New to the Network --- Have a Question

AmyByTheSea
AmyByTheSea Member Posts: 6
in Uterine/Endometrial Cancer #1

Hi lovely ladies.  New to the boards.  Brief history on me:   I was diagnosed with Stage 3A grade 3 uterine cancer last May.  End of Feb (week after my 42nd birthday), I started bleeding profusely.  26 clothes changes in 3 days.  I basically would bleed out every time I stood up.  Insurance finally kicked in on March 1st and after a visit to the doctor I was hospitalized for 2 days of blood transfusions as my hemoglobin was 6.0.   I had a D&C performed on 3/15/16.  My doctor told my husband that things looked 'bad'.  The lab results came back normal.  (This was a great shock to my doctor).  When I saw her for a 1 week follow-up, I stillh ad a great deal of pain and I was still bleeding daily.  (Not as bad as before, but I shouldn't have been bleeding at all).  As a precautioni she referred me to a Gyno/Oncologist.  Upon examination, he scheduled me for a hysterectomy (everything taken) just a few short days later.  My surgery took twice as long as expected due to the amount of growth and tumors found.  Part of my stomach wall had to be excised because of the growth so deep into the tissue.  Pathology showed that it was cancer--- spread from my uterus and covering my ovaries. I had my port procedure a couple of weeks after diagnosis and began chemo.  I went through chemo, 6 weeks of external and then internal radiation, followed by more chemo.  I finished my chemo in December and mid-Jan I was told that I was now 'dating' NED. 

While I am beyond thrilled to be at NED status, I feel that recovery has been excrutiatingly slow.  My fatigue level since my last chemo has been extreme.  (And I still worked a full-time job all throughout my treatment).  I am also experiencing A LOT of swelling.  Some in the face and hands, but mostly in the legs and feet.  Is that common for anyone else?  My hair is finally starting to grow back a little bit, so I'm happy for that progress... I just wish I could feel more like my old self.  Is there such a thing as feeling like your pre-cancer self again?

Don't get me wrong... I'm a happy person.... I'm grateful to be so blessed to be at NED status....... just looking to see if others are experiencing the same as me.... and, if so, if there are things that help. 

Thanks for listening.  Hate the reason that we all have to be here, but so glad that we have others to reach out to that understand. 

~Amy

Comments

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    #2
    So sorry

    That you have to join this club that no one what's to belong to.  You have found a good place to come to.  The ladies here are wonderful.  Everyone is will to share advise, information and comfort.  You have been through an awful lot, so don't push your self.  It really does take a long time to completely recover.  Fatigue stays a long time.  You are at the point that hair does start to,grow back, but don't be surprised if it is a different color and texture.  Mine came in very curly, I always had very straight hair.  Enjoy the our dance with NED.  I hear he is a good dancer.  You are one strong lady so,use be patient, your strength will return.

    Hugs and prayers, Lou Ann

  • Nellasing
    Nellasing Member Posts: 528 Member
    edited March 2017 #3
    Welcome Amy

    So very sorry you have been through such a lot and so young!  Happy to hear you have made it to dancing with NED! 

    I am 3A-3 but endometroid andenocarcinoma so our experience is different.  I had 6 rounds carbo/taxol but declined the radiation as they wanted to do 6 1/2 weeks daily and the research here and other experiences lead me in another direction.  I finished treatment Sept 21, 2016 and I too have been dealing with extreme fatigue and not only swelling but weight gain which is very frustrating.  The word I am getting back is the swelling could be from the amount of nodes removed- could be from healing of the body, could be from steriods given during treatment, could be from treatment drugs.... on and on.  I have been told that it can take a year to a year and a half to feel "normal".   My hair started coming back pretty good by Thanksgiving but still wore a wrap and by Christmas I had very short but real hair ;)  I stopped wearing wraps just after the new year and my hair is about an inch long and SUPER CURLY- look like a poodle but I am NOT complaining... lol.

    I am still working with a Naturopath, acupuncturist and IV therapist who have been helping me with all the above.  We are now trying Poly-MVA and it seems to really be helping with energy and the neuropathy that is left- mostly in my right foot- toes.  I eat organic, drink 1/2 my weight in filtered water, no meat, dairy, grain or sugar, exercise daily and have worked my way up to over 10,000 steps per day 7 days a week.... at my pace and partially on my rebounder.

    I know the others will be along soon.  They all have amazing advice and wisdom.  Looking forward to linking arms with you and walking along together.  (((HUGS)))

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #4
    Hello Amy

    Amy, sorry you had to come here, but welcome.   There are so many amazing women on this site, just like you.  You've been through so much.  As I would call it, you are now at the point known as the NEW NORMAL.   Unfortunately fatigue plays a big part of it.  Of course, everyone is different and it takes awhile.   I had surgery (for a non-cancerous event) back in December 2015.   It wasn't until August of 2016 that something clicked and I said "wow" I think my fatigue has finally passed.  8 months.   It does come and go though and stress can be a factor.  That is why I say THE NEW NORMAL.   We all go through that depressing part of who we once were, but as you will see there is such an exciting new you happening.   New friends to meet.  New things to experience.   

    Hang in there, Amy.

    Hugs.

    Kathy

     PS  I was 45 when first diagnosed (I'm 56 now!)

