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Newly diagnosed

ybrlabs's picture
ybrlabs
Posts: 10
Joined: Oct 2011

Hi all,

I'm happy to have found these boards even though I wish I didn't need them. I'm Sandy and I live near Frederick, MD. I had abnormal cells of unknown origin on my pap so my family physician referred me to a gyn. Based on ultrasound and the pap results, the gyn performed a D&C with hysteroscopy on 10/20. She asked my husband and I to come in her office the following Monday and gave me the diagnosis of uterine cancer. She first said the results indicated it was papillary seorus adenocarcinoma of the uterus but further testing was being performed. She called me that evening to let me know that they could not confirm the initial type of cancer. It's still cancer but the "good" news is that it may be normal cancer. It feels weird to say that is good news. My samples have been sent to either Mayo or Hopkins to determine type and I should have results in a few days. The waiting is killing me! I'm 44 years old with no symptoms. I'm taking it one day at a time and scheduling all of my testing and other doctor consults. My job is being accommodating and letting me leave for appointments with short notice. I have supportive family and friends.

Thanks for letting me share

Sandy

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Sandy, I am sorry that you have a need to use this site, but you came to a good place. Lots of good info and supportive women here!

I can understand your anxiety ....the waiting is always the worst! Please keep us posted on what you find out. And feel free to ask any questions that pop into you mind. There are lots of good threads here for those newly diagnosed so read those as that should answer many of your questions.

In the meantime, try to relax and do things that you enjoy doing!

Karen

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

Hi there, Sandy. Great pix!!! I'm glad you found this support group. Hopefully you don't have uterine papillary serous carcinoma (UPSC). And when cancer is involved, the good cancer is better than the bad cancer. Sick humor, isn't it!!!!

Hang in there. It's good that your husband is in the loop from beginning. Nice that your doc thought to ask him to come.

I'm a UPSC sister. There are many here. Just some basics FYI - get a good gynecologic oncologist to do surgery, get tissue assay, take someone with you to appointments, and get copies of your records and 2nd opinion if you want. Keep the faith and take one step at a time - trying not to get too far ahead. This journey has lots of bumps in the road.

We are here for you. Mary Ann

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

You probably have uterine cancer of the endometroid; ask medical records of a copy of your records or ask your Doctor. I agree with Daisy, (I have known her a long time!) take it slower and be sure to get tissue assays for possible chemo. Also remember the internet is behind on statistics and information; so women are actually living longer with this.

A magazine called oncology stats can give you up to date infor and will email you about news.

We are here for you; I've learned to live with the stress now. Amazing but I really have. My hubby and I actually have fun!

Love,
Diane

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

Whenever anyone asks what kind of cancer I have, I say..."not the good kind". I think it's funny, but I'm not sure everyone does.

Cindy
MMMT (carcinosarcoma) Stage 2 high grade.

txtrisha55's picture
txtrisha55
Posts: 422
Joined: Apr 2011

They tell me they already knew I was special in the sacrastic way.

Sandy, Sorry to hear that you have been told you have cancer. There is a lot of information of this site. Wish I had found it before I started my journey back in March this year. Read as much as you can but remember that each person's journey is different and each case and treatment is different. That is what my doctor told me and try not to read the general internet information try to stay with true cancer related internet sites like National Cancer Institute, Amercian Cancer Society, Cancer Journals as they will have the more up to date information.

I really got freaked out when told I had cancer on April 1st, and typed in the type and read I had a 50/50 shot of living past 3-5 years. Shut my office door and cried like a baby. Then had to get back in to the mode of What God brings to you, He will help you through it. This to shall pass. Good Attitude will get you through it.

Good Luck on your journey.trish

Hilajoan's picture
Hilajoan
Posts: 15
Joined: Nov 2011

People look at me somewhat tenderly, as they ask how I am..... I say cheerily, 'I'm great, thanks, how are you'? Hope it diffuses the sympathy (though I do appreciate it). They clearly think I am dying - but I don't - even though I had breast cancer earlier this year and a mastectomy, and now endometrial carcinosarcoma and hysterectomy. Wow, sounds terrible, doesn't it, but honestly, nothing hurts except the surgery wounds a bit..... Good luck all, Joan

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

I read somewhere that most unterine cancers have up to an 80% cure rate so there really could be some good news even if you do have cancer.

My sister also read this information without understanding that mine was not "normal" uterine cancer. I didn't correct her when she told me.

