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UPSC is second primary cancer

ash612
Posts: 4
Joined: Mar 2009

Hi everyone,
My mom was just diagnosed with UPSC this past December. She is a stage IV breast cancer patient that presented with post menapausal bleeding so her onc. ordered an internal ultra sound, and found a polyp and thickening of endometrial lining. He sent us to the obgyn/onc who due to the damage from all of the radiation she has had for the breast mets couldn't do a physical examination. He told us he was 99% sure from the film that she had endometrial cancer and needed all the works removed for staging. After surgery, he informed us that it was definitely cancer and assumed it was from the Tamoxifin she had taken for breast cancer. We had already exhausted all treatment for breast cancer because she didn't want to go through any trials. 6 recurrences over 13 years and lost my father 7 years ago, so she had given up with our last round last May. Pathology report comes back UPSC, histologic grade- high, vascular invasision- positive, and myometrial thickness was 1.4 cm with the cancer invading up to 1.39 cm. He said her lymph nodes were so melded together from radiation that he only got 1 from 1 side. It was neg., but I remember when she had a mastectamy, they took out 29 lymph nodes and only 3 of those were positive. He told us that this cancer is not related to the breast cancer as first thought. We were devastated! Couldn't have radiation because already had high dose to pelvis and abdoman from mets to bone. He said because of all she had already been through, he wanted 6 rounds of chemo, hoped she could make it through 4, but might only get 1. Well the first one nearly did her in. She has gone through chemo several times before, but she is just so weak and tired. When we went in to tell her Dr. he of course didn't want her to give up, but he respected her wishes. He then ordered a PET scan to see if anything else was going on, and that's when we found out the breast cancer is back in 2 new places! So we now have 2 active primary cancers going on at the same time. This was Jan. 8. She has been on Oxycontin slow release and Oxycodone for break through pain for over 3 years due to the mets up and down her spine. She is on a walker since last May's episode. She is only 65 and it breaks my heart to watch her go through this, but she has fought for 13 years. We have now called in Hospice who have added the Fentnyl pain patch to her other meds. I have researched UPSC for 2 months wanting answers to what I'm not really sure. My husband says I'm like a dog with a bone, and just won't give it up. I think all her pain is from the cancer in her bones, but anyone tell me any compications you are having with the uterine cancer. All the stats are so depressing. Also, I'm 37 and wondering what should I worry about. Everything I have read has been in post menapause cases, but 1 lady on here is only 2 years older than me. We have no history in my family of uterine cancers, but we had no history of breast cancer either!

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

I'm sorry to hear of all your mother has gone through. I'm glad she is connected with hospice because they can help her and your whole family - my husband is a hospice social worker.

I have UPSC (61 YO post menopause) and asked my dr. what caused mine. He told me this cancer is not related to any lifestyle things (smoking, hormones, # children, etc). He said it was "bad luck" like getting struck with lightening. I don't know if this helps you deal with it any better. It really stinks!!

One thing I can enthusiastically recommend is the book, Getting Well Again by O. Carl Simonton - a $8 paperback probably in any used book store for $.50. Simonton was a radialogist in a cancer center and did research with patients given no hope after conventional treatment. The guided imagery exercises were very effective with many of his patients and results included remission, longer life, better quality of life. I am an evangelist for this mind body work and am using it myself. My dr. and nurse keep telling me I have "an A+" in treatment response. So, at the very least it will not hurt your mother. It can only help and the results can be very powerful.

I wish you all the very best. You will be in my prayers.

