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Carcinosarcoma presumptive 4B

LouDy22's picture
LouDy22
Posts: 8
Joined: Apr 2021

O boy where do I begin ? I been looking at this page since March 24 everyday for hours at a time so I decided to just join and hopefully find some comfort . My mother was diagnosed with Uterine Carcinosarcoma and it feels like my heart and soul have been ripped from my chest , i don't want to take to anybody and I am just numb and full of anger , I am an only child and my mother is my everything and if not for my loving wife and 4 great children I don't think I would have been able to handle this . Mom is relatively young and in great shape and was in great health until she went to the Dr complaining about stomach pain , they found a mass in her uterus they thought was a fibroid but turned out to be Carcinosarcoma which was the most devastating news I have heard in my 36 years of life , how can this happen to such a strong big hearted person who does everything for everybody? Its just not fair . She went for surgery for a full hysterectomy but upon investigation they decided to stop surgery and go with something called Neo Adjuvant chemotherapy followed by debunking surgery because the mass was to big to safely remove. Is this normal ? Has anybody ever gotten chemo before surgery ? She is getting 3 cycles of Carbo/Taxol and then being remeasured in hope the tumor has shrunk .

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1744
Joined: Jun 2015

LouDy22,Welcome to our board. So glad you decided to post. While this is a scary time for all of you, I'm glad your mom has you for support. I did not personally have chemo prior to surgery but I remember several on this board that did. Hopefully, someone will come along soon to share with you. Please know that there are many tools to help survive this cancer. Chemo and radiation to begin with and immunotherapy if indicated down the road..... and lots more.  I hope you come back and let us know how you and your Mom are doing. Feel free to ask anything. We are a sharing bunch and someone most likely will have answers to your questions.

Love and Hugs,

Cindi

LouDy22's picture
LouDy22
Posts: 8
Joined: Apr 2021

Thank you for the support as I really need it , I can't even go to work because I still can't wrap my head around how this can happen to such a great great great person , good news is we actually sold out home on Long Island and bought a house in NC and we will be 5 minutes from her and the grandkids really cheer her up , I will continue to post updates , she had started chemo on Monday and had a port put in today 

ConnieSW
Posts: 1546
Joined: Jun 2012

I have only a few minutes to write right now but I wanted to welcome you.  Others will be here soon.  It has been over 9 years since I was diagnosed and treatment started but I still clearly remember the numbing shock.  Things will start to fall into place.  To answer your main question, there are times when chemo needs to be started before debulking surgery can be down. I'm sorry, I have to go now.  

LouDy22's picture
LouDy22
Posts: 8
Joined: Apr 2021

Thank you  Connie

cmb's picture
cmb
Posts: 645
Joined: Jan 2018

I'm sorry to learn about your mother's cancer diagnosis. A late stage cancer diagnosis is always a shock. Your concern and worry are very understandable.

Neoadjuvant chemotherapy is often used to initially shrink large or distant tumors before surgery. Paclitaxel plus carboplatin are usually the first combination of chemotherapy drugs that are used for women with all types of uterine cancer.

The fact that your mother is otherwise in good health means that she should be able to tolerate the neoadjuvant chemotherapy more easily than women with more pre-existing conditions.

I was diagnosed with carcinosarcoma, Stage 3B, in 2016. While I was able to have initial surgery to remove the visible tumor, my medical oncologist devised a two-phase chemo plan with the first phase being paclitaxel plus carboplatin and the second phase being Ifosfamide and Doxorubicin.

So if the recheck after your mother's three chemo treatments doesn't show an improvement, there are other chemo drugs that can be used.

If this hasn't been discussed, I recommend asking if her doctor has done or is planning to do any genetic testing. Inherited genetic conditions like Lynch Syndrome are less common in carcinosarcoma (although I have it), but they do occur and can provide immunotherapy options that can work better than chemo for some people.

Please check back in with use with any other questions or concerns you or your mother have.

LouDy22's picture
LouDy22
Posts: 8
Joined: Apr 2021

Thank you so much for your information ! I have read all of yours post and followed you religiously the last month ! Being you have experience with this type of cancer . We have compiled quite a list of questions we will be asking the Dr . I do have to give a lot of credit to Dr. Robinson and all the staff at the hospital and at the Zimmer . They have been super professional and extremely kind and made my mother's procedurea happen at a rapid pace . She is home right now resting after receiving her port this morning. I will keep you updated .

cmb's picture
cmb
Posts: 645
Joined: Jan 2018

It is fortunate that your mother has a good care team who is acting expeditiously with their recommended treatment plan. To their regret, not all the women here have had such a prompt initial response.

