Stage III Grade b found on biopsy angry rash left almost covering my body with no explanation from

tceleste
tceleste Member Posts: 10
in Ovarian Cancer #1
I finally had the surgery three months after finding an adnexal mass incidentally on an MRI of the hips for severe arthritis. Planned laparoscopy turned into laparotomy with an almost six hour surgery. The doctor found cancer in both ovaries, the omentum and positive cells in pelvic wash. None of the lymph nodes were involved. I would prefer chemo tomorrow but they are waiting a month. The tumors are aggressive, papillary serous and had grown not quite 3 cm in three months so I want fast chemo. But this whole adventure has been one of finding the tumor by accident, seeing the surgeon after a month's wait and the surgeon leaving for vacation for a month before operating on me. I an left to do the best I can.

Anyway I developed a horrible rash over two-thirds of my body sparing my face and legs up to the knees. They would not call in a dermatology consult or a rheumatology consult-I have lupus- because "the dermatologist would put you on steroids which you do not need while healing" It is wonderful to know that my surgeon can read another doctor's mind. I just wanted to find out what the red ugly itching rash is. They discharged me with it all over me. I am seeing my rheumatologist Monday (this is Saturday) but I am shocked that I would not be allowed to see a dermatologist before leaving.

At this point my main feeling is being grateful that the MRI was done so that we found this early as we did but since the mass was so small when it was found, everyone was surprised that it had gone to stage 3 already.

Just wondered if other people had a small mass (5 cm) that had advanced to a rapid stage III and if anyone has a rash like I do.

Comments

  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #2
    Fast
    I did not have a scan at the first sign of symptoms, but an ultrasound showed only a 5 cm cyst on my ovary and a thickened endometrium and a pelvic exam was normal. Don't ask me why EVERYONE ignored the cyst, but they did a D&C (sent the tissue to pathology and it was normal) and a follow up ultrasound, which showed the cyst had reduced to 2 cm, and sent me on my way. I complained of pain in the area below my naval when I had gas, but all the experts said it was just scar tissue. Seven weeks after my follow up ultrasound, I went back in saying things were just really not right. A pelvic exam indicated my "uterus" had grown from 7 cm to 10 cm and an ultrasound showed that there were tissues all over that didn't belong there. The CT scan was the final indicator that it was ovarian cancer. I had surgery 2 1/2 weeks after the CT scan, and was staged as IIIC papillary serous adenocarcinoma.
    I understand your wanting to get to chemo right away. All I wanted was to get the darned stuff out of me. Has your CA-125 dropped since surgery? Mine was 4,600 at diagnosis and was 290 after surgery. So, clearly the surgeon got a lot of it out. Yet, I was still considered suboptimal. I started chemo three weeks later and was NED at the end of treatment. You really do need to let your body recover from the surgery before venturing through chemo. Even though the initial cancer was aggressive, a few weeks isn't going to make the difference, in my opinion, as to how well the chemo does its job. Just let your body heal.
    Never had to deal with the rash. Have they said anything about shingles? I hope your doctor can get to the bottom of that soon.
  • carolenk
    carolenk Member Posts: 907 Member
    #3
    Tethys41 said:

    Fast
    I did not have a scan at the first sign of symptoms, but an ultrasound showed only a 5 cm cyst on my ovary and a thickened endometrium and a pelvic exam was normal. Don't ask me why EVERYONE ignored the cyst, but they did a D&C (sent the tissue to pathology and it was normal) and a follow up ultrasound, which showed the cyst had reduced to 2 cm, and sent me on my way. I complained of pain in the area below my naval when I had gas, but all the experts said it was just scar tissue. Seven weeks after my follow up ultrasound, I went back in saying things were just really not right. A pelvic exam indicated my "uterus" had grown from 7 cm to 10 cm and an ultrasound showed that there were tissues all over that didn't belong there. The CT scan was the final indicator that it was ovarian cancer. I had surgery 2 1/2 weeks after the CT scan, and was staged as IIIC papillary serous adenocarcinoma.
    I understand your wanting to get to chemo right away. All I wanted was to get the darned stuff out of me. Has your CA-125 dropped since surgery? Mine was 4,600 at diagnosis and was 290 after surgery. So, clearly the surgeon got a lot of it out. Yet, I was still considered suboptimal. I started chemo three weeks later and was NED at the end of treatment. You really do need to let your body recover from the surgery before venturing through chemo. Even though the initial cancer was aggressive, a few weeks isn't going to make the difference, in my opinion, as to how well the chemo does its job. Just let your body heal.
    Never had to deal with the rash. Have they said anything about shingles? I hope your doctor can get to the bottom of that soon.

