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Recurrence After Only 7 Months

noodles886's picture
noodles886
Posts: 25
Joined: Oct 2011

In March I had a total abdominal hysterectomy -- was diagnosed with Stage 1b uterine cancer. Pathology report showed 16 lymph nodes tested and all clean. No spread to ovaries, cervix, fallopian tubes. No further treatment was recommended -- only 3 month follow-ups. At my last follow-up on October 17, all seemed to go well. I mentioned to gyn-onc. that I had something strange happening -- there was a foul odor and discharge from my belly button for the last few weeks. I had been using antibiotic ointment which took care of the odor but discharge was still here. Doctor thought it might be some granulation tissue and treated me with silver nitrate. As a precaution, he took a biopsy but wasn't expecting anything bad. He called me a week later and shattered my world -- the cancer was back. I was such a mess cause I couldn't believe was he was saying. This wasn't supposed to happen with Stage 1b. Had a PET/CT and get results tomorrow. Expecting it to light up like a Xmas tree! So scared about what doctor will tell me. Unfortunately, I've been making myself more anxious by reading stuff on internet about recurrences. Husband is ready to throw my computer out the window. Looking for positive info but everything is so negative when cancer doesn't come back in vaginal cuff or pelvic area. Can't imagine how cancer is in belly button. Plan so far is more surgery to remove offending tissue and then 30 radiation treatments. Of course all that could change with PET scan results.

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

I am sorry for your recurrance. The internet is behind about 2-3 years in information and probably more in uterine cancer. You can make yourself crazy studying too much. You need to learn some but will never be an expert. This does not mean the end is here; many women are living quite a few years with this cancer. There are many options with radiation and chemo. I read an article in coping magazine and this young many recommended not to read at all on the internet that it was a waste of time. He believed in leaving it up to the Doctors and putting energy in your daily life. I recurred after being negative except for positive washings and I was a 1 something. I am three years out and while I have a very agressive cancer I still seem to be doing well. Radiation sounds like a good treatment at the current time.

Diane

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

with Diane. It's hard NOT to be scared, though. I admitted this to my doc last week. Cancer is unpredictable and we can't get too far ahead of ourselves or else we will be paralyzed with fear and worry that we don't enjoy the here and now.

Your husband sounds very supportive. Enjoy each day with him. I encourage you to take someone with you to appointment and don't be afraid to ash lots of questions and get copies of your records. There is too much to absorb in the beginning.

Hang in there. God bless. Mary Ann

snyderpm
Posts: 37
Joined: Dec 2009

Noodles, I am so sorry to read about what you are going through. I had a similar situation. I was told I had almost no cancer, just some cancer cells in my uterus, and nothing anywhere else. I had a complete histerectomy by the diVinci method. I had no complications. In 6 months it was back in my abdomen and omentum. Seeds in the lining of my abdomen and a 2cm tumor in my omentum. They quickly performed a laparotomy and scraped the seeds out and removed my omentum. After I had 4 rounds of chemo. I am now more than 7 months since my last chemo, and all my tests are very negative for cancer.

Personally, I think I was contaminated, and that could very well be what happened to you. I think a lot of people are contaminated. Contamination is one of the official ways cancer spreads, but doctors never talk about it. Contamination can also happen even before you have an operation to remove everything. It can happen during the biopsy. Personally, I would rather think I was contaminated, rather than it came back because the cancer is aggressive. I wonder why they are going to do radiation on you and not chemo? Good luck, and I hope you continue to post here, becasue it gave me a lot of hope, and understanding, and I would bet it will do the same for you.

JoAnnDK
Posts: 276
Joined: Jun 2011

I thought removal of the omentum was part of a total hysterectomy. Did your doctor tell you why it was left behind?

Double Whammy's picture
Double Whammy
Posts: 2325
Joined: Jun 2010

I still have my omentum. I think it depends on the stage of the cancer at the time of hysterectomy whether they remove it or not. I had hysterectomy, 17 nodes (negative), and pelvic wash (negative). I was 1a.

Noodles, I'm so sorry about your recurrence. I'm sure you're beside yourself with worry. This business about it recurring at the vaginal cuff isn't always the case! Did you have internal rads?

