cancer question : pre Oncologist

LlovesD

My fiancés story

Hi all. This is my first post here. I am very upset and anxious about what happened with my fiance. After a few months of IBS symptoms, he developed a very large hemoriod from straining. After going to a useless Family Practice Dr. for relief from the hem., I got him to go see a GI surgeon to remove this painful hemorid that wasnt going away. This past Friday he went and she had to administer General Anesthesia to removed the hemoroid. After surgery she told him that there is cancer in the lower colon/anus area and that he had to see an Oncologist. I went to stay with him Friday night. He was able to urinate a small amount that night. The next morning he could NOT urinate and I took him to the ER late morning Saturday. OMG, they could not get the cathedor in. 7 different nurses tried and he was in such pain. They had to get the oncall Uroligist there. He finally arrived and got things moving. After this LONG story I'd like to say what was even more upsetting. The PA and nurses in the ER made it seem like there was a scary reason that the cathedor wouldnt go in. I'm thinking cancer in in the prostate and anus. Then I asked the PA what the GI surgeons report said about her findings. He talked to her and told us that her report reads that it's a 'circumferential rectal tumor' not obstructing the anus completely. I spoke with him without my fiance listenng and he implied that it is pretty much fatal. I'm so upet and overwhelmed. I'm terrified to meet with the Oncologist now. He has yet tp get the CT scans and pathoogy. Does anyone know aboit this type of cancer? Please help.

Lisa

Jane s

Wait to talk to oncologist and/or surgeon

Lisa,  you poor thing,  please don't panic.   Don't go by what the ER doctor says.   Your fiance needs to be checked by an oncologist and then perhaps a colo rectal surgeon.   The ER doctor is not the doctor to give you any kind of prognosis.  Cancer treatments are very effective these days,   and if it's anal cancer,  it's highly curable.   

I once went to the ER with ovarian pain , they told me I had chlamydia,  turns out it was a cyst.  

mp327

Lisa

An oncologist is the doctor who can sort this out and order the correct testing to get a correct diagnosis.  Was the surgeon's diagnosis of cancer based on visual findings or a biopsy?  Get more information before making any presumptions about prognosis.

eihtak

Lisa...

Hi, I am so sorry for what sounds like a nightmare in healthcare! It should not be this way. As others have said, try not to let your minds jump to crazy places and do get a diagnosis based on more thorough testing.

I have been lucky to have some really good experiences in the ER but.....at one time an ER doctor told us that he was quite sure my husband had lymphoma cancer (at that time he was in fact sick, but not with that) ... The doctors in the ER are generally not specialist in diagnosing cancer nor are they qualified to give any prognosis. Please keep us posted as you proceed and know you will both be in my thoughts and prayers.

katheryn

LlovesD

mp327 said:

Lisa

An oncologist is the doctor who can sort this out and order the correct testing to get a correct diagnosis.  Was the surgeon's diagnosis of cancer based on visual findings or a biopsy?  Get more information before making any presumptions about prognosis.

visual i think

visual i think

LlovesD

Thank you all. It was not the

Thank you all. It was not the ER Dr. It was what the GI surgeon's described in her 'surgery report'. However, I dont think a pathologist has seen the biopsy yet. My F. is trying to get CT Scans today or tomorrow and then we go to the Oncologist. Trying to find the best in the Denver area. I am jumping the gun it's just that i'm so scared. I pray that Anal cancer IS really treatable even past stage II.

 

Lisa

Ohmy

Hi Lisa, welcome to our group

Hi Lisa, welcome to our group.  Many of us here had anal cancer that was misdiagnosed as hemoroids by various doctors.  Myself included.  I was diagnosed with Stage 3 anal cancer in January 2017.  I thought I was going to die.  I did the treatment and here I am one year later doing fine.  It's amazing what they can do these days.  Try not to spend too much time worrying and save your energy for the big battles.  We are all here for you.

eihtak

LlovesD said:

Thank you all. It was not the

Thank you all. It was not the ER Dr. It was what the GI surgeon's described in her 'surgery report'. However, I dont think a pathologist has seen the biopsy yet. My F. is trying to get CT Scans today or tomorrow and then we go to the Oncologist. Trying to find the best in the Denver area. I am jumping the gun it's just that i'm so scared. I pray that Anal cancer IS really treatable even past stage II.

 

Lisa

Lisa....

