving even more than Christmas and this weekend started my Thanksgiving preparations, a happy nostalgic time for me to remember myself as a little girl, and as a young mother, and now as a grandmother, repeating these same annual tasks in preparation for the feast. So many happy memories, and a very happy memory made this weekend for my own grandchildren, baking crescent rolls with me.

    Life is good!