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Nervous about chemo, among other things

Shell bug's picture
Shell bug
Posts: 68
Joined: Nov 2011

This is my first original post. I am 38. I was diagnosed with grade 3 endometrial cancer on Oct. 5th. I had a complete hystorectomy on 10/28. That was a long wait. My file was sent to one oncologist, a week later I found out she no longer worked at the clinic and no one notified me. Not an awesome way to start. In retrospect, I do consider that as a blessing, because my illness has turned out to be a bit more serious than first anticipated. I elected to go to Seattle Cancer Care Alliance.

After my hystorectomy, my doctor informed me two lymph nodes were enlarged and the cancer had invaded the cervix. The cancer had "eaten through" 1.7 cm of my 1.8 cm uterine wall. Unfortunately, my uterus was ripped during the davinci surgery. I feel like I can't blame the doctor at all because I was so close to utter disaster. The good news was the lymph nodes and washings had no cancer cells. "They" did however find an enlarged mass on my collar bone on my post-surgery CT scan. I was scheduled for a PET/CT scan on Nov. 30th. The results were mixed, to say the least. You know it's not awesome when your gynecologic oncologist from one of the top cancer centers in the country starts with "I don't know what to make of this." There were "hot spots" in two lymph nodes. One in the upper aortocaval region and one in the iliac region. They are stated to be "highly suspicious" for metastic lymph nodes. Luckily, the area on my collar bone was nothing and I had no masses anywhere else in my body. They did find faint uptake in a tiny area in my right breast. I am going to see the breast specialists, just to keep an eye on it. They do not think it is a tumor.

I guess my question is, am I Stage 3 now? My doctor says I am still Stage 2, but this doesn't sound good me. I start chemo this Friday. My doctor also says CA 125 is not reliable so we will not monitor my numbers. After my six rounds (three weeks apart) we will do another PET/CT scan. He also plans on radiation for me.

Needless to say, this is taking a huge emotional toll on my family. Especially my nine year old son. I've already cut my long hair off because that seems to be his biggest worry. He says it will remind him all the time that I have cancer. I thought giving him the opportunity to see me with very short hair might help him emotionally.

Of course, the news doesn't end there. My tumor also demonstrates genetic malfunctioning. I may have Lynch Syndrome. I have to have genetic testing to determine if I do.

I'm just looking for any advice, comfort. I also plan on starting the anticancer diet. I should say I am in excellent heatlh and had absolutely no risk factors for this disease, hence the genetic connection (perhaps).

Thanks for listening. I'm finding that even my very loving and supportive husband doesn't really like to talk about this with me and gets frustrated when I read these boards. Coping mechanism?

Thanks for listening,
Shell bug

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

It is very scary to be facing all the things we have to face and hear and then to worry about our children. I think it is good to talk about it openly. Your husband and son a scared of the unknown too.

Your idea of cutting the hair was brilliant, I think. And it sure does grow back. In the scheme or things, for me this was the smallest of problems. But it will be good to talk openly with your son about all this.

Three years ago I was staged 3a, grade 3 uterine papillary serous. Staging just gives the docs a starting point and then they go from there. I wouldn't be too concerned because it looks like you are getting the standard protocol (you can also check the National Comprehensive Cancer Network guidelines which most docs use - NCCN.com). Some docs routinely recommend radiation - mine did not. I also had lymph node involvement and got treatment for a recurrence last year.

You are younger than most here (I'm 64). I also had no symptoms or risk factors. I think the genetic testing is a good thing. I may be Lynch Syndrome (my father had colon cancer) and which I had the test since information is power and can calm the worry and uncertainty.

