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Mom diagnosed with Stage-3 advanced endometrium cancer

Mom diagnosed with Stage-3 advanced endometrium cancer

Posted by Sabrizvi on Feb 13, 2020 3:47 pm

Hi Folks, 
Mustering the courage to initiate discussion on my mother's recently diagnosed endometrial cancer. Dec 6th 2019 morning we rushed mom into ER, for abnormal vaginal bleeding she experienced the morning of. She described it as uncontrollable bleeding moment she got up and started walking. Anyways, ER doctors did a trans-vaginal ultra-sound, only to find a 5.7 cm mass growing in her uterus, primary diagnosis was an endometrial carcinoma. ER doctors couldn't do anything until biopsy diagnosis, sent her home with TXA acid to control bleeding temporarily. It was before Christmas break, and hence the dreaded delayed procedures at hospital. Biopsy revealed cancerous growth in uterus. Surgery was scheduled for January 13th at CVH. Her surgery went on for a good 8 hours ( tough woman there really). The operating gynae surgeons said her uterus was 2 to 3 times enlarged, she had swollen ovaries, and few pelvic lymph nodes in the right and left that were also not normal and needed to be extracted. She underwent a complete hysterectomy (I think her cervix was not completely removed though). I recall being terrified the day of surgery when it went on for that long. There were a few complications as well, where her right ureter was damaged during uterus extraction , and urology team had to be brought in to stitch it back to the bladder. She had few complications too post surgery during recovery, swollen ureter of the left kidney ( which was NOT operated) - doctors said was due to stent insertions in BOTH ureters that urology team typically performs during ureter re-construction. She contracted urine infection as well, and had to go through the whole IV antibiotics while in hospital - she ended up staying for 2 weeks post surgery.

Her pathology results are now out and shows she has got stage-3, advanced cancer of the uterus. (The doctors weren't able to distinguish whether the cancer originated from ovaries or uterus as both appear to be abnormally enlarged during surgery..but are favouring endometrium cancer). She is going to start chemo on Feb 21st.

I am 29 yrs old, self-employed and struggling to manage work, while digesting this news and at the same time comforting my 61 yr old mother that she will be just fine. I am living with her until her treatments are done (they said 3 cycles of chemo + radiation + 3 cycles of chemo).  I am confused, frustrated, scared, upset and anxious and totally lost in terms of what to expect for her chemo and the side-effects she will experience. I plan to stay off from work at-least for the first couple of chemo sessions.  Deep down inside of me I am dreading the side-effects she will experience, most importantly her cancer spreading elsewhere, as the oncologists were not confident when we asked them if the cancer that has the potential to spread will be completely eliminated. They said they don't really know and only post chemo imaging and scans will dictate the spread.... They weren't able to give us a comforting answer on the survival factor, so we are even more in doubt...

My mom went through a right breast lumpectomy in 2017 when they had detected a small lump in her right breast ( thank God it was during early stages). At that time she only needed radiation, then she was put onto the drug tamoxifen to prevent recurrence of breast cancer. And 2019, we have a new cancer origination in her body. None of us are able to understand what even caused this endometrial cancer growth to start. She is a strong woman, but all of the mental trauma from surgeries and her past and present conditions has really drained her mentally. 

I thought I would post in this community to get some tips on how to cope with mom's illness, any information that could be of help to me as her primary care-giver, past cancer survivors who can provide some support, kind of foods to give her during chemo and after, most importantly what to anticipate next perhaps so I can better plan out my work schedule around her treatment. Anything really, anything comforting would help :) 

Thanks - looking forward to hear your responses.
 

Re: Mom diagnosed with Stage-3 advanced endometrium cancer

Posted by Wendy Tea on Feb 13, 2020 4:05 pm

Sabrizvi‍  Welcome. I am sorry your mom has another cancer but gosh she is so lucky to have you with her. Please remember to take good care of yourself because I found I need to look after myself or I fail at helping others. 
It is ok to be happy, sad, and mad here because we understand the joy, anger and frustration.  One thing I felt helped was keeping notes or writing a journal. You will want to keep track of appointments,  dates, time, with whom, what was said, what was done, and the next step. Also keep a note of every side effect.  You might find it helpful to make it part of a routine every day. I found if I told my doctor everything then he could decide what was important. 
I am sure you will find useful information here. Ask lots of questions.  We are here to help.
Healing takes time and opportunity. Wendy Tea

Re: Mom diagnosed with Stage-3 advanced endometrium cancer

Posted by Sabrizvi on Feb 13, 2020 5:01 pm

Hi Wendy Tea‍ , thank you so much for the reply and your kind words. It definitely feels re-assuring to be part of a community where people share similar experiences..

