Introductory Post Walk-Through

[sharon]

I need you to let me know if you have a problem and exactly what you were doing when that problem occured.

Note: Anything you see in the forums that is highlighted in blue letters is a 'clickable link'. If you place your mouse on it and click, you will be taken to a new page.

1. When you go to the Forum section of the website:
http://www.rare-cancer.org/forum/

You will see a message toward the top right of the page that says either:
Login
Or Logout, with your Forum username in brackets.
If yours says Login, then you are not logged in. Please login by either using the Login at the top of each forum page, or by clicking on this link --> Forum Login

Enter your Forum username and password. Now the message at the top right of the page should change to reflect your username.

2. Now you are logged in and ready to visit your forum. If you do not know which private Forums you have access to, you can see them by clicking on the --> User Control Panel link at the upper left of the page. That will open up a new page that shows your profile information.

At the top of that page, you will see some Tabs. One will say --> Usergroups. Click on that tab and a new page will open listing all the Groups of the Forum. They are broken down by Membership groups (ones you belong to) and non-Membership groups. Look under your Membership groups, and note which private Membership groups you belong to. You will have access to the corresponding Forums for that group.

3. Once you know which private forums you have access to, you will want to go to that corresponding Forum to enter your introduction. Simply click on the yellow Forum link or the Forum HOME link at the upper left of the page. A new page will open up showing you all the forums. Click on the private Forum title for the one you want to enter. A new page will open up showing all the topics posted to your forum. Toward the top, you will see a topic listed that says "Introduce Yourself". If you click on that topic a new page will open up showing you all the introductions that have been made on this forum. You can browse through them, but I strongly advise that you enter your own introduction. To do this.....

4. At the upper left of that page, you will see a 'button'' that says 'postreply'. Click on it and you will be taken to a new page that will allow you to enter your own introduction to the group. To reply to a post, you do not need to enter a Subject line, just go to the large box. This is the Message Body. Click your mouse inside that box and enter your introduction. When you are happy with what you have written, scroll down that page and click the 'Submit' button.

That's it!

If you have any questions or problems, you may enter a reply post here and I will help you, or you can use the --> Contact Admin link above to email me directly. If you choose the email option, you MUST look for the reply in your Inbox, Bulk, or Spam folders.

[mp327]

Hi Sharon--

I found these instructions easy to follow.

Martha

[Mayday]

HI

'm having a problem introducing myself on the anal cancer forum. When I open the forum page up I do not get a list of topics but a list of members and no button for introductions.

[mp327]

Hi Mayday--

Click on "Forum HOME" above in the light blue area, which will take you to a list of all of the forums. Scroll down to "Anal Cancer" and click, which will take you to the Anal Cancer Forum. Click on the thread titled "Introduce Yourself" and post your introduction. Hope this helps.

Martha

[martha_ligon]

I have searched diligently and cannot seem to find the "introduce yourself" area in the anal & rare rectal cancers forum. Getting frustrated. Please advise. Thanks! Martha Ligon

[sharon]

I will also send this to you in an email. Go to this list of topics for the Anal Cancer Forums:
viewforum.php?f=121

Go past that first section (Announcements) and look in the second section. The very first topic is the "Introduce Yourself" post. Click on those words and you will see the very first page of the Introduce Yourself posts. There are 55+ pages of them. At any time, you can click on the "POSTREPLY" button at the top left of any page and enter your own post. Don't forget to click on the "Submit" button at the bottom of the message box to complete your post. Hope that helps.

[skipjack]

Diagnosed bout 2 wks ago with malignant phyllodes tumor...going in next week for that wide range excision..for people that have been thru this ....how worried should i be???????...tumor was around 6cm when they removed it 2 weeks ago and the surgeon called me a week later with the final diagnosis.....i cant seem to find too much medical info on the web....I am 59 and I am good health except for this. Lol......ok thank u in advance for any help.