    Drug allergy rash
    Not knowing very much about your case, I'm still gonna guess you have a drug rash. I would find out what kind of antibiotic was given post-op and stay away from it in the future. Let's hope you aren't allergic to your pain meds but that is on the list of the usual suspects, too.

    I remember your earlier post & am glad you didn't go for the laproscopy. I am sorry you are in the club now & especially in the papillary serous club (like me, Tethys and so many others). This type of OVCA moves fast & so chemo usually knocks it down fast, too. You really do need time to heal after a debulking surgery.

    Since you are in the SLE club too, you might be interested to hear that the latest naturopathic approach for ALL autoimmune conditions is to treat gut dysbiosis. Google "dysbiosis treatment" & you may want to work on that while you are waiting for chemo.
  • tceleste
    tceleste Member Posts: 10
    #4
    Tethys41 said:

    Fast
    I did not have a scan at the first sign of symptoms, but an ultrasound showed only a 5 cm cyst on my ovary and a thickened endometrium and a pelvic exam was normal. Don't ask me why EVERYONE ignored the cyst, but they did a D&C (sent the tissue to pathology and it was normal) and a follow up ultrasound, which showed the cyst had reduced to 2 cm, and sent me on my way. I complained of pain in the area below my naval when I had gas, but all the experts said it was just scar tissue. Seven weeks after my follow up ultrasound, I went back in saying things were just really not right. A pelvic exam indicated my "uterus" had grown from 7 cm to 10 cm and an ultrasound showed that there were tissues all over that didn't belong there. The CT scan was the final indicator that it was ovarian cancer. I had surgery 2 1/2 weeks after the CT scan, and was staged as IIIC papillary serous adenocarcinoma.
    I understand your wanting to get to chemo right away. All I wanted was to get the darned stuff out of me. Has your CA-125 dropped since surgery? Mine was 4,600 at diagnosis and was 290 after surgery. So, clearly the surgeon got a lot of it out. Yet, I was still considered suboptimal. I started chemo three weeks later and was NED at the end of treatment. You really do need to let your body recover from the surgery before venturing through chemo. Even though the initial cancer was aggressive, a few weeks isn't going to make the difference, in my opinion, as to how well the chemo does its job. Just let your body heal.
    Never had to deal with the rash. Have they said anything about shingles? I hope your doctor can get to the bottom of that soon.

    Thanks for your info
    My Ca-125 was 19 at the time of the mass found and at the time of the last blood work done about a week ago so we cannot use it for an indicator. No one mentioned shingles.I just think they did not want to deal with anything outside their specialty and did not want steroids to mess up my healing wound. I still have a red angry rash and it is itching terribly. I have a cream with metasone on the end so I guess that is steroid and I take Benedryl every 4 hours. I also developed asthma after surgery so I think this all may be allergy and not lupus.


    thanks so much.
  • tceleste
    tceleste Member Posts: 10
    #5
    carolenk said:

    Drug allergy rash
    Not knowing very much about your case, I'm still gonna guess you have a drug rash. I would find out what kind of antibiotic was given post-op and stay away from it in the future. Let's hope you aren't allergic to your pain meds but that is on the list of the usual suspects, too.

    I remember your earlier post & am glad you didn't go for the laproscopy. I am sorry you are in the club now & especially in the papillary serous club (like me, Tethys and so many others). This type of OVCA moves fast & so chemo usually knocks it down fast, too. You really do need time to heal after a debulking surgery.

    Since you are in the SLE club too, you might be interested to hear that the latest naturopathic approach for ALL autoimmune conditions is to treat gut dysbiosis. Google "dysbiosis treatment" & you may want to work on that while you are waiting for chemo.

    I agree with drug rash
    I think so too that is is all allergy and explains a lot of symptoms. Thanks for giving me something to work on. I will find out what antibiotic I was given and I will look up dysbiosis treatment.