I tolerated chemo very well and worked throughout. It is doable. I have a few suggestions:
1. request a functional profile of your tissue. Not all docs do this routinely and it will help determine best treatment for you later.
2. lower your stress. A working mother is a superwoman. Do whatever you need to do to give superwoman a break. ASK friends and family to help - try not to be shy or embarrassed about this. Stress will feed the cancer.
3. try not to get too far ahead of yourself - things will work out. I know that may be hard to believe. I did my share of crying and worrying and it really didn't help all that much. Stay in today and believe that YOU are NOT cancer!!!
4. Be your own advocate, keep copies of records, ask questions. Re: CA125 - it is not reliable for all but for me it is. Why is your doc saying it is not reliable at this stage? I also get HE4 test along with the CA125.
5. Listen to your body.

It sounds like you are doing so many things right - the diet changes, reacing out here, tuning into your child's concerns. Giving you a cyber (((HUG))).

Stay in touch with us. My best wishes to you, Mary Ann

Shell bug's picture
Shell bug
Posts: 68
Joined: Nov 2011

Thank you for your advice Mary Ann. I will certainly ask about the CA 125. I feel like my doctor tries to protect me on some issues, and maybe this is one of those times. I would still like to have the information.

I am also letting people help me, thanks to your advice. My good friend asked if she could take me to chemo, and I simply said yes. I knew it would be a hard day for my husband to take off of work.

Yesterday wasn't nearly as bad as I had envisioned. The nurses were very lovely people. I am going to preserve my strength this weekend and hopefully return to work on Monday. We are on Christmas Break after Wed. so I don't wnt to use any unneccary sick days. I have two boys and my leave was wiped out with having my youngest who is three. I have learned a woman can have kids or get sick but she can't do both unless the kids are older. Things will work out. My very generous coworkers have donated some of their sick leave to me. I am so thankful for my support system, even though my family lives 2000 miles away.

Again, thank you for sharing your support and wisdom. I know your cancer type is a serious one, so I will send some positive thoughts your way each day.

Rachelle

irislover
Posts: 1
Joined: Dec 2011

I just found out stage3 on November 21. I have to wait 8 weeks to start chemo as recovery from hysterectomy. I understnd the husband dilemma, mine is the same way. Doesnt want to admit your sick and getting tired of asking/answering questions about it- Take a mental break for yourself and for him. Remind him that your a team and you can win the battle together. We're fighting MS at the same time and you can win. There are alot of people behind you, we are here. I will write anytime.

Shell bug's picture
Shell bug
Posts: 68
Joined: Nov 2011

Thank you so much for the reply.

I am feeling better emotionally today. I had my first chemo yesterday and my very good friend went with me. She was so wonderful, the nurses were fabulous too and we laughed the whole time we were there. What amazing people are called to help us.

Physically I am doing well, but have heard stories of people overdoing it the first day or so after chemo, so I will try to avoid doing that.

I cannot believe you have to battle this and MS iris. My friend and I where discussing similar topics as we have both had ubbelieveable things happen to us in our lifetime. One begins to question why me and begin to scream enough is enough already. I guess I am just saying, this certainly isn't fair. I will be thinking of you each day.

txtrisha55's picture
txtrisha55
Posts: 432
Joined: Apr 2011

My best friend went to chemo treatments with me. We took cards and played Canasta. We took water, sodas and snacks. Watched TV and movies. Laughed a lot. It did help to pass the time and keep your mind off what was going on. I like your nick name as my best friends daughter is a Shellye and we always called her ShellBell. Sorry you had to join this web site and join the cancer sisterhood, but good luck and it will get easier. trish

Shell bug's picture
Shell bug
Posts: 68
Joined: Nov 2011

Thank you so much for the reply.

I am feeling better emotionally today. I had my first chemo yesterday and my very good friend went with me. She was so wonderful, the nurses were fabulous too and we laughed the whole time we were there. What amazing people are called to help us.

Physically I am doing well, but have heard stories of people overdoing it the first day or so after chemo, so I will try to avoid doing that.

I cannot believe you have to battle this and MS iris. My friend and I where discussing similar topics as we have both had ubbelieveable things happen to us in our lifetime. One begins to question why me and begin to scream enough is enough already. I guess I am just saying, this certainly isn't fair. I will be thinking of you each day.