Regarding the "contamination" theory, I do believe it's valid, but have no idea how they'd know if it was contamination or micrometastasis that simply could not be seen at the time of surgery. Snyder, what did your doc say? Remember the old wive's tale about "don't cut cancer?"

Please keep us posted about your treatments and come here for support and understanding.

Sending hugs and prayers,
Suzanne

snyderpm
Posts: 37
Joined: Dec 2009

Hey Double Whammy. One place I remembered I saw the "Routes of Metastasis" was at Wikipedia. Transplantation or contamination, was one of the four "Routes of Metastasis".
I have read about it several other places, and they are all credable. Here it is below.

Metastasis occurs by four routes:

1.Spread into body cavities. This occurs by the seeding surface of the peritoneal, pleural, pericardial or subarachnoid spaces. For example, ovarian tumours spreads transperitoneally to the surface of the liver. Mesothelioma can spread through the pleural cavity.[13]
2.Invasion of lymphatics. This is followed by the transport of tumor cells to regional nodes and ultimately to other parts of the body; it is common in initial spread of carcinomas.
3.Hematogenous spread. This is typical of all sarcomas but it is the favored route in certain carcinomas (e.g. those originating in kidneys). Because of their thinner walls veins are more frequently invaded than arteries and metastasis follows the pattern of the venous flows.
4.Transplantation. Mechanical carriage of fragments of tumor cells by surgical instruments during operation or the use of needles during diagnostic procedures.

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

My omentum was not removed with my hysterectomy either. I didn't ask why because I didn't think to question it...in fact I didn't even know what it was.

Cindy

RoseyR
Posts: 464
Joined: Feb 2011

I thought the omentum was only removed if in state 1A or B you had a high-grade (very aggressive) tumor; otherwise, it is not routinel removed.

But that leads to the question of your initial diagnosis--you say your cancer was caught early and treated entirely with surgery, but what kind of tumor was it? If serous or carcinosarcoma (aggressive tumors), I'm surprised you wouldn't have received some chemo or radiation after surgery as well as removal of your omentum.

As for your husband's desire to get you away from the computer, I am of two minds. Sure, you can drive yourself crazy looking at information that is sometimes a bit dated, or from dubious sources, but trying to find out about your condition can be empowering (sorry for overused word) and make you feel less passive, less victimized. There IS some valuable information on the internet if one searches for good web sites and recent clinical articles--and even testimonials from current patients, as we receive here, on this Board. Perhaps you should try to limit your time on the computer to two or three hours a day as a compromise.

Best,
Rosey

noodles886's picture
noodles886
Posts: 25
Joined: Oct 2011

Mine was Stage 1B Uterine Adenocarcinoma. The surgeon removed 16 lymph nodes and all were clear. Pathology report showed no metastasis to ovaries, cervix, or fallopian tubes.
Gyn-onc. felt no further treatment was needed -- so I had no chemo or radiation. Said chance of recurrence was only 5%. I find reading these forums is more beneficial than reading medical sites with very general info. At least here, I'm learning from women who have gone through similiar situations. What boggles my mind is why I have a cancerous discharge from belly button. Doctor told in his career (24 years), he's only seen one similar case, she was treated with further surgery on belly button to remove offending tissue, had 30 radiation treatments and she is still disease free after 7 years later. Right now he has me scheduled for the same surgery/radiation but that could change if PET results show more.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Sorry to hear about the recurrence...doesn't seem fair. First thing came to mind, what type of doc -- hopefully oncologist OB and could they have misdiagnosed you initially? Yes I've known women who had a recurrence as soon as 3 months.

After my OB diagnosed the cancer and called to tell me, one thing he said...don't read up a lot on the internet...not always accurate. I still looked, but was more open about it, not believing everything I read. Possibly limit your time. What I've always found helpful, get support from others such as right here...vs. lots of unknown reading.

I've known people in stage 1/2 uterine who still have chemo...possibly not bother with radiation. Docs in many cases give them option to have chemo, suggesting it might be a great precaution.