    Thanks again
  • mopar
    mopar Member Posts: 1,972 Member
    #6
    HELLO
    I'm sorry to hear about your situation. Is your doctor and gynecologic/oncologist? I think we all agree on this board that have that type of specialist is very important. I agree also with the other ladies that a little break till you heal up a bit is better before jumping into chemo. And as you can see, there are some really positive and hopeful testimonies here.

    Fighting Lupus through all of this is additional load on your immune system. I would want to be sure that your rheumatologist consults with the oncologist before moving forward. And they never should have let you go home with that rash before determining what it is. I agree it may be from the antibiotics from your surgery. But it is definitely important to find out so that you can avoid this in the future.

    Sending (((HUGS))) and prayers,
    Monika
  • tceleste
    tceleste Member Posts: 10
    #7
    mopar said:

    HELLO
    I'm sorry to hear about your situation. Is your doctor and gynecologic/oncologist? I think we all agree on this board that have that type of specialist is very important. I agree also with the other ladies that a little break till you heal up a bit is better before jumping into chemo. And as you can see, there are some really positive and hopeful testimonies here.

    Fighting Lupus through all of this is additional load on your immune system. I would want to be sure that your rheumatologist consults with the oncologist before moving forward. And they never should have let you go home with that rash before determining what it is. I agree it may be from the antibiotics from your surgery. But it is definitely important to find out so that you can avoid this in the future.

    Sending (((HUGS))) and prayers,
    Monika

    would not consult with any other specialty
    I asked for a rheumatology and orthopedic consult as I wanted to know if I could start back on methotrexate, which had been stopped when the mass was found on a hip MRI. They refused to. It was a teaching hospital and half said I could go back on methotrexate and the other half (of residents in total 8)declined to answer. I asked for a dermatology consult and as I said in an earlier posting they would not do that because they would only give me steroids which I cannot have while healing. So what I do is see my rheumatologist tomorrow to see if she will help me plan the management of the arthritis or if she defers to my gynecological/oncologist who deferred to her. I may be the only person who cannot get her doctors to communicate. I did get them to promise to send them a copy of whatever they wanted to say about my surgery. I may have to go to a dermatologist myself as the rash is still here. I have a severe spinal stenosis at L4-L5 and spondylolisthesis with moderate scoliosis so I had wanted them to just talk to the orthopedist about my having to stand on my head and how they might be careful when moving me around but that did not happen either. The orthopedic rehab person I see is a doctor in this same teaching hospital so it would have only been a phone call since they all have the same access to my records. My surgeon called me one day before surgery and asked if there was any reason she could not bend my legs. I had no idea what she meant and told her my orthopedist could tell her that. Anyway excuse me for going crazy here.

    I am just going to do the best I can and hope for the best. No more requests for consults or anything else. Just get me the chemo and get me through it and I will be happy.
  • JoAnnDK
    JoAnnDK Member Posts: 275
    #8
    tceleste said:

    would not consult with any other specialty
    I asked for a rheumatology and orthopedic consult as I wanted to know if I could start back on methotrexate, which had been stopped when the mass was found on a hip MRI. They refused to. It was a teaching hospital and half said I could go back on methotrexate and the other half (of residents in total 8)declined to answer. I asked for a dermatology consult and as I said in an earlier posting they would not do that because they would only give me steroids which I cannot have while healing. So what I do is see my rheumatologist tomorrow to see if she will help me plan the management of the arthritis or if she defers to my gynecological/oncologist who deferred to her. I may be the only person who cannot get her doctors to communicate. I did get them to promise to send them a copy of whatever they wanted to say about my surgery. I may have to go to a dermatologist myself as the rash is still here. I have a severe spinal stenosis at L4-L5 and spondylolisthesis with moderate scoliosis so I had wanted them to just talk to the orthopedist about my having to stand on my head and how they might be careful when moving me around but that did not happen either. The orthopedic rehab person I see is a doctor in this same teaching hospital so it would have only been a phone call since they all have the same access to my records. My surgeon called me one day before surgery and asked if there was any reason she could not bend my legs. I had no idea what she meant and told her my orthopedist could tell her that. Anyway excuse me for going crazy here.

    I am just going to do the best I can and hope for the best. No more requests for consults or anything else. Just get me the chemo and get me through it and I will be happy.

    rash from wash
    I got a horrible rash the day I was released from the hospital after my hysterectomy. Turns out I was allergic to the antiseptic body wash that is splashed all over you before surgery. I was started on steroids and they worked quickly. Hope you are doing better.

    J

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