Shell bug's picture
Shell bug
Posts: 68
Joined: Nov 2011

Thank you so much for the reply.

I am feeling better emotionally today. I had my first chemo yesterday and my very good friend went with me. She was so wonderful, the nurses were fabulous too and we laughed the whole time we were there. What amazing people are called to help us.

Physically I am doing well, but have heard stories of people overdoing it the first day or so after chemo, so I will try to avoid doing that.

I cannot believe you have to battle this and MS iris. My friend and I where discussing similar topics as we have both had ubbelieveable things happen to us in our lifetime. One begins to question why me and begin to scream enough is enough already. I guess I am just saying, this certainly isn't fair. I will be thinking of you each day.

imackie48
Posts: 93
Joined: Nov 2011

I just had my port instilled thurs, can you believe they would give me any pain meds, after the movacaine wore off, it was throbbing so bad, I was crying, I thought to my self, what is wrong with these people , I'm only 5 wlks post op hysto, and no med. the nurse says take Advil. I never took any narcortic so I don't have a history of any abuse. any thoughts or your experience with the port.
Irene for CT

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

Hope you are feeling better...I never had a port for my chemo, so I cannot offer any comparisons....if ever you feel the solutions they offer do not work for you, keep pushing for what you need. You should let your doctor know....

Laurie

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

My port didn't hurt at all.

Linda P. said wearing a bra all the time helped her. I don't need one so maybe that makes a difference?

I'm sorry for your pain and suffering--are you better now?

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

They didn't give me any pain meds either...so annoying. I got more pain meds when I had a tooth pulled right before I started chemo. Do you have any meds left from your surgery? That might be one reason they didn't give you more. They figured you had enough.

I didn't have the throbbing pain you are describing but I did have pain, especially at night for the first week. I found Ibprofen PM worked great at night...knocked me right out. Don't worry the pain won't last and you will be happy you got your port.

Take care,
Cindy

imackie48
Posts: 93
Joined: Nov 2011

Hi Cindy, I only was given Percocet for three weeks post op, then they gave me 10 pills of Vicadan, I've never took any pain meds for anything, I can't take Advil it kills my GI tract, gas,,, how can a person heal if there in pain, it's true about being thin there no skin to stretch.
Ice is my best friend today.
Thanks for your input it means a lot to me.
Irene

laura25's picture
laura25
Posts: 160
Joined: Mar 2011

I also had a hard time with the port. It felt like I got hit in the chest with a speeding baseball! I also had a hard time sleeping on that side and moving my arm the first week. The pain did get better with each passing day and wearing a bra all the time helped. I was 4 weeks post op from my hysto/laparotomy and thought the port was going to be a breeze.

The Dr. said it hurts more with thinner patients. I guess because they have to stretch the skin more?
I'm sorry that you have to go through this...

txtrisha55's picture
txtrisha55
Posts: 432
Joined: Apr 2011

I was exactly 3 weeks post surgery when they put my port in and then went straight to Imaging and had a CT scan the same day. Port in the AM CT Scan in the PM. They gave me just a local to do the surgery, I still felt everything they were doing. I did hurt for a few days but I am a big girl with lots of extra skin. This was done in Apr this year and I still have my port which has some twinges occasionaly, but not to bad. I know that it was much better having the port then having them stick a needle in me every time as I hate needles. They gave me no meds after the port surgery, I did have Hydrocodine from the hysto surgery and still have some. Most the time I just take Advil PM if hurting, and usually just at night. Just taking advil usually helps as I take it for other aches and pains not related to cancer. Sorry you are having to go through this but it will get easier and hopefully not take a long time. I have a friend here at my work, where I had MMMT stage 3c1 she had 2a Ovarian Cancer. We went to the same cancer center here in Dallas. She has finished her chemo (same treatment as I had) but her Onc Dr said she can have her port out in Jan. My Onc Dr said I had to keep mine at least till June 2012. Different treatments for different folks and different cases. Good Luck on yours. trish

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