Daisy

barb55's picture
barb55
Posts: 91
Joined: Jan 2009

Hi, I am so sorry to hear about your mom. I'm responding to let you know that my stage 3C UPSC was diagnosed after a bout with breast cancer too- I was fortunate that the breast cancer was early DCIS. I didn't need chemo or radiation, but one of the oncologists strongly suggested I take Tamoxifen because of a family history of breast cancer (even though I was not found to have the BRACA gene). I should also mention that my surgical oncologist did not recommend the Tamoxifen- but at the the time I was dealing with my husband's stage 4 cancer and I think I thought the Tamoxifen would be my silver bullet so I opted for it. The doctor did say there was a risk of endometrial cancer, that it was small and that it was easier to treat than breast cancer. I was overwhelmed, a bit naive and had never heard of UPSC. I am convinced the Tamoxifen resulted in the UPSC which this group knows is not the kind of cancer we want to hear about- there is no absolute data to prove it, but many of my doctors agree. I beat myself up over this occasionally, but try to focus on what this means for my family. Especially for my sister and daughter- I think this is mainly what I wanted to share with you. My sister is 48. After my diagnosis she and I went through extensive genetic testing. I'm on the east coast, she's on the west coast. She worked with folks at the Fred Hutchinson Cancer Center in Seattle which is a prestigious program. Nothing came up. She thought a pre menopausal hysterectomy would be in her best interest and give her piece of mind, but the doctors convinced her that it was not necessary and now she just gets regularly tested with her Gyn as does my 25 year old daughter- the difference is my history is now part of theirs- it's unfortunate and yet I am glad that they are red flagged because I want to believe that if anything is found it will be found early and I know that makes all the difference. I have to believe that something positive can come from my experience. You didn't mention if your mom had genetic testing. Another positive I can share with you is that it has been 1 year since my surgery/chemo/radiation and I am doing just fine. Best of luck to you and your mom.

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

I forgot another thing that I believe will help. In addition to the book I mentioned, I am using audio guided imagery lessons - I bought Andrew Weil and Martin Rossman's (both MDs) healing CD as well as Bernie Siegel's (also MD) Cd to boost immune system - and it's all about the immune system!! These are reasonably priced and can be found online.

I sound like a salesman. If anyone else has things that have helped them, I'd like to know about them too.

Daisy

ash612
Posts: 4
Joined: Mar 2009

I realized after I wrote that I sounded like Debbie Downer! You women are so strong and I know you will all do well. There is a website that several friends of mine have used with family members who are ill. Caringbridge.com is for anyone who would like to share their experiences with friends and lets others know how everything is going. It may be more suited for my situation being the primary caregiver and with mom now on Hospice. I am in the Mississippi Delta right out of Memphis where we go for all of our Dr. visits. The West Clinic who is in conjunction with MD Anderson is where we have been going for 13 years. I can let everyone know what's going on each day without picking up the phone and calling 20 people! They just log on and read under mom's name! By the way, she did not have genetic testing done. Her Dr. said since there is no history anywhere, there was no need. Is this right, or should I persue it further because of my daughter(7),and niece (10), and myself? Thanks for the book ideas Daisy. I appreciate any help to help us through this "journey" we are now on.

Ashley

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I would never second guess anyone's treatment decision, as it is such a personal choice to fight on or not. But your mother really needs more of the chemo to battle such an aggressive cancer as UPSC, regardless of the stage, if she wants to fight on. And if she doesn't want to, after all she has already been through, I can sure respect that. UPSC is almost never hereditary unless you also see high incidences of colon cancer and other uterine cancers in your close family members. Then the frozen tissue samples from your mother's surgery can be tested to make that determination. So your doctor is right about that. I will add you and your mom to my prayers.

There have been so some posts on this Board on research using hormone (suppression??) therapy for UPSC and I know you can read about women using hormone therapy on the OVARIAN CANCER Discussion Board here. Perhaps that would be an option for your mother to slow the progression of the UPSC if she can't handle the chemo. UPSC has more in common with ovarian cancer than it does with the more common type of uterine cancer, and is treated with the same treatment regimes & chemo drugs as ovarian cancer, so we all watch what workd for the Ovarian Cancer women closely as options for us if the carboplatin/taxol stops working for us or gets too toxic.

barb55's picture
barb55
Posts: 91
Joined: Jan 2009

Ashley, please don't feel you need to apologize for sounding "down." If I sounded like I was handling this easily then I need to apologize. This is very very hard as is caregiving. I think whatever strength I discovered during my illness (and also caregiving my husband) came from allowing myself to be vulnerable and allow friends and family to support me- sometimes with tangible things sometimes with just listening to my fears, sharing tears as well as sharing laughter. As far as genetic testing- I have no idea if this is appropriate for your family- it doesn't sound like it is. In my case, there is a strong history of family breast cancer and I think I made for an interesting research study because I am an Ashkenazi Jew and there are studies out there connecting breast and uterine cancer. "specifically" with Jews of European ancestry. My doctors did not recommend it for my daughter but my sister chose to do it for her own personal reasons.
Take care.