We can all wonder this or that, but you're right here and now dealing with recurrence. Pick yourself up and go forward and gain additional information to fight the fight.

We're all here for you, so plse use us for support...

Hugs,
Jan

noodles886's picture
noodles886
Posts: 25
Joined: Oct 2011

Just got back from gyn-oncologist and he gave me the PET/CT scan results. Positive news first -- nothing in lungs, liver, breast, spleen. Did find the cancer in the belly button area. He's not 100% sure how it got there -- said there is a lymph node that travels from uterus to belly button area and that could be the culprit. Told me this would be considered a local/regional recurrence and could be cured. Some spots were noted in my abdomen on PET/CT but of unknown origin. Could be scar tissue, previous infection, inflammation or cancer. He won't know until he does a scope. So tomorrow he will do a laproscopic scope and then surgery to remove cancerous tissue in belly button. If the abdominal spots turn out to be cancerous, that would considered a distant recurrence and very difficult to cure. Either way he is now considering both chemo and radiation. Still can't believe this is happening.

txtrisha55's picture
txtrisha55
Posts: 424
Joined: Apr 2011

I will keep you in my prayers. trish

zarkapopovic
Posts: 30
Joined: Jan 2011

I hope that your surgery went well today and that there are no residual problems. Keep us posted on what the treatment plan is.

Zarka P.

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

Duplicate - see below

janh_in_ontario
Posts: 110
Joined: Sep 2010

Hi Snyderpm

Can I ask what your symptoms were for the recurrence in your abdomen and omentum? I had a full hysti in October last year but had some bleeding in July which my Dr determined to be "not serious". Nothing since - but I don't "feel right" in my abdomen. Sneezing or coughing hurts, I feel stiff around the belly, etc. I am overweight so I keep putting it off to that but deep down I am worried there is something more going on. Just curious what symptoms you had.

Thanks
Jan

txtrisha55's picture
txtrisha55
Posts: 424
Joined: Apr 2011

When I had my hysterecemy done in April this year, my GynOnc Dr removed the Omentum, all female organs and about 16 lymph nodes. They already knew what cancer it was because of a previous D&C with scope. MMMT (Malignat Mixed Mallirium Tumor (?) (carcinomasacoma)cancer cells found in what was removed from that. 6 rounds of carbo/taxol, no radiation. CT scan on 12 Sep NED. I have another CT Scan on 22 Nov. Just living my life now.

I was told by GynOnc Dr not to read the Internet because everything is outdated and that each person and treatment is different. I did have a discharge and order from belly button but the dr said it was a yeast infection. What? I did not know that you could get that there too! She gave me to powder and it cleared up, no more problems now.

I am sorry that the cancer has returned for you. But you made it through once and you can do it again. Keep a postive attitude and keep having a stong support group of family and friends around you. This to shall pass. Good Luck. trish

noodles886's picture
noodles886
Posts: 25
Joined: Oct 2011

My surgery on Tuesday went as well as could be expected. Home now and lots of pain when I move around and especially when I have to cough/sneeze. Unfortunately, the unidentified spots of my PET did turn out to be cancerous. We were hoping they were only scar tissue.
Gyn-onc. is now talking about a clinical trial he thinks I'm a good candidate for. I thought clinical trials were only for people as a last resort. I'm so depressed and the pain in belly area isn't helping. One of the people from clinical trial came to talk to me before I was released from hospital. Gave me a packet of info to read with a 46 page consent form (lists every possible side effect). Will have to read everything when my head is a little clearer. Anyone been through a clinical trial?

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

...that the news wasn't better, but keep in mind that you've not gone through any chemo and/or radiation yet so you really are a treatment virgin.

I have no experience with clinical trials but it could be that you will be on a standard treatment for your type of cancer. Clinical trails don't necessarily mean, testing out new treatments and drugs and if you aren't comfortable with it, you can always say no. What is the trial for? I know someone that is on the same standard treatment protocol as I am, yet she is in a clinical trial. Sometimes they are done just to compare two standarized treatments side by side.

If you post all the information related to it, I'm sure many will speak up and reassure you that you aren't being used as a ginnea pig.