[cutenoelle]

Hey, there's almost no one on this board but I have been through this mess we call Phyllodes, still going through it with a new cancer trying to develop but that's another story lol. What do you want to know? Other than it's highly unpredictable and has a high recurrence rate. Glad you are going back in with wide margins :)

[ronda54]

Hello. thanks for letting me join. I was diagnosed on 4/1/2010 with primary peritoneal carcinoma serrous Papillary carcinoma. I was stage 3C. I am also BRCA 1+. I had breast cancer in 1996. I came to this site to ask a few questions. I had a full hysterectomy and ovaries an tubes removed. My omentum was also removed too. I am told this will recur an was wondering if anyone has recurred and what the signs were? I also have neuropathy in my hands an feet from chemo and suffer chemo brain. I am 4 years NED.
Thank You,
Ronda

[nyannarella]

Hi all,
My name is Nancy and I am 48yrs old. I have recently been diagnosed with high grade salivary gland mucoepidermoid carcinoma. I have been to a specialist at Penn Medicine for evaluation. He said this was curable .The cancer has not spread but there may be some lymph node involvement. I am to have a radical surgery in a few weeks to remove the tumor which involves the floor of my mouth, tongue and some of the neck. I will also get a neck dissection and reconstructive surgery the same day. When I left the office I actually felt relief of some kind. Except 2 days later I found out my EKG can back abnormal and I have to be cleared for surgery. I have never had any heart problems and I just had surgical biopsy 2 weeks ago and all was fine. I also made the mistake of looking up my scans and labwork results. The pet scan said there was "minimal widespread diffuse FDG uptake through both breasts. Not suggestive of malignancy." What if the specialist missed this or had not received the biopsy lab results of "high grade" before our consultation. His office did call for release of my specimen for their pathologist to look at. What if he changes his mind and says the whole thing is a no go. I will be devastated, I am scared to death to receive that call. I can't eat,sleep and I can barely work everyday I am such a wreck. Anyway that is an update about my so called life. I am glad to be able to maybe get some input and read others stories that are like mine. I know everyone here knows what I am feeling.

[sharon]

Your 'uptake' issue is what is referred to as an incidental finding. It is not something that they were looking for, but something that was found in an area no where near the original cancer site. There are pitfalls in PET scan imagining, using FDG and false positives are not unusual. You may want to read more here:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4195840/

Breast tissue is very complex and there are some pitfalls to PET scans and breast tissue. I would go over the report, in detail with the doctor. If you have not had other forms of imaging, along with the PET scan, you may want to ask for them to verify the PET scan results. PET scans are a little complicated and the results are often only as good as the education of the doctor or technician reading the scan.

Don't get too excited. You are in the beginning stages of your surgical workup. Be prepared to ask a LOT of questions. You brought up some very good ones in your post, but sit in a quiet room and consider more things you would like to know. Let us know how it goes.

[Ubri]

Hi Everone..My problem is I've been diagnosed with Cholangio Carcinoma,gall bladder cancer.Is any one dealing with this problem? They told me I had 4th stage liver cancer 3 years ago..Iwent for many ultra sounds then c.t scans and Mri's and now they say it's bille duct cancer .They advise chemo injection..It is not a cure.Has anyone done this? I don't know what to do..ask me anything and I can answer back.. They say 6 months to 5 years but I've already done 3 years.I am not jaundice.My weight is 228 and I am 6'.My big problem is tiredness..Has any one heard of taking apricot kernels.or does anyone know of any type of natural cures.Wow I'am 58 and just retired ..I can't believe this .Looking forward to reading some of the cases..I know there's a Cure!!

[Syellicen]

Hi everyone, i'm Syelli, 29 years old, I have been diagnosed hemangiopericytoma of ovary last april.
I'm from Indonesia Asia and i'm sorry if my English not good. You can email me syellicen@gmail.com
I had radical hysterectomi two week ago. And yes i'm still single and no children, fufufufu..
But it's okay, i wanna survive and do the best.
Thankyou so much. Glad to join this group...
Syelli

[Kc56]

Hi
My husband had a left nephrectomy and bladder cuff two weeks ago . Is home now recovering from op which was performed laparoscopically.
Back next week for cystoscopy and hopefully catheter removal. Know he will be getting regular checks from now on.
He is just coming to his 5 year clear after having his left lung removed due to adenocarcinoma nscl cancer so has one success under his belt. Anyone out there who is 5 years on from similar kidney cancer who can tell us what to expect

[sharon]

Hi
My husband had a left nephrectomy and bladder cuff two weeks ago.

My first question is did they do a radical nephrectomy, where the entire left kidney was removed? If yes, there are long term effects and considerations based on that. First, you want to make sure that blood and urine counts are monitored to make sure that the other kidney is able to 'take the load' of the filtration. You will also want to monitor blood pressure to make sure that the loss of the kidney does not effect that. And, most importantly, you will want to have some guidance on diet. The object is to keep that kidney healthy.
I am not answering as a kidney cancer patient, although I am a '3 time hitter' with cancer. I am answering as a person with chronic kidney disease. The best thing I have done for myself is to stay connected to a kidney specialist and get some guidance from Davita on how to keep my kidneys functioning as best I can.