Take care,
Cindy

JoAnnDK
Posts: 276
Joined: Jun 2011

Sandy, if you want the name of a gynecological oncologist at Hopkins, let me know. That is where I went for my surgery and treatment, etc. You are not that far away.....

50 percent of my doctor's patients are from out of state and she does the initial surgery and then they get chemo near home. She has patients from really far away.....she shares surveillance with their local doctors.

JoAnn

ybrlabs's picture
ybrlabs
Posts: 10
Joined: Oct 2011

Thanks for the advice and support! I'm going to see a doctor at Sinai in Baltimore, MD. I've been trying to learn all I can from "legit" websites. Luckily, I work in science and have access to the medical journals. I'd appreciate any doctor recommendations in the Baltimore/DC area!

Thanks

Sandy

JoAnnDK
Posts: 276
Joined: Jun 2011

Sandy, I am sending the doctor info via CSN e-mail, which you can find in the pinkish box on the left side of this page.

Are you going to Dr Abbas at Mt. Sinai?....he did all his training at Hopkins - internship, fellowship, residency. And he has a practice in Frederick, I see.

Best wishes on this journey that none of us wants to be on....

JoAnn

ingridjee's picture
ingridjee
Posts: 6
Joined: Aug 2011

Cindy

I am taking a day at the time, after all it is almost impossible to plan anything but as I said, I do feel lots of uncertainty, specially because cancer is expensive, I pay 20% on my health insurance, and my savings d willed.
Even though I work from home, I feel too tired to work, an I have sore throats and cannot speak on the phone for a regular schedule. The STD- short term disability pays only 50% of my salary, and I live in NY! I wonder if I could go back to work after radiation or even with the radiation! ;)

You are not alone.

Thanks for sharing!

ybrlabs's picture
ybrlabs
Posts: 10
Joined: Oct 2011

The second opinion on my biopsy results are in and they confirmed that I do have UPSC. I'm still in shock and denial. The gyn/oncologist, Dr Abbas at Sinai in Baltimore, MD, said I'm not a good candidate for the DaVinci surgery I will have the traditional surgery since he wants to look and feel around. I haven't met him yet but will on 11/9. The good news is that my CT scan and chest x-ray came back clear. My blood work is ok. Today I'm having a colonoscopy. I told my 12 yr old daughter yesterday about my diagnosis. I'm preparing her for battle. Can anyone recommend a good resource for reading about my future journey?

Thanks,

Sandy

JoAnnDK
Posts: 276
Joined: Jun 2011

Sandy, I am not surprised that your doctor is not using daVinci. Hopkins-trained doctors seem to like to get in there and feel around. My doctor told me that she never would have found my enlarged lymph node with daVinci because I have such a deep pelvis (that is my best recall of her reason).

UPSC is so rare that I am not sure any books have been written about it....but lots out there about going through cancer treatments.

JoAnnDK
Posts: 276
Joined: Jun 2011

My niece, who is a nurse, wrote to me just after my diagnosis:

"You need to cry. How does life change so suddenly? You are crying for yesterday when everything was fine and now for tomorrow when faced with the unknown. It is a lot to take in and process. In a blink of an eye, it's "what the hell just happened?" Again, I am also at a loss for words on how to imagine how you feel. I am scared also, yet relieved you are being treated at a great place with up to the minute knowledge of treatments and clinical trials. I really don't know much about the type of cancer you have, but don't linger over stats and numbers. YOU are up against your cancer and need to be positive and optimistic for your fight. Visualization can help so much. Picture it as an entity that you can see and destroy with all your treatments. We can win this, one small step at a time. Just get through today."

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

Sandy I am sorry to hear your UPSC was confirmed however you will not know the Stage 'til after surgery and it may very well have been caught early. I know I was in shock when I heard the UPSC diagnosis. That was 4 years ago and I was Stage IVB but I'm still here, perhaps a little the worse for wear but I am also older than you. I also was diagnosed at age 41 with Stage 2B breast cancer, which recurred 6 years later. In all, its been 18.5 years I've been battling cancer - surgeries, chemos, radiation treatments - the body is truly an amazing thing! My kids were 11 and 15 at first cancer diagnosis and I was filled with such fear, presented with such gloomy statistics - would I even see them thru high school? But today they are both college educated, happily married, and I'm now a grandma! We have such amazing resilience!