It is, it "really" is....it is not fun and it can be extremely painful, but keep the faith, it IS treatable!

katheryn

LlovesD

Ohmy said:

Hi Lisa, welcome to our group

Hi Lisa, welcome to our group.  Many of us here had anal cancer that was misdiagnosed as hemoroids by various doctors.  Myself included.  I was diagnosed with Stage 3 anal cancer in January 2017.  I thought I was going to die.  I did the treatment and here I am one year later doing fine.  It's amazing what they can do these days.  Try not to spend too much time worrying and save your energy for the big battles.  We are all here for you.

Thanks 'Oh My' !!!

Wow, that's good news. He's had a good attitude so far. (It's only been 4 days since we found out.) Tonight however he was talking about not wanting to live a life that is 'low quality'. He means being unable to do the things he loves like playing golf, traveling, working at his sales job, having a sex life. I guess we hear stories about actually loosing ones anus. That scares him of course!! I'm thinking... lets save your life first, Donald. I want you here. He is so active though I dont want him to be miserable. 

We DID get the CT Scans all done today and they said that the radiologist will read them and get them to the Dr tomorrow. (I'm so glad I was there with him, he was nervous and I held his hand.) They will then have pathology, surgeon's report and the CT's. That means we will see the Oncologist Wednesday I hope. Maybe even tomorrow if they can get us in. 

Your story is very encouraging...thanks for the 'welcome' and it feels good to have you guys and gals here for us. I hope and pray that we can return the favor some day to newcomers. 

 

Lisa

Msmoxie

another sufferer's opinion

Hello LlovesD,  I too am sorry to hear of the preliminary diagnosis and the nightmare in the ER.  I was diagnosed with squamous cell carcinoma of the anus and rectum Aug. 2017 ... I was not having symptoms at all then an out of the blue fecal incontinence episode... I knew something was wrong.  Once I had the colonoscopy and the biopsy came back and my doctor said there was only one way to treat this....I started researching everything I could in the professional journals ... including NIH reports and cancer treatment center websites so I would know as much as possible to assist in my personal decisions.  I am sixty years young but have multiple health problems from being on the road 50K miles a year for thirty years of my life.  I also do not do well with numerous common drugs and my radiation oncologist and my primary physician are both understanding and bluntly honest with me regarding the treatment regimen they would do with my stage 3a SCC.  So... that said... I am now seven months post-diagnosis taking the wait and see approach and only using palliative care at this time.  I am the person in my family that can drop what I am doing and go help... in October after the hurricane in FL I had to fly to Indiana to take my Mom back to FL... then in January I was needed in Florida to help with my Mom and I am still here ... until May.  Then I go back to NJ for more consultations and further testing.  Other than the fecal incontinence (because the tumors are on my sphincters)... I am not in pain, I work my contracts here in FL (travel to perform microscope repairs and maintenance all over the state)... I help with my Mom, the shopping, the housework etc.

Like your fiance says... Quality of life is very important to me.  I finally got word of approval that I can go for consultation at Memorial Sloane Kettering... the number two cancer treatment center in the US.  Do study everything you can so you know what is important to ask about.  And if you don't sense that your doctors have a heart and soul find another one.  I did not like the attitude and the anger that I saw in my gastroenterologist when I disagreed with him so I fired him and found a more compassionate and understanding one.   And know that everyone here is sending strength and positive energies your way.

Moxie

 

mp327

Lisa

As mentioned above, many of us who have had anal cancer went back to doing all of the things we used to do prior to having cancer.  I can understand your concerns, but it is true--my life has been just as full as it was before.  I will be a 10-year survivor this year and have done many things I thought I could never do, such as run a marathon and other many races.  My husband and I enjoy cycling and I was worried that my rear end would never be able to tolerate that again, but I had no problems.  We take several road trips every year to go to car shows, we've gone to the beach, and done lots of other fun things.   Please let us know what the doctors have to say.  I am sending good thoughts.

Ohmy

I think my life is better

I think my life is better than it was before my diagnosis and treatment.  I have a greater appreciation of life and the people I love.  I take better care of myself and I get plenty of rest.  I also travel for work and I am looking forward to my trip to New Orleans in two weeks.  I also have my husband and a three year old granddaughter.  I want to stay alive and active as long as possible for them.

LlovesD

)))

That's great Ohmy! I hear that a lot. People get through this and realize how precious life is. That is really a wonderful outcome from such a terrifying experience.

Like I said in my previous email, the CT's were done and read yestaerday afternoon. It's now almost 24 hours later and we havent heard when we will be seeing the Oncologist for his diagnosis / treatment etc. Hmmmm... You think the surgeon's office would call to let him know. 