Take care,
Cindy

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I agree with Cindy. I would not rush into trial without knowing EVERYTHING about it. This journey has got to be about you first and assure you that you will not be under-treated.

Keep up posted. Hope you feel better soon. I remember those early days.

noodles886's picture
noodles886
Posts: 25
Joined: Oct 2011

The clinical trial will be with Paclitaxel, and Carboplatin plus a third drug which has shown promise. I think I've heard women hear refer to the first 2 drugs as Taxel and Carbo, right? They seem to be the standard chemo. From all I've read about recurrent uterine cancer in an area considered distant like abdomen, cure is not usually possible. All that can be achieved is prolonging survival with treatment. Evidently my gyn-onc. doesn't think Taxel and Carbo would be enough and that's why he suggested the clinical trial. Maybe I'm overthinking things but it seems to make sense. I am SO depressed and sad plus angry -- this wasn't supposed to happen to me with Stage 1B cancer.

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

Do you know the identifier number for the trial? Does the extra drug have a name or just numbers?

I'll bet your doctor is encouraging you to do the trial because he already knows what to expect if you just did carbo/taxol alone.

HellieC's picture
HellieC
Posts: 456
Joined: Nov 2010

Just wanted you to know that I understand how you feel - I've been in a similar position. I've felt the sadness and anger too. I had my hysterectomy in 2001 when hyperplasia was found, but there was no actual cancer detected. I was told I was cured!
Then 7 years later (yes - 7 years!), a "recurrence" was found at the vaginal vault. Had 6.5 weeks of pelvic radiotherapy and was OK for 2.5 years and beginning to breathe again and thought we had beaten it.
Then another recurrence, in summer 2010, again at vaginal vault and also wrapped around my colon. Had major debulking surgery, then 6 cycles of Paclitaxel (Taxol) and Carboplatin. I am currently NED (no evidence of disease) and have a scan coming up in a couple of weeks.
Please don't be depressed by reading the statistics. A lot of information on the internet is out of date and frightening. Yes, it may be more challenging to cure when it recurs, but there are new treatments coming along all the time. The best advice I read was to see each treatment as a "leapfrog" forward towards remission. If the darned thing dares to recur again, by the time we need it, then there will most likely be another treatment available to "leapfrog" forward again. Hopefully we can survive a long time this way.
Right now, you have had to deal with so much in such a short space of time that it is no wonder that you feel the way you do - it is perfectly natural.
Perhaps it would help to get a second opinion, in case there are other options which might be appropriate for you? Perhaps if your tumour is ER+/PR+ (which means that is contains hormone receptors) then hormone therapy would be another possible option?
We are all different and there is no "one size fits all" with treatment - you need to go with what is right for you and get as much advice and information as you can before you make your decision.
Sending you warmest thoughts
Helen

deceptiveheart
Posts: 3
Joined: Nov 2011

Trying to stay positive is the hardest part when you find out you have a rare cancer.I did all the right things i hope.Had a pap smear,vaginal ultrasound & uterine biopsy.Found an excellent gyn/oncologist who did a total abdominal hysterectomy on Oct 18.In hospital 4 days with no pain & everything is healing nicely.Went to have my staples removed & found out I have a rare cancer.Suggested by my Dr., clinical trials with 6 treatments of chemo.I have an appointment to get the ball rolling on Tuesday November 8th.Not alot of current info on this kind of cancer & wondering if chemo is the way to go ? Any info will be appreciated.

noodles886's picture
noodles886
Posts: 25
Joined: Oct 2011

There are actually 3 other drugs included in trial. From what I understand, it will be a randomized trial and participants will get 1 of the 3 drugs along with Taxel and Carbo. Study # is GOG-0086P

artist49
Posts: 53
Joined: Oct 2011

I have been on the trial that is under discussion since November 2010. I am in group 3-
carbo, ixabepilone and avastin for 6 cycles 3 weeks apart, and avastin alone every 3
weeks since then. I'm a patient at Sloan Kettering where I had optimal debulking
in September 2010 and was diagnosed UPSC stage 4B grade 3. NED since the surgery. I am
also on a radical anticancer diet-animal protein free, sugar free, dairy free but no
supplements-just vit D and a probiotic called Culturelle which cured severe diarrhea
caused by the chemo. Next week I'm meeting with a nutritionist at Sloan to discuss my diet
and will report anything interesting that he has to say.
Noodles, please ask me anything you wish to know about the trial .