As far as books, my husband at the time of my breast cancer gave me a book Getting Well Again by the Simontons, husband and wife team. I never did really engage with it but revisited it in the last year and so wish I had way back then. It is an excellent book for mind and spirit. Also, Anti-Cancer, A New Way of Life by David Servan-Schreiber, MD, is an excellent book for all aspects of body, mind, and spirit. And, this site with the shared information and experiences, the support, is wonderful. UPSC tends to behave and is treated like ovarian cancer and you may well find it helpful to visit that board as well.

You are in my thoughts for an early Stage and great prognosis!
Annie

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

I am sorry you have to join the "sisterhood of UPSC". It is very shocking to hear. We can all relate to how you are feeling. I pray that your surgery will reveal an early stage. After the surgery you will know what the plan is. Glad that your CAT scan and chest x-ray were clear. Feel free to come back with any questions you may have. There are many on this site that have completed their treatments, some are new, and some (like me) have had recurrences. The unknown is very scary, but try to take one day at a time. Get through the surgery first. Then see what the plan is. In peace and caring.

ybrlabs's picture
ybrlabs
Posts: 10
Joined: Oct 2011

I met with my gyn oncologist on 11/9 and he went over the pathology report with me in detail. The concern now is they can't identify if the cells are from the uterus or ovary. I'm scheduled to have an abdominal hysterectomy/exploratory laparotomy on 11/22. I'm really nervous but have faith in my doctor. To top it off, one of my miniature horses managed to kick me in my groin the other day and I now have a nice hoof shaped bruise. Guess he wanted the doctors to know I belonged to him. At least it wasn't one of my big horses.

Any advice for me regarding the surgery and recovery? I don't do well in hospitals and will be fighting to get out ASAP! Not the best way to spend Thanksgiving but at least I know it will be done.

Thanks

Sandy

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

I'm sure when they do the surgery they will find out more. Please request a functional profile (assay) of your tissue.

Re: surgery and recovery. No real words of wisdom besides staying hydrated. They will get you up and walking soom after surgery.

Try to not worry and enjoy your horses. They are beautiful!!!

Mary Ann

Kaleena's picture
Kaleena
Posts: 996
Joined: Nov 2009

Hi Sandy:

Sorry you have to go through this. When I had my hysterectomy (they didn't know I had cancer at that time), the path came back and found it both in my uteris and one ovary. After another surgery for staging, it was determined I had endometrial adenocarcinoma (I was 45 years old). However, they treated me as ovarian. (You can get more tests approved this way). By the way, I am now 51 years old.

Some advice, see what else they are going to remove during your hysterectomy. I had a complete hysterctomy (uteris, tubes, ovaries). Once they found the cancer, and during the staging, they removed my appendex, omentum, and some lymph nodes. The apendix and omentum were removed because my doctor at the time said it was a place for recurrence because it got more blood flow???

Other advice for after surgery? Move as much as possible. In order to be released from hospital, you have to have good bowel movements. Try to get off pain medication as soon as possible, becuase it can cause constipation. It usually is only a 3 day stay. (and I had the traditional surgeries).

My best to you for a speedy recovery.