I will definitely consider the journal idea, as I find it so hard to keep track of her appts, meds, etc. Especially now that chemo is about to begin...

Do you have any tips in the diet to include - mom is diabetic (controlled with pills as needed). Obviously, we have to wait to see what she likes and she doesn't only after chemo begins.. 

If you don't mind me asking Wendy Tea‍ , what kind of cancer did you go through?

p.s. so glad you are free from cancer, wish you very good health in the future too!

Re: Mom diagnosed with Stage-3 advanced endometrium cancer

Posted by Wendy Tea on Feb 13, 2020 6:19 pm

Sabrizvi‍  Hello, if you click on my picture you can read all about me. My mastectomy was on May 6.  I was lucky enough to skip all other treatments except a daily pill.

Please look through all the paper work your mom receives.  You should find lots of interesting facts there. The Canadian Cancer Society  has a booklet called Eating Well When you have Cancer. It even has recipes. Watching sugar and calories will make it more challenging.  Often mild flavors are more appealing.  Keep soups and smoothies in mind.
There is also a Group Eating Well if you click on the tab at the top.

Please stay in touch.
Healing takes time and opportunity. Wendy Tea

Re: Mom diagnosed with Stage-3 advanced endometrium cancer

Posted by Brighty on Feb 13, 2020 10:19 pm

Sabrizvi‍  welcome to cancer connection! !! Nothing can more devastating  then when a loved one is diagnosed with a life threatening  illness.    I'm so sorry you have to go through  this with your mom.     It's normal to feel all kinds of emotions  at this time and your moods can change. .. minute by minute.   Hour by hour.    The unanswered questions  and the uncertainty is something  all of us on the site can relate to.      You are an incredible and devoted daughter  and your mom is so lucky to have as her primary caregiver.      There are many ways to support your loved one going through this ordeal including driving and going to appointments. .. doing house work and cooking ....but most people will say the thing they want most is to spend quality  the time with the person.    In order  for you to be the best  you can be for your mom  ,
My best advise to you is to make sure you are taking care of yourself  too.  Can you share the caregiving tasks with anyone?  Do you have anyone  to talk to about your feelings?   A good friend  or a social worker?  As for foods to eat, most  hospitals  have dietiicans on staff  that will be able to advise your mom accordingly.     She would best stay hydrated for all chemo treatments.      We have a section in the forum called 'coping with a paren't diagnoses ' under 'forums'    we also have under forums a section on cancer types where you click on your cancer type and connect  with other members going through  similar  experiences.   I'm going to connect  you with a few members who may be able to help.
Lynda D‍ 
Ttjia‍ 
carjack87
SLM
‍ I apologize  my tag symbold is not working  so I hope the members I mentioned see this.     In the meantime just know we are here for you, whatever you need. .  Just ask for it and we will try and get you the support and resources you need going forward.    Glad you joined us.     Help is  now here.     


 
Help is out there. All you have to do is reach out.

Re: Mom diagnosed with Stage-3 advanced endometrium cancer

Posted by Ttjia on Feb 14, 2020 12:55 am

Sabrizvi. I can only imagine the pain you are going through watching your mom someone you love going through this terrible time feeling totally helpless and frightened. I myself had two cancers the first endrometrial cancer I had a total hysterectomy for the second and much more dangerous clear cell was found in the tissues taken at the time of my surgery, clear cell is equivalent to stage three cancer and is rare and agressive in my case because I had the surgery they found my second cancer before it had a chance to spread, I was given the choice of chemo with only a 9 percent chance or radiation with a much higher chance of success of course I took the 5 weeks 5 days a week treatments although they where ready to give me the chemo if I turned down radiation, The one hint I can give you for the radiation you must get the diet I did not have it to follow the first week and was very sick , threw up all over our brand new car. I ended up with a 3 hour saline infusion in the chemo section due to severe dehydration . I have a few side effects that have lasted a very long time in the bowel area. Right after radiation fatigue was the hardest to deal with . I am sorry I cannot help you with the chemo and it’s sideffects but there are many on this site that can. Try to think your mom will have a positive outcome it has been 3 years since my last treatment and I am still clear. We are with you anytime you need to talk or to vent . Charlotte. 
Ttjia

Re: Mom diagnosed with Stage-3 advanced endometrium cancer

Posted by Whitelilies on Feb 14, 2020 1:22 pm

Please allow me to simply send you BIG HUGS !
My name is Lillian.
Whitelilies

Re: Mom diagnosed with Stage-3 advanced endometrium cancer

Posted by Helentess on Feb 14, 2020 2:12 pm

Firstly, the doctors cannot guarantee that all cancer was removed during surgery and if/when it will spread or did spread beyond. They cannot give your mother false hope. Just be aware that during surgery, cancer cells may spread via the blood vessels etc. That is why chemo & radiation is offered. To kill the cells that may still be in the body. In my case, it was unfortunate that I could not have radiation, as this kills the cancer cells better than chemo (from I researched)..