  • cindy0519
    cindy0519 Member Posts: 173
    edited March 2017 #5
    Welcome!

    Just wanted to say welcome and you certainly are not alone in finding recovery slow.  Hang in there....it will get better. Unfortunately it just takes time.

     

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    #6
    Welcome Amy. Glad you found

    Welcome Amy. Glad you found us. I finished Chemo 12/21/2015 and Brachy Therapy 1/28/16. It takes a LONG time to recover from what we put our bodies through. I'm impressed that you were able to work while going through treatments. Many women on this board did that. I could not have worked. No way!

    You will most likely notice significant changes in your energy level at about 6 months. That isn't to say you will be at a normal level yet. Just that you won't feel so tired. I am now over a year out from treatments and feel like I'm back to normal. What I noticed over that first 12 months is that I had some decent days and then I had days where I felt a need to nap a lot. Give yourself time. Be kind to yourself and know that you will find yourself sooner than you might think. Something good came out of all of this for me... I learned that things didn't have to always be done asap. I take my time with projects these days and really do enjoy getting things done at a slower pace.

    I remember barely being able to do one lap around my yard. Now, I walk 4-5 miles a day. You will get there!!!! :-)

    Please come back and let us know how you are doing. Also, feel free to ask anything. Someone will come along with an answer and nothing is off limits.

    Love and Hugs,

    Cindi

  • Soup52
    Soup52 Member Posts: 908 Member
    #7
    Welcome to the group no one

    Welcome to the group no one wants to join! We are all hear for you. It has been amazing that you were able to work during treatment and you have been through so much. Yes, energy will probably take some time. I am much older than you, 64 and I can say I don't feel like I'm quite back to where I was before cancer, but some of mine could be my age also. I finished treatment the end of June 2016. You will get there! 

  • Kvdyson
    Kvdyson Member Posts: 789
    #8
    Amy, congrats on getting

    Amy, congrats on getting through your treatments and reaching NED! I agree with Nellasing that the swelling you're experiencing sounds like it may be related to lymph node dissection during the hysterectomy.

    Did you have any lymph nodes removed? If so, I understand that there are massages that you can do to help relieve some of the swelling or compression socks that you can wear that may help.

    Good luck to you and keep us updated on how you are doing. Kim

  • janaes
    janaes Member Posts: 799 Member
    #9
    Welcome Amy, I was 43 when I

    Welcome Amy, I was 43 when I was diagnosed with this cancer.  Our time frame is pretty simmilar.  It was New Years eve 2015 that I started blood clotting. More than I ever have.  It scared me.  I was in bed all day cause when I got up I would clott.  The clotting did slow down after a couple of days and had a sonagram done twice which led to a biopsy in April 2016 that discovered the cancer.  After my hysterectomy in May, I started chemo in June and did internal radiation in October.  I admire you that you were able too work the whole time.  I ended up taking some time off.  I so glad you reached the recovery phase.  It is a challenge sometimes, but I was so glad every time i was able to do things again.  I am not tatally better.  I still have joint pain and neropathy, but like you, am still glad I am where I am at most of the time.  Thanks for sharing your journey with us.

  • beccabtown
    beccabtown Member Posts: 234
    edited March 2017 #10
    Hello Amy

    Welcome to this group, which is a tremendous source of information and support. I'm sorry to hear about everything you've been through in the past year. My timeline is similar to yours: cancer diagnosed last April (stage 3C2, grade 3 UPSC); hysterectomy in May; chemo and internal/external radiation on the sandwich regimen. I finished chemo December 22 and found out the last week of December that there was no evidence of cancer.

    Since finishing chemo, however, I've suffered more than I did during treatment. I had terrible leg pain for a few weeks, then started having both pain and numbness (somehow) in my feet. Gabapentin has helped with the pain but hasn't eliminated it, and I'm quite wobbly. Walking with a cane. My feet have started swelling and I'm concerned that it may be lymphedema. My doctor says that in six months or so we'll know if the neuropathy will go away or if it's something that I must learn to live with.

    Things like low blood counts and potassium levels (I've had both in the past few months) can make you feel fatigued and out of sorts. Have you had blood work done since finishing chemo?

    I also think the psychological burden seems greater after treatment. During treatment, you have a schedule and a set of goals, and get a lot of support and care from doctors and nurses. After treatment, you have to start learning to live with the possibility of recurrence.

    I've been happy about getting back to working full-time and am still hopeful that my leg problems will go away soon.

    I hope at least some of this is helpful. Please keep us posted about how you're doing.

  • AmyByTheSea
    AmyByTheSea Member Posts: 6
    #11
    Thank you... :)

    I just wanted to say 'thank you' for all of the comments.  While I hate that there are people who understand, I'm also so thankful that there are people who understand. 

    I feel like life- since my treatment ended 3 months ago- has been more difficult than it was during treatment.  During treatment, I came to know the effects that the chemo and radiation would have on me and how long it would last.  The pain from the neuropathy, the unsteadyness on my feet,the swelling and the incredible fatigue are still a daily battle.  I guess I had hoped to feel more progress than I do at this point.  My doctor told me to be patient.  Guess I haven't been so great at that.  :) 

    Thanks again for the encouraging words.   I'm happy to have found this group.

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