Kathy

txtrisha55's picture
txtrisha55
Posts: 422
Joined: Apr 2011

I can talk a little bit on this even though I did not have USPC, I was diagnosed with Malignant Mixed Mullerian Tumor (MMMT). The tumor itself was 5.5x5 cm and a 1A in the uterus but they found two microscopic cells in 1 lymph node and bumped it up to a stage 3c. I had the abdominal hysterectomy/exploratory 8 April 2011. The Gyn Onc Dr said surgery would last 5-6 hours but only lasted 3.5. The moving to regular room after recovery was hard as they wanted me to move from gurney to bed. I had 1 large man and 1 tiny nurse to help move me. Not fun, hurt really bad. But after I got settled Morphine push was nice. The next day the nurses told me I had to get up and set in a chair. Friends that had hysterectomies before told me to put a pillow on my stomach and push down as you tried to get up as it would help. They told me that the pillow would become my best friend during recovery. IT did work and I continued doing that for about 4 weeks after surgery, used it in the car too. The nurses had goals for me every day and would write them on a white board. Get up sit in chair, go to bathroom, walk the halls, take a shower (with nurse help), go for longer walk, etc. They also gave me a tubey thing to work on my breathing so my lungs did not get fluid build-up in them. You would put it in your mouth and breathe in and had to move the internal ball up to a certain number. I had to do this for 15 minutes times 3 times a day. They kept moving the number up too!
I basically took myself off the morphine as I did like it but made me goofy. I kept till Sunday. Get ready to lose all sense of modesty as I was UT Southwestern Hospital were they also do teaching, so lots of Fellow Drs come in and out of room and check you out. They came in the AM and in the PM. I stayed the Hospital for 7 days Friday night till Friday morning. I went home with staples and a drain bag. I had tubes, ovaries, cervix, uterus, 14 lymph nodes and the omentum removed. I stayed off work for 8 weeks for surgery. Four weeks after surgery started Chemo (carbo/taxol combination) on 6 May. Every 21 days for 6 treatments ended 22 August. Hair fell out 25 May. I think the funniest was that my nasal hair fell out too! How can a person try to avoid getting sick when they have no protection against breathing in germs up their noses. I did not understand that. I chose not to do a wig, in Texas in the summer is HOT (we broke the record of hottest days in summer this year) so could not wear hats or scarves, I sweated too much. I just went bald back to work and out in public.
I am NED as of 12 Sep when I had my first CT scan after all the chemo. My CA125 was 15 before surgery, went to 169 before chemo but it dropped each chemo treatment till now it is 19 as of Sep. I go back for another CT scan 22 Nov and blood work 2 Dec then see the GynOnc Dr on 5 Dec.
Trying to change diet and exercise more, the change in diet is hard to break after 55 years of eating what I wanted. Maybe that is why I got the cancer, but there are healthy people on this site that got it too, so only God knows. Just remember that He is there to help carry you through this journey. There is a lot of information on this site and a lot of women to help answers questions and help with support if you need it.
trish

ingridjee's picture
ingridjee
Posts: 6
Joined: Aug 2011

Thank you Trish for sharing.
I am going through the same treatment, same stage, same operation, from 7 lymph glands 1 was cancerous but had it also on the right tube and ovary, and the cervix.
They said it is aggressive and thus I need aggressive treatment.
Now one more round of chemo - I did not get a break on tiredness, bad mouth taste, bone pain. I also had allergic reaction to chemo and take it with steroids. In one month I have chemo and then maybe one good week after chemo of feeling well .
I wonder how is radiation, some people say side effects are less than chemo . Well, I guess I will know.

I am taking a day at the time, afterall it is almost impossible to plan anything but I do feel lots of uncertainty, specially because even though I work at home, I feel too tired to work, an I have sore throats and cannot speak on the phone. The STD pays dirt and I wonder if I could go back to work after radiation or even with radiation! ;)

Thanks for sharing!

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

I have MMMT as well. Had 3 rounds of chemo, now I'm getting radiation (25 rounds) which will be followed by three more rounds of chemo. I work full time (though I still have my disability just in case) and have had no issues so far with the radiation. I've only had 8 treatments though and from what I understand side effects take a couple of weeks to show up. That said it sounds like diarrhea and fatigue are the most prevalent of the side effects, so hopefully it won't be too bad. I'll post again, if the side effects become too bad.

Good luck and take care.

Cindy

RoseyR
Posts: 462
Joined: Feb 2011

Dear Ingridjee,

I too was diagnosed with your form of cancer albeit stage IB and clear lymph nodes.
Had the same treatment (am finished with it all) and had no side effects from the pelvic radiation--perhaps because my integrative doctor asked me to take 90 mgs of zinc chelate a day (a high dose but OK if just temporary) throughout treatment to protect lining of my intestines. Also took two teaspoons of fish oil a day and shark-liver capsules (two a day) to protect intestines. He also recommnded curcumin - 500 mgs x 3 a day.

Best,
Rosey

Hilajoan's picture
Hilajoan
Posts: 15
Joined: Nov 2011

Thanks, Rosey, I've made a note of your integrative doctor's recommendations - to ask my onc. on Friday when I go. Joan

txtrisha55's picture
txtrisha55
Posts: 422
Joined: Apr 2011

Have not seen any response from you lately and just wondering how you were doing? trish