noodles886's picture
noodles886
Posts: 25
Joined: Oct 2011

Artist49 - Is there any way I can get with you via e-mail? Are we allowed to contact each other away from the forums?

artist49
Posts: 53
Joined: Oct 2011

Noodles, when you login, there seems to be an option for private messages. I never used it myself and my husband, the computer whiz, is not home right now. Try the CSN Email option.
Looking forward to connecting with you and helping in any way I can.
If you can't contact me, I will figure it out later when my husband comes home about 12:30 PM NY time.

noodles886's picture
noodles886
Posts: 25
Joined: Oct 2011

I sent you a private message. Thanks!

artist49
Posts: 53
Joined: Oct 2011

Noodles, I am trying to send you a long private message but your email is not accepting
private messages. Please try to fix it so my message can go through.

noodles886's picture
noodles886
Posts: 25
Joined: Oct 2011

OK, I think I fixed it. Thanks

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

Sorry, Noodles, that you are
Sorry, Noodles, that you are dealing with all this such a short time after surgery and Stage IB diagnosis. Your cancer was listed as Uterine Adenocarcinoma which refers to it being endometrial. Do you know what type and Grade it was? Ther are two types of endometrial cancer, Type 1, which is the more common endometroid type, and Type 2 which describes the rarer and usually more aggressive types: papillary serous, clear cell, etc. Also, your path report should note the Grade, from Grade 1 least aggressive to Grades 3 or4, most aggressive. This additional info can provide more prognostic expectations. You should have a new path report coming from this surgery as well. Since you have had no chemo or radiation to date, you have many options to pursue.

Annie

noodles886's picture
noodles886
Posts: 25
Joined: Oct 2011

I had the more common type of endometrial cancer, not papillary serous. It was Stage 1B, Grade 2. Unfortunately, because this has been classified a recurrence, there aren't many treatment options to pursue. Recurrences outside of the pelvic area are not usually curable - only treatable.

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

Usually incurable if recurring refers to those who have been thru first line chemo for targeting any systemic cancer lurking post surgery. You have not done this yet, so do believe 'curable' is still a possibility for you. btw, unfortunately, I have been dealing with recurrences for 2 years so I am quite familiar with the 'incurable' designation.
Annie

HellieC's picture
HellieC
Posts: 456
Joined: Nov 2010

That seems to concur with things my oncologist has said to me. I fought my first recurrence with radiotherapy and was clear for two and a half years (we were cautionsly optimistic that we had beaten it). But it did come back and after surgery for the second recurrence, I had chemo and asked "are we still aiming to cure this"? Her response was "yes, it's possible, but I also wouldn't be surprised if it surfaced again in a couple of years".
So perhaps first line chemo is where they set the bar for cure? I am currently waiting for a PET/CT scan on 15th November to see if it has come back yet again(getting some pelvic pains, which, could, of course, be caused by a myriad of things). Of course, I hope it hasn't, but, if it has, then I hope I can leapfrog forward to another patch of NED!

zarkapopovic
Posts: 30
Joined: Jan 2011

Hi,

I, too, am in this clinical trial. The goal is to enroll 330 women nationwide. I had initial treatment earlier this year. My surgery was nearly a year ago. I sought out the trial since I thought it would be my best option. I also eat a clean diet and gave up all alcohol.

Let me know if you have any questions.

Zarka

california_artist
Posts: 851
Joined: Jan 2009

That is the first time I had heard of the type of recurrence you had. How awful to think all was well and to hear that you had had a recurrence.

You mentioned that your husband is not so thrilled with the time you spend on the computer, so I took a moment to look up the trial you mentioned and found an update from the clinical trials.gov page that was posted today, that I thought you might be interested in since you are looking for some sort of information.

It is being tried in the US in 172 different places and it has been going on since 2009. That is good news. If there was a problem with the trial, it would have shown up by now.