Secondly, talk to the doctors/nurse about your mother's diabetes. My friend doing chemo is also diabetic and one of the anti-nausea drugs has sugar and it affected her during the treatment. The doctor may have to adjust the dose according to mother's blood sugar. Also talk to the dietitian or nutritionist at CancerCare about yours mother's diet and what food she should be eating during treatments.

Thirdly, read all the literature that doctors provided on the chemo drugs that will be used and the side effects. Keep a daily journal to record all symptoms, large or small. Have a digital thermometer handy. You did not mention what chemo drugs that your mother will be getting. I had Taxol/carbo. I was very unlucky during my first chemo treatment as, I had almost every side effect listed for both drugs as well as additional side effects of very high calcium levels in blood (caused by chemo drugs damaging the parathyroid glands).and blood clots. All those side effects happened on day 4 after chemo. I went into emergency 2 times in one week after first chemo and in hospital for 3 days to treat the calcium problem.. So be prepared with an overnight bag of extra PJ, robe, slippers for hospital. Be on alert for any side effects that may not be listed because everybody reacts differently to the chemo drugs.

Also, my dentist recommended Previ-dent 5000 toothpaste to use during chemo. It was great for me as it prevented mouth sores, dry mouth, and enamel loss. Also if you mother will lose her hair, have a lot of caps or hats on hand and a wig if she desires.

I survived the chemo treatments and doctor said no evidence of cancer in the CT scan. Unfortunately the cancer came back more aggressive after 6 months.. So I am doing another 6 chemo treatments from Nov 2019 to Feb 2020. This time I hardly have any side effects except for hair loss and being tired for a few days after treatment. The main issue was a lot of stomach pain after taking the anti-nausea pills on day 2 and 3 after chemo. My doctor said that dexamethasone is a steroid that caused my stomach pain. He told me not to take it and prescribed another pill for nausea. However, I did not have any nausea at all during these rounds of chemo so no need for any pills.

Just keep in mind if your mother has a lot of stomach pain in the days after the anti-nausea pills and talk to the doctor about it..

Hope this helps you and your mother and that chemo / radiation treatments are successful.. Take care.




 

Re: Mom diagnosed with Stage-3 advanced endometrium cancer

Posted by Tizzie 2020 on Feb 16, 2020 8:00 am

Hello Sabrizvi‍ 

So sorry to hear about your mom’s second bout with cancer.  As some of the others have said, your mom is blessed to have such a caring and compassionate daughter! 
I can relate to your story in some ways.  I too have a 29- year old daughter.  I received 2 cancer diagnosis in one month and I found that one of the hardest things was breaking the news to my children.  I tried to down-play it because they both live out of town and are working hard on starting their own careers.  I assured my daughter I’d be fine going through my mastectomy and there was no need for her to make the trip home.  To my surprise, she arrived 2 days before my surgery and what a difference that made!  Just having her around gave my husband and me so much comfort and strength.  It helped her too by giving her a better understanding of just what was happening to me and what to expect.  She has gone back now and I know it is hard for her to deal with my health issues long distance, but I know it’s important for her to maintain a balance and also look after herself.  I hope you are able to do that too – balancing looking after your mom, and at the same time, taking care of yourself too.  Sending best wishes to you and hoping that everything goes well with your mom’s treatment and recovery.   

Re: Mom diagnosed with Stage-3 advanced endometrium cancer

Posted by Jlo on Feb 16, 2020 4:43 pm

Hi: Sabrizvi

I am a 2 + year survivor of Stage 4 serous endometrial cancer.  I know what you are going through.  Your emotions are all over the place especially after your mom is already a breast cancer survivor, and had complications with her surgery.  There are no answers why we get this disease.  I was very healthy prior to my cancer diagnosis.  Oncologists don't want to make any predictions as each case is different.  My suggestion to you is just be there for your mom.  Give her hugs when she needs them.  I was able to do some counselling through my cancer centre and also got a referral to the dieticians so I knew I was on the right track with my diet.  More fruits and vegetables is one of my suggestions.  I read some good books from the cancer library, some were available  online.  I didn't have a lot of symptoms from chemo, just suffered from fatigue and loss of stamina.  I did have slight neuropathy in my hands which returned to normal shortly after treatment.  The nurses help line was very good and the nurses at the cancer centre were great.  I wish your mom the best with her treatments.  Stay positive and you will get through it.

please reach out if I can answer any questions or message me.
Best regards

joan

Re: Mom diagnosed with Stage-3 advanced endometrium cancer

Posted by EBB91 on Jul 6, 2020 9:11 pm

Hi Sabrizvi

First off - I am so sorry to hear about your mom's diagnosis. I am wishing her good health and a speedy recovery. It sounds like she's in great hands having you there to look after her too. 