Hilajoan's picture
Hilajoan
Posts: 15
Joined: Nov 2011

I had 'radical' hysterectomy on 14 November - just over 2 weeks ago and have carcinosarcoma - used to be called MMMT. Someone recommended the MD Anderson Center in Texas - though we have good facilities in London (England, where I live) but I would travel if there were reason to. Chemo - 6 rounds - scheduled, followed by 25 sessions of pelvic radiation. Just not sure whether the poisoning of the body and the burning of it to protect it for the future is the best possible way forward. Any ideas, anyone? Joan

txtrisha55's picture
txtrisha55
Posts: 422
Joined: Apr 2011

I went to UT Southwestern Simmons Cancer Center here in Dallas, TX. Their Cancer center is NCI recognized just like MD Anderson down in Houston. I have carcinosarcoma too stage 3c1 and had the whole hysterectomy done back in April. 6 rounds of Carbo/Taxol starting 6 May through 22 Aug. No radiation, as Dr said it was not necessary. (will see if she was right down the road). I have had two CT scans. 12 Sep was NED. 22 Nov, which I get the results on 5 Dec. Hopefully the same. Then blood work every 3 months. If you do not want to go the radiation, you could always ask for a 2nd opinion. trish

ybrlabs's picture
ybrlabs
Posts: 10
Joined: Oct 2011

My surgery is scheduled for Tuesday. I'm scared of what they might find but I'm hoping knowing who or what I'm fighting will take away some of my fear. I am now thinking every sniffling nose and cough is a symptom I missed. I have a couple of swollen lymph nodes in my groin that are freaking me out. Of course they are located right where I have the bruise from my horse kick. I'm afraid I may cause even more anxiety for my husband.

On a happy note, I got a cute short hair cut today and it was fun to step back and not worry.

Thanks for the continued support

Sandy

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

Hi Sandy - I went through this just a couple of weeks ago. Had a laparoscopic hysterectomy last month for a fibroid, recovery was fast but the path reports came in with UPSC. I've been in a state of semi-denial since then which actually helps a bit.

I had surgery on 11/7 to remove the cervix, top 1/3 of vagina, ovaries, tubes, nodes and omentum. Was in the hospital for 5 days - pain control was the biggest issue for me. Morphine and Benadryl combo helped but the best was Torodol - like a miracle drug.

Got home on 11/12 and swelled up like a balloon all over. Not sure if it's just a normal side effect from surgery (had a similar situation after the hyst but that went away after a couple of days) or lymphedema but it's starting to get better. However on 11/17 I rushed to the onc and found out my incision is infected. Grrrr. I'm on powerful antibiotics and things are starting to improve again. I was supposed to have staples out this week but the infection's delaying that. Not sure what the chemo/radiation schedule will be - that's next on the agenda to discuss with the onc.

Do what feels best for you. Ask for help. Leave your modesty at the door :)

Trish - I'm in Irving and have been treated at Medical City. Are you close by?

Hugs to all from Liz in Dallas

txtrisha55's picture
txtrisha55
Posts: 422
Joined: Apr 2011

I live in Oak Cliff part of Dallas and my GynOnc Team is at UT Southwestern Cancer Center on Inwood & Harry Hines in Dallas. It in NCI recognized. Sorry you are having problems. My surgery went ok but I kept my staples in for two weeks after surgery. trish

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Sending you thoughts and prayers for your speedy recovery....

Hope surgery went well and you can finally get some accurate results and then it will be off to treatment for you!

We will be here to guide and support you every step of the way....

Check in when you can..

Laurie

ybrlabs's picture
ybrlabs
Posts: 10
Joined: Oct 2011

I had my surgery on the 22nd as planned and came home today. The good news is that the doctors could not find anything abnormal with a visual look. They removed a large section of Omentum, my appendix, lymph nodes, uterus, ovaries, and Fallopian tubes. Dr Abbas andDr Zucker saw nothing abnormal. We won't have the biopsy results for 7-10 days. I'm actually hoping something is found because what if nothing appears? Where did the papillary serous cells originate.

I'm recovering as expected. Feeling pretty bloated but I can work thru this. I have to give myself the anti-DVT shots in the morning and am nervous about that.

Thanks for all of the positive thoughts and prayers!

Sandy

ybrlabs's picture
ybrlabs
Posts: 10
Joined: Oct 2011

I had my surgery on the 22nd as planned and came home today. The good news is that the doctors could not find anything abnormal with a visual look. They removed a large section of Omentum, my appendix, lymph nodes, uterus, ovaries, and Fallopian tubes. Dr Abbas andDr Zucker saw nothing abnormal. We won't have the biopsy results for 7-10 days. I'm actually hoping something is found because what if nothing appears? Where did the papillary serous cells originate.