Can't tell you how much I do hope this will work for your cancer. Fingers crossed. Heart thinking warm huggy thoughts.

This is the layout for the three different arms of the trial:

Treatment/Intervention:
Patients will be randomly assigned (have an equal chance of being placed) to one of three treatment groups.

Patients in group one will receive a 3-hour infusion of paclitaxel, an infusion of carboplatin, and a 30- to 90-minute infusion of bevacizumab on day 1. Treatment may repeat every 3 weeks for up to six courses. Patients will then receive a 30- to 90-minute infusion of bevacizumab every 3 weeks for as long as benefit is shown.

Patients in group two will receive a 3-hour infusion of paclitaxel and an infusion of carboplatin on day 1. They will also receive an infusion of temsirolimus on days 1 and 8. Treatment may repeat every 3 weeks for up to six courses. Patients will then receive an infusion of temsirolimus once a week for as long as benefit is shown.

Patients in group three will receive a 1-hour infusion of ixabepilone, an infusion of carboplatin, and a 30- to 90-minute infusion of bevacizumab on day 1. Treatment may repeat every 3 weeks for up to six courses. Patients will then receive a 30- to 90-minute infusion of bevacizumab every 3 weeks for as long as benefit is shown.
Patients will undergo tissue and blood sample collection for laboratory studies before or after starting treatment .
After finishing treatment, patients will be evaluated every 3 months for 2 years and every 6 months for 3 years.

Looks as though you can figure out which group you are in by keeping track of how long and how often you are given your drugs.

Claudia

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

Since you're still getting the drugs typically given in 1st line chemotherapy, this looks worthwhile to get into.

You mentioned that you thought clinical trials were entered when you ran out of other standard chemo options. With really promising new chemo combinations, the drug companies want the enrollees with the best chance of completing & succeeding with the new drug protocol. In fact, many of the clinical trials preclude anyone from enrolling who has already been extensively pre-treated with a bunch of other chemo drugs. So please don't think of a clinical trial as a 'last ditch' effort; in many cases you could be taking what will one day become standard protocol. I'd look hard at the side effects, judge them against the strength of my own body, and I'd probably go for it. ((((hugs))))

noodles886's picture
noodles886
Posts: 25
Joined: Oct 2011

Saw my gyn-oncologist today and agreed to take part in the clinical trial. Next Monday I will be having a port inserted and will probably start chemo right after Thanksgiving. Over the next few weeks will have tons of tests - blood, chest X-ray, EKG, pelvic exam, CT scan. Nervous wreck about the treatment but hopefully will calm down once I get started.

What is the port insertion procedure like? Is there pain afterwards? I'm still in a little bit of discomfort from my surgery on Nov. 1 so hoping this new procedure isn't too bad.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I had it inserted as out-patient and really did very well after. Some getting used to it rubbing on my clothes (weird sensations). I had chemo 1 week later and did quite well. It's a dream, as I've got very small veins and had my first chemo with no port...wow was I a "pin cushion" on that first round. All other chemo's with port were much easier.

Very easy, rest assured and well worth the procedure.

Best of luck on all the tests and your clinical trial. Keep us all posted.

Jan

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

....YOU WILL LOVE your port. Okay perhaps love goes to far, but you will like it alot. It saves so much time when you get chemo and your veins will thank you. That said, having just got a port a couple of months ago, it hurt more than I anticipated. It didn't hurt at all when they put it in but lets just say I was uncomfortable for a good week afterward.

The first few nights I could not lay on my port side which is the side I usually sleep on. I was also having an excruciating "catch your breath" burning pain every time I lifted or turned my head. But thankfully that ended up just being the surgical tape that was covering the catheter. It must have been pulling on my skin. Once I took off the tape the pain was gone. I did have chemo the day after I got my port, so it's possible these aches and pains were partially caused by the effects of chemo.

The only reason I mention them at all is so you are not surprised when it hurts a little more than the doctors tell you. Shoot, they sent me home without any pain medication at all. Fortunately I have a nice little stockpile at home.

All that said you will feel better once this is all behind you and you get started on your chemo. I know it's weird to say, but the chemo is very anti climatic or at least it was in my case.