I'm in a similar boat as I'm 28 and my mom was diagnosed with stage 4 Clear Cell Endometrial cancer last year. A bit about her history: she was diagnosed with and beat breast cancer in 2011. Then in March 2019, she was diagnosed with metastasized breast cancer and went through 6 months of weekly chemo, only to find out that she had been misdiagnosed and actually had stage 4 endometrial. I was finishing up grad school out east when we got the news but I moved home to Vancouver after we got the news and have been living at home with my parents since then to help take care of my mom as she has gone through various chemotherapies. None have worked so far and so we just started immunotherapy (Keytruda) at the end of May and are hoping for the best. The combination of treatment side effects and cancer symptoms has gotten quite severe over the last month. 

My advice to you would be to make sure you take care of yourself - easier said than done I know. But setting aside time for a quick meditation in the morning and evening, a walk or a long bath, anything to pamper yourself and feel good (even just momentarily) can make the days a little more bearable. Also having a good network of friends or loved ones you can speak to openly and vent without worrying that you are a burden, etc is a huge help - they can also serve to bounce ideas off of if you're having doubts or concerns about the advice your mom is getting from her oncology team. And lastly, I've found counselling to be really beneficial. The BC Cancer Agency has a great counselling team - I've met with a counsellor a couple of times already and it was probably the single most effective form of help I've come across so far. 

I also feel like one of the worst aspects as a caregiver is the feeling of powerlessness, so seeking out your agency where you can find it is really empowering. Looking into complementary therapies, reading and educating yourself so you can advocate for your mom or ask questions when you meet with her oncologist, for example, or cooking cancer-fighting meals (typically low glycemic), and generally just coming up with a plan with your mom about how both of you want things to go and what you are/aren't willing to do (ie: some chemos with low odds of working, etc). 

I wish you and your family all the best and pray for a positive outcome. I'm new to this forum too but it seems like there is a great community here to provide support. XOXO. 

Emily 

 

Re: Mom diagnosed with Stage-3 advanced endometrium cancer

Posted by Jlo on Jul 8, 2020 8:47 pm

Hi Sabrizul:

Hi, I am a Stage 4 serous uterine cancer survivor and am 2.5 years in remission.  There is hope.  I was diagnosed in 2017 at age 67.  Like your mom my oncologist would not commit on survival rates, yet my surgeon was more positive.  Your mom is so lucky to have you there to help as she has been through a lot.   

If you can help keep track of your mom's appointments and help her get there or arrange transport that is so helpful..  Keeping track of her meds is important.  I kept track of my daily symptoms and summarized them for each appointment prior to chemo.  I had 6 rounds, but no radiation.

The nurses wanted to ensure I was eating enough protein and suggested lots of fruits, veggies and water is important.  I got a referral to a dietitian through my oncologist and had some counseling as I know how your mom is feeling.  

After round 3, the fatigue set in &  I wasn't able to stand for long periods so my husband did most of the cooking.  

You will find that recovery takes time.  I still pace myself even today, do a task and then sit, do another task.  

I hope your mom's treatment goes well and you can both keep a positive attitude.  If I can help further, please reach out. 

Joan

Re: Mom diagnosed with Stage-3 advanced endometrium cancer

Posted by Jlo on Jul 8, 2020 8:49 pm

Hi Sabrizul:

Hi, I am a Stage 4 serous uterine cancer survivor and am 2.5 years in remission.  There is hope.  I was diagnosed in 2017 at age 67.  Like your mom my oncologist would not commit on survival rates, yet my surgeon was more positive.  Your mom is so lucky to have you there to help as she has been through a lot.   

If you can help keep track of your mom's appointments and help her get there or arrange transport that is so helpful..  Keeping track of her meds is important.  I kept track of my daily symptoms and summarized them for each appointment prior to chemo.  I had 6 rounds, but no radiation.

The nurses wanted to ensure I was eating enough protein and suggested lots of fruits, veggies and water is important.  I got a referral to a dietitian through my oncologist and had some counseling as I know how your mom is feeling.  

After round 3, the fatigue set in &  I wasn't able to stand for long periods so my husband did most of the cooking.  

You will find that recovery takes time.  I still pace myself even today, do a task and then sit, do another task.  

I hope your mom's treatment goes well and you can both keep a positive attitude.  If I can help further, please reach out. 

Joan