I'm recovering as expected. Feeling pretty bloated but I can work thru this. I have to give myself the anti-DVT shots in the morning and am nervous about that.

Thanks for all of the positive thoughts and prayers!

Sandy

txtrisha55's picture
txtrisha55
Posts: 422
Joined: Apr 2011

The shots, I could not do them myself, I got my daughter to do it as I am really bad when it comes to needles. My daughter was squimish at first but she got better. She freaked if I made a sound though so I tried not to. When I was in the hospital the nurses did it but at home my daughter had to do it. I tried to do it once but I could not do it after that she had to. If you have someone that you trust maybe they can help. Take it easy during recovery. trish

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

I am a nurse. When I was pregnant I needed B 6 shots for severe nausea. I had a terrible time giving myself those shots. Even is I got the needle in my leg, I would have a hard time injecting the Medicine because it burned so bad. Luckily I had nurse friends that would give me the shots.

txtrisha55's picture
txtrisha55
Posts: 422
Joined: Apr 2011

I just cannot imagine giving myself a shot even in my leg. These shots had to go in my stomach and while I do have a lot of stomach to choose from I just could not do it. By the time the month of shots were up I was bruised all over. My daughter had a hard time finding a place that was not already bruised to pinch to give me the last few shots. I would pick a place and say ok give it to me here and she would say no. Twice her fiancé had to come and do it because she was afraid to do it. He gives himself insulin shots so he is not afraid at all. The only problem he had was to inject the medicine slowly so it did not burn. Tiffany did it fast a few time at first and it burned bad. All she did was saying I'm sorry, I'm sorry, I did not mean to hurt you. I can laugh about it now but then it hurt. I just wish I was not a baby about needles. My best friend’s daughter had to give herself shots when she was pregnant because of a blood disorder they found but she has a beautiful 18 month old now so I say it was worth it. trish

ybrlabs's picture
ybrlabs
Posts: 10
Joined: Oct 2011

I had my surgery on the 22nd as planned and came home today. The good news is that the doctors could not find anything abnormal with a visual look. They removed a large section of Omentum, my appendix, lymph nodes, uterus, ovaries, and Fallopian tubes. Dr Abbas andDr Zucker saw nothing abnormal. We won't have the biopsy results for 7-10 days. I'm actually hoping something is found because what if nothing appears? Where did the papillary serous cells originate.

I'm recovering as expected. Feeling pretty bloated but I can work thru this. I have to give myself the anti-DVT shots in the morning and am nervous about that.

Thanks for all of the positive thoughts and prayers!

Sandy

fanniemay
Posts: 52
Joined: Nov 2011

Glad to hear that drs havent found anything. Waiting for the biopsy report is so hard. 7 to 10 days is a long time to wait. I had my results in 3. I have USPS stage 1A. See my dr. on 12/15 to get my treatment schedule. I will be thinking of you. This is a great, supportive group to belong to. Sounds like you have a great team of drs. working with you. Keep us posted. God bless, Edith

Tresia23's picture
Tresia23
Posts: 71
Joined: Dec 2010

Hi Sandy,

Just read all of your posts. I agree with others, it is hard waiting for biopsy results. It is a strange time all round dealing with cancer. Try to rest and let others help you. You will heal better if you take things gently.

With giving shots, I was also a bit squeamish even though I am an RN and have given many hundreds of injections to others. I just kept to a ritual with my own shots. Tried not to think of it as my body (a bit of disassociation!) and also told myself that it was helping to keep me well.

It must have been difficult for you talking to your daughter.

Thinking of you,
Georgia

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

I was really bloated too after my surgery. When the lymph nodes have been messed with, it takes the body awhile to figure out how to drain fluids. Turns out I was retaining 22 pounds of fluid. Got some compression socks and wore them 2-3 hours and almost immediately started peeing massive quantities. Also started oozing from my incision (well, gushing may be a better word). Lost 12 pounds in 36 hours. Ask your dr :)

Like you I also had clean paths. Doc offered observation or chemo. I'm doing the chemo because I don't want to have to go through this ever again!