Take care and don't let it ruin your Thanksgiving.

Cindy

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I have a regular port - for last 3 years. It was uncomfortable for about a week or 2 like Cindy said. But....I agree that it is a very good thing. It will save your veins from being affected by chemo.

Mine was an outpatient procedure at the hospital. EVERY nurse that has accessed my port for last 3 years has RAVED about it's placement and how well it functions. I can only credit the doc that put it in - a vascular surgeon. Apparently he knows his stuff. Not everyone does such a good job according to the nurses. So, in hindsight, I would encourage you to talk to discuss with the doc who will do surgery where he will PLACE the port. Mine is on the upper right of my chest tucked into a muscle. It does not interfere with my bra strap or seat belt when I drive. It is in the way of seat belt when I'm in the passenger seat. I have used weight machines, kayaked, done yoga, and other physical activities without any problem.

You will do fine. I wish you well. Mary Ann

Kaleena's picture
Kaleena
Posts: 1203
Joined: Nov 2009

Having a port is great. Like everyone says, it saves your veins. They have newer ports now that can be accessed for more things instead of chemo and blood draws. I had mine in for 5 1/2 years. Just had it taken out two months ago. All of it outpatient procedures.

My best to you.

Ro10's picture
Ro10
Posts: 1462
Joined: Jan 2009

I am so happy you are getting a port. I did 4 chemosynthesis without a port. Each lab and chemo required more sticks. I had a port inserted knowing that my UPSC would be like a chronic disease and would need more treatment later. I had a power port inserted. The power port can be used for CAT scans also as well as labs and chemo. I had minimal pain afterwards and no pain later. Good luck with your clinical trial. In peace and caring.

noodles886's picture
noodles886
Posts: 25
Joined: Oct 2011

Found out yesterday from clinical trial nurse that if my blood glucose is too high, I won't be permitted to participate in the trial. I am diabetic and my glucose has always been under control (without meds). Because of all the stress I've been having, my numbers have shot up. Now I'm stressing over the fact that I may not be able to participate in the trial. And I know chemo makes your blood glucose rise so I'm afraid I won't be able to have any chemo. Hubby is telling me to relax but my mind just keeps going round and round with everything bad.

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

It always seems to be something doesn't it. Don't worry about not being in the trial. There are certainly good reasons to be in one, but ultimately you want what is best for you. You will get chemo and once you start you will find that you worry less, or at least that is how it worked for me.

If the possibility of getting into that clinical trial is delaying the start of treatment, I might reconsider (my opinion only). It's obvious that it's stressing you out and that can't be good. Starting treatment will be the best medicine for your stress management.

Take care,
Cindy

Ro10's picture
Ro10
Posts: 1462
Joined: Jan 2009

I am not sure the chemo raises your blood sugar as much as the steroids they give you. I hope you can relax and think of good things. In peace and caring.

noodles886's picture
noodles886
Posts: 25
Joined: Oct 2011

I had a power port inserted yesterday. Procedure was very easy for me. Doctor was great, told me everything he was going to do, and I was awake during whole procedure which lasted about 45 min. Didn't feel anything and minimal pain afterwards. Was a sore later in evening when anesthetic totally wore off but much better today. Amazing that the new ports are placed under the skin. Doesn't it hurt when nurse has to pierce skin to access the port?

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

This is what I've got and so easy to access.

They should give you a prescription for a cream which numbs the area, whereas, the nurses that use a needle won't cause you any pain. All you'll feel is a slight prick, similar to when getting a shot in the arm,,,,,,that's it!! Easy as pie~

I've had mine for almost 3 years and don't even notice it.

Bet you're glad that's behind you, now off to treatments very soon.

Jan

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Just a suggestion. If your symptoms have lasted more than 2 weeks, I would talk to your doctor.

Mary Ann

Ro10's picture
Ro10
Posts: 1462
Joined: Jan 2009

I know some use the cream before the port is accessed. I never felt the need for the cream. I do not think the stick is as bad as them looking for a vein in your arm. Especially if they have to stick you several times in the arm! Hope you treatments go well. In peace and caring.

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