Lisa

LlovesD

URGENCY

Hi all-

We were waiting to see my fiance's Oncologist this week since he had his CT's done yesterday. They called him just now and we can go in tomorrow at 10:45 or Friday at 10:45. Really????? Where is the sense of urgency? Its a 1.5 hr appointment. They have all they need and will give us a diagnosis, treatment etc! I don't suppose lack of urgency is a good sign? They probably are just so used to dealing with this. 

SO... our appointment is tomorrow. OMG, I hope its really treatable. Please pray/send healing thoughts for Donald G. in Denver.

Bless all of you.

Lisa

eihtak

Lisa...

Hi, I'm glad you have an appointment to get a plan of action in place tomorrow. Its been over 7 years since I was first diagnosed so some details have (fortunately) become a bit of a blur. 

I think your perception of a lack of urgency is common but also something to not be alarmed about. Many people with anal cancer spend a year or more with symptoms and/or a mis-diagnosis before actual treatment plans are in place, AND still go on to have completely successful outcomes. It seems the urgency on some cancers does vary and we may be lucky to have just a bit of leeway here. That being said...the earlier treatment begins is still always best so glad you are getting in right away.

I live in Wisconsin and just returned from a spur of the moment road trip with my daughter and grandsons to Colorado for spring break. We had never seen the mountains there before and I am still in awe. We spent only a few days between Denver and Colorado Springs and were so blessed to have beautiful warm sunny weather. I can't stop thinking about the feeling I had when there...it truly is a special place and I hope to return again soon.

Donald (and you) will be on my prayer list for a swift healing plan followed by health and happiness as you move forward.

katheryn

LlovesD

diagnosis - sort of??

Hi All,

My Fiance got a call from the surgeon who found the cancer telling him that his cancer is called Squamous Cell Carcinoma. She saw the pathology and said it's stage II. We were told his CT scans were clear. It's a skin cancer that presents in the anus opening. He has since seen the radiologist, (yesterday.) He was told that he'd have 2 chemo treatments and 5-6 weeks of 15 minutes per-day radiation. We felt blessed because we thought it would/could be a lot worse. His cure rate is supposedly 80-90%. Return rate of 25% which i thought was high.

However.... once we saw the Chemo-Oncologist yesterday late afternoon I was taken a little aback. The Oncologist was not someone I would use if I was in my fiance's position. He had a crappy bedside manner. First of all he called it Anal cancer. I said that I thought it was SKIN cancer that's in the anus wall. He didn't give me a clear answer. Then he said the report mentioned a thickening of the bladder wall. He said he doesnt know what that means. He's been doing this for 45 years  and he couldnt give us any ideas of what that could mean??? My fiance has had a catheter in since this past Saturday. His surgery was Friday and Saturday we had to go the ER because he couldn't pee. Like I've mentioned in previous comments, it took 7 trys and finally an on-call Urologist had to show up to get the stupid catheter in. We were told that the catheter issue needs to be looked at by a Urologist which happens tomorrow morning. (Friday finally.) Anyway, the Oncolgist scared me because he seemed to deviate somewhat from the positive CT scan report. I am now wondering if there could be cancer in the bladder or prostate. I said as much to the Oncologist and he basically said, "Anythings possible, but things need to be all clear for us to start this chemo/radiation treatment" He was a weird jerk. (My fiance liked him.) Hmmmmm. I guess we need to wait another few days. They do a PET scan tomorrow or Monday as a 'before treatment' baseline record.

Lisa

Lisa

mp327

LlovesD

I am not a doctor, but I have to agree with the type of cancer the oncologist told you and your fiance it was.  Anal cancer is almost always squamous cell cancer found in the skin on the inside of the anal canal.  Technically, it is a type of skin cancer, but is referred to as anal cancer.

I hope the PET scan tomorrow will show no other areas of concern, including the thickening of the bladder wall.  Please keep us posted.

 

 

 

 

LlovesD

Thank you

I want to thanks everyone for their support. 

Donald, (the 'fiance') saw the Urologist yesterday. The Dr. said that his bladder and prostate look clear of Cancer. YEAH!! The plan now is to start his 2 chemo treatments and radiation one week from this coming Monday. That's April 23rd. The radiation is 15 mins a day for 5-6 weeks. He should be clear after that but they will check of course. 

The one issue still is that a Urologist had to put a new catheder in yesterday. He had Donald stay at his office all afternoon to see if he could pee on his own. Unfortunatley there is a lot of swelling down there from the surgery and from the ER nurses trying 7 times to unsuccessfully get the catheter in in the ER last Saturday. The Urologist showed Donald the red marks inside his bladder from the trauma. His bladder was also stretched with 8cc's? of urine which wasnt good either. He has to wait another week and hope that the swelling goes down enough to take the catheter out. They don't want to start treatment with it still in.

Lisa