Liz in Dallas

txtrisha55's picture
txtrisha55
Posts: 422
Joined: Apr 2011

When do you start the chemo? Will you do it at the Irving hospital?
trish

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

Argh ... Chemo was to begin Monday the 5th but my incision is infected again so that's postponed. The good news is that I've switched doctors so that makes me feel better. Hopefully my check up on the 5th will show a clean incision and I can get back on the chemo schedule for the 12th. I'm mentally ready and these delays are driving me nuts. Once I'm back on schedule the chemo will be in the dr office by Medical City.

Liz in Dallas

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

Argh ... Chemo was to begin Monday the 5th but my incision is infected again so that's postponed. The good news is that I've switched doctors so that makes me feel better. Hopefully my check up on the 5th will show a clean incision and I can get back on the chemo schedule for the 12th. I'm mentally ready and these delays are driving me nuts. Once I'm back on schedule the chemo will be in the dr office by Medical City.

Liz in Dallas

ybrlabs's picture
ybrlabs
Posts: 10
Joined: Oct 2011

Well the doctor called Tuesday evening with pathology reports. I was told all was clear with the exception of a minimally invasive spot on the cervix. He said they would recommend close monitoring but no chemo or radiation. Needless to say we were ecstatic. However he called back on Wednesday and said the pathologist changed their mind. Now there is a spot of cancer on the cervix but no more details than that. He wants to wait for the full pathology report which won't be in until 12/5 or 12/6. I didn't want to push for much more because he was really angry at the pathologists. I asked if the uterus and ovaries were still clear and he said yes. So I guess that is still good news. I'll take it where I can get it. I have an appointment with him on 12/6. This is really frustrating!

Sandy

txtrisha55's picture
txtrisha55
Posts: 422
Joined: Apr 2011

Pathology reports are very confusion anyway. Make sure you request a copy of it. My GynOnc Dr who did my surgery, abdominally, so she could really get in there are explore, first said that the tumor was contained to just the uterus and she did not see any other spots. The pathology report came back with 2 microscope cells in 1 lymph node. That would not have been something the Dr could have seen.
I pray that your pathologist finds all the spots/cells so you can get a full picture of what you have to fight against. Hopefully with a copy of the report you can find out more. Make sure you take someone with you when you go for your appointment. Make a list of questions. You can discover some of them on this site from the messages that people have posted here. Like was an assay of the cancer done, which chemo works best. Staging and Grade. Hormone Receptive positive/negative. If you have to have chemo, how many treatments, what type. Will you have to have radiation?
When I went for the first visit, my sister and my daughter went both had lots of questions. We also used my daughter's iPhone to record the conversation, just in case we missed something.
I had surgery on Friday April 8 and the pathology report took till Wednesday 20 April. My Cancer Center has a website set up that each patient can have their own site and it list all reports including blood work, all appointments has a way you can email the drs and nurses. I have full access to all my reports and test results including CT scan reports.
So there are no guessing games of what the reports say. Now can I understand the reports no but I can pull out words I do not understand and find it on the Internet.
Good Luck on your visit and I will add you to my prayer list as I do for all on this site. trish

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

I'm so sorry for all the mixed messages you're getting... I can't imagine how frustrated and scared you must be. One day you'll look back at this and be amazed how strong you were!

Sandi_Zert
Posts: 3
Joined: Nov 2011

Hi Sandy,

I am glad to see you are getting wonderful support from this sight. Hang in there! I am also having anxiety from "not knowing" what tyoe of cancer I have. This cancer escaped detection by a Pap smear I just had done 6 weeks ago so I am puzzled that I now have a once inch half solid, half fluid mass growing in my uterine wall. I went into the ER with severe abdominal distress and wished I had appendicitus rather than this. I am a busy professional and can't afford this crisis now. I hope I can remain active while I have treatment.

ybrlabs's picture
ybrlabs
Posts: 10
Joined: Oct 2011

Hi,

I met with my doctor on 12/7 and received good news! My ovaries, uterus, lymph nodes, etc were all clear of cancer. What they found was a glandular cancer high in the cervix. Apparently, the pathologist had a very hard time finding the cells. The margins were clear! I have to have an additional debunking surgery in a couple of months due to being only 44. My doctor said if he had known it was in the cervix hew would have performed a more radical hysterectomy. He is pretty confident that now the he knows what he is dealing with he can do the next surgery robotically. I'm just relieved that he does not see a need for chemo or radiation.

I'm healing pretty well from the abdominal hysterectomy. At the end of the day I'm pretty sore but it's manageable!

Thanks you for all of the support!

Sandy

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