And, as you say, the timing of your home move couldn't have happened at a better time. I'm sure your mother will appreciate all the support you can give her right now.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2878
Joined: Mar 2013

LouDy22, a diagnosis is certainly overwhelming to eveyone - not just the patient but the entire family!  We all need an advocate when we can't be our own, and it sounds like you will be wonderful support for your mother in this journey.  

So many wonderful ladies here with so much to offer, and cmb is one those who is always posting what she finds.  

I would encourage you to continue to post.  Let us know what is going on, if you have questions...it is a group to help the entire family.

LouDy22's picture
LouDy22
Posts: 8
Joined: Apr 2021

Mom recieved her fist chemo treatment on Monday and tolerated it well from a medical standpoint I assume and also had a port put in Wensday so I guess between the chemo and the anesthesia she was just out for the count thursday and Friday , I mean she just slept , this morning Saturday May 1 she woke up feeling a lot better and even took a walk to the coffee shop with my father which made me a little happy ...... We have a long journey Ahead and my family and I and my mothers 4 young grandchlisten will be with her every step of the way .

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2878
Joined: Mar 2013

Lou, no doubt you have read all the posts and seen all the side effects of treatment so you will be loaded with suggestions for your mother.  None of walk this journey alone.  

MelissaJA's picture
MelissaJA
Posts: 24
Joined: Oct 2020

Hi Lou, 

I have been battling stage 4b CS for about 6 months now and have been in contact with many women who also have.  It is common to have chemo before the surgery.

This cancer is survivable.  I have been working with 2 oncologists and they both give me a 50% chance of never having a recurrance.  Keep up the hope!

I highly recommend that you join the CS Facebook group which is very active and will answer many, if not most of your questions.  It has been a lifesaver for me.    https://www.facebook.com/groups/carcinosarcoma

All the best, 

Melissa

 

 

LouDy22's picture
LouDy22
Posts: 8
Joined: Apr 2021

Omg you just made my day ! any glimmer of positivity and hope really can take that anxiety feeling out of your chest , please keep me updated with your treatment as I will be praying and rooting for you as well

MelissaJA's picture
MelissaJA
Posts: 24
Joined: Oct 2020

Glad I could make your day!   Keep the faith.  Nothing is more powerful than a positive outlook!

txtrisha55's picture
txtrisha55
Posts: 688
Joined: Apr 2011

There are a lot of ladies, men, family and caregivers on this site. There is also lots of information here. One thing I have found is cancer does not discriminate against anyone. I was 55 when I was found to have Uterine Carcinoma Sarcoma Cancer. I went straight to surgery within a week of the results of a D&C. After surgery, the pathology report found Stage 3C because it had spread to a lymph node and not contained to just the uterus.

I had 6 weeks of Carbo/Taxol, every 21 days. Aug 22, 2021 is my 10-year anniversary from the last chemo received. I did not have radiation, as my Dr said she would save that if there was a recurrence. I have not had one....yet. I refuse to say I am clean because I do not want to jinx it but I am a survivor of it today.

Your Mother sounds like a great lady and she is lucky to have her family around her to support her during this journey. Everyone is a statistic of one. What I went through and what each one of the ladies on the site have gone through, will not be what your Mother goes through. Will there be somethings that are the same yes. Like the side effects of Taxol is losing all body hair. I do not know what the climate is in NC at this time going into summer but in TX 10 years ago it was hot and got hotter through that summer. I just went total bald because hats, scarves, and wigs were just too hot for 100-degree TX heat. I know for some women it is traumatic for them when they lose their hair.  It takes about two weeks for the hair to start falling out.  I would suggest ask if she wants to go to a salon to get it cut shorter before that happens, make a day of it. All the ladies in my family went and got their hair cut the same day I cut mine from long to short.

Tell her there are people of this site that are praying for her and the family to remain strong, have positive attitude and hit it head on and fight with everything she has. Praying for you all from TX. trish

LouDy22's picture
LouDy22
Posts: 8
Joined: Apr 2021

Txttrisha55 Wow I just read your bio and it bought tears to my eyes ! Not bad tears but happy years! So happy you are 10 years NED with this shitty form of cancer ! You really give us hope and inspiration

LouDy22's picture
LouDy22
Posts: 8
Joined: Apr 2021

Mom just had her second chemo today , besides the fatigue she is doing very well

cmb's picture
cmb
Posts: 645
Joined: Jan 2018

When I began chemo my oncology nurse told me that the side effects I had initially would usually be the ones that I would have for all subsequent treatments. This hasn't been true for everyone here, but it was for me. It made it easier to get through the weeks of chemo when I could anticipate the bad days and good days and plan accordingly.

I hope your mother continues to do well.

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