deanna14
Posts: 733
Joined: Oct 2008

First let me tell you how sorry I am that you are going through this. Your mother is a lucky lady to have you by her side. I can certainly respect her wishes and see how tired she must be. I hope she is comfortable and content with her treatment decisions. How strong she is to be battling this horrible disease... and for 13 years. God bless her and you.
I am the one who is just 2 years older than you and wow... what a surprise it was for me to find out I had cancer and at an advanced stage. I would think your mothers doctors would be the ones who would know if genetic testing would be beneficial for you. My maternal grandmother, uncle and brother all battled colon cancer (and won)! My mother had endometrial cancer at 51 and breast cancer 6 years ago, both of which were treated successfully with surgery only. My brother and uncle both had chemotherapy. I have had external radiation/internal radiation and am now going through chemo. I say all of that to say, I have a strong family history and my tumor was found to be positive for Lynch Syndrome or HNPCC which increase the odds of colon and uterine cancer in my family. So, genetic testing is very important for me and I will do it when I have enough $$ as insurance will not pay for the counseling. They will pay for testing, but not counseling (makes a lot of sense, huh?!). Anyway, I have no biological children, but I have 3 neices and 3 nephews who will benefit from the testing, making it well worth the money I will spend.
Again, God bless you and your mother. May he take you both in the palm of his hand and give you peace that passes all understanding!
Here to listen if you need to talk.

ash612
Posts: 4
Joined: Mar 2009

I stayed with my mother last night because my 2 first cousins on mom's side came to visit with her while she is still able. We of course talked about family history. One of my cousins has a mother in the last stages of alzheimers, and she is 69.(My mom's sister) My mom's mother also died of alzheimers at 71, but her mother died of what they thought was colon cancer at the age of 66. That is the only cancer on my mother's side as far back as we can remember. I wonder if there is a connection there, with my mom'm grandmother having had colon cancer. The dr. was just so shocked the path. turned out to show UPSC instead of regular endometrial cancer. As far as her continuing treatments, she has had chemo the first 3 times her breast cancer recurred, radiation the 2nd thru 6th recurrences, and all the estrogen blocker treatments. This carbo/taxol treatment, she almost didn't make it thru the actually infusion. They had to stop several times for reactions, racing heart, high bp, and then had a hives break out 12 days out with eyes swollen shut and lips swollen huge! She has even had Taxol before for one of breast cancer recurrences! He said when he did the hyst. and looked all around in there she had so much damage from all the radiation they couldn't re-radiate the pelvic. Also he said she had so much marrow damage that was why he didn't know how much she could tolerate, but when they found new breast cancer mets, she just broke down and said she was too tired to fight anymore. I can hardly get her in the car to Memphis, an hour drive, without her being in horrible pain. I think alot of it is that my dad passed away at 60 from heart attack and she has just lost the will to fight. Thanks for all the support. It helps to have another's perspective on this rare but aggressive disease. There's lots and lots out there about breast cancer, and I've been getting yearly exams and mammo's since I was 30 on those. Really appreciate the prayers. If anyone wants to pray for specifics, please pray Nancy(my mom) has peace and stays comfortable thru this last stage of her "journey".
I am a preschool teacher and I have a daughter(7) and son(10) and a wonderful husband who have all been my greatest supporters. My brother and his family are great but live over 4 hours away. They come as often as they can and call everyday so I do have wonderful support.
Will talk later
Ashley

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

Ashley,

I am sorry about your mother and I will pray for her and you and all your family. Prayer is powerful.

I have UPSC with a family history of colon ca (father) and pancreatic (sister) and some cousins that I don't know what they had. Don't know if there's a connection - my Dr. said no - it was "bad luck".

I'm sorry your mother has lost the will to fight. I pray for ease of her physical and mental and emotional pain.

Mary Ann (aka Daisy)

deanna14
Posts: 733
Joined: Oct 2008

I will pray for you Ashley and for your mom to have peace and comfort. I am so sorry that she has been through so much. I can understand her being tired and wanting peace and comfort at this point.
Be sure you are taking good care of yourself too.
Peace be with you,
Deanna

Ro10's picture
Ro10
Posts: 1392
Joined: Jan 2009

You and your Mother will be added to my prayer list. Your Mother has been through so much. I am sorry she had such a hard time with the first chemo treatment. Sorry to hear she is having so much pain. I hope that Hospice will provide her better pain control.
I asked my onocologist about genetic testing, as I have 2 daughter and 3 sisters. He said the one with the cancer is the one to be tested. My brother had colon cancer, as well as my mother. But both of then were diagnosed after the age of 50, so my GI doctor did not feel the genetic testing would show a familial tendency. Try to take it one day at a time. HUGS to you and your family.

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