Dealing with stage 4b Serous Uterine Cancer

Hello All,  I'll be returning to treatment beginning June 5th with a regimen of Taxol/Avastin.  I have looked into some of the issues mentioned in this blog.  BTW I don't have any "mesh"

inside of me causing pain.  Curiously, in the past week most of my abdominal pain has gone away.  Since the return of my cancer, it seems that the discomfort will move to different location,

sometimes painful, sometimes not so much.  Seems strange, doesn't it?  I see how desperate and "down" my last post was.  I was so uncomfortable.  With regards to immunotherapy-

I found this passage on my original pathology report from 5/17 Hysterectomy:  Mismatch Repair Testing by Immunohistochemistry- MLH1 Result: Intact nuclear expression; PMS2 Result:  Intact nuclear expression; MSH2 result:  Intact nuclear expression;  MSH6 result:  Intact nuclear expression.  * No loss of nuclear expression of MMR proteins; Low probability of Lynch Syndrome; Further testing not indicated.  

I have consultation appointment with Doctor at Johns Hopkins soon.  I would like to have all of this explained to me so that I might know if I am a candidate for immunotherapy.  In the meantime, does anyone have experience or know about efficacy of Avastin in combination with Taxol used to fight USC?  I hardly know what to expect from this next treatment.  Thanks to all for your responses.

Rose

alisong said:

Hello to you allserous

I have just been diagnosed with 4B uterine serous , had a radical hysterectomy, and just started the first round of chemo. Thankyou for sharing. It makes me feel I am not completely alone. I have felt very isolated and depressed as i adjust to my new reality of a short life expectancy.

 

Alison

Alison, you are not alone.  Please ask any questions or vent anytime.  The wonderful women are here for you.

Hello, my mom was recently diagnosed with UPSC. She had a total hysterectomy and a bilateral salpingo-oophorectomy with lymph node dissection as well as omentum removed. She is 74 years old and is recovering well from surgery. We haven't gotten the pathology results post surgery yet but her surgeon did tell us that she should start chemo as soon as she recovers from surgery due to the unpredictability of this kind of cancer. The treatment plan is 6 doses of carboplatin/taxol every 3 weeks. I have read up on all the horrible side effects of these chemo drugs and I don't know if she will be able to tolerate them. I am wondering if it will be worth it to put her through all that just to have a recurrence down the road, would she be better off just living the rest of her life as best she can? She is in no pain right now and feels well, she has a good appetite and takes walks everyday. I have also read numerous stories of people healing their cancers naturally either themselves or at mexican clinics, anyone know of someone who has done this? I am so scared and so confused about how to help her make the best decision for her, I would greatly appreciate any advice. Thank you!

alisong said:

Hello to you allserous

I have just been diagnosed with 4B uterine serous , had a radical hysterectomy, and just started the first round of chemo. Thankyou for sharing. It makes me feel I am not completely alone. I have felt very isolated and depressed as i adjust to my new reality of a short life expectancy.

 

Alison

There are many stories about those diagnosed with UPSC who have lived far longer than doctors originally predicted. I've met quite a few of them here and on another board. 

Life expectancy? The fact is, we don't know. The doctors don't. No one does. Well, maybe if you believe in a Higher Power, THAT power may know (and I do believe), but no one on this planet does. We can look at statistics, but those statistics do not tell the entire story. They include women who refuse treatment, much-older women (this is a cancer that usually affects women 75 and older), race (unfortunately, it affects some ethnic backgrounds worse than others, and I've read conflicting reports whether that is due to socio-economic or genetic factors), those with serious co-morbidities, etc. etc. They often include data from cases more than five years old (the data on this site does). Treatments have changed since then ... quite dramatically if you use ten years as a marker!

UPSC throws an obstacle, to be sure, but there are those who overcame that obstacle. And unlike those with lower stages, we will ALWAYS have to keep an eye on it, even after we pass the magical five-year mark. That is, unfortuantely, the curse of advanced-stage in general and UPSC in particular. We can't pass up or excessively delay post-surgery check-ups, procedures such as colonoscopies, etc. If we feel something is off, we need to report it to the care team ASAP.

But difficult is NOT impossible. 

melias53 said:

Scared

Hello, my mom was recently diagnosed with UPSC. She had a total hysterectomy and a bilateral salpingo-oophorectomy with lymph node dissection as well as omentum removed. She is 74 years old and is recovering well from surgery. We haven't gotten the pathology results post surgery yet but her surgeon did tell us that she should start chemo as soon as she recovers from surgery due to the unpredictability of this kind of cancer. The treatment plan is 6 doses of carboplatin/taxol every 3 weeks. I have read up on all the horrible side effects of these chemo drugs and I don't know if she will be able to tolerate them. I am wondering if it will be worth it to put her through all that just to have a recurrence down the road, would she be better off just living the rest of her life as best she can? She is in no pain right now and feels well, she has a good appetite and takes walks everyday. I have also read numerous stories of people healing their cancers naturally either themselves or at mexican clinics, anyone know of someone who has done this? I am so scared and so confused about how to help her make the best decision for her, I would greatly appreciate any advice. Thank you!

Getting and dealing with a cancer diagnosis is always a shock to everyone, but the advice you'll see repeatedly here is to keep in mind that this is going to be a marathon and not a sprint to get through. Focus on one thing at a time. Your mom has had the diagnosis and surgery part of the journey. Next she needs the pathology report to know where she stands and what the treatment options are. It sounds like from the preliminary reports they get in the OR that chemo, at least, is a certainty. A scary option in most people's minds, but it's doable, especially with all the options that are out there now for coping with the side effects. Each of us are individuals that bring different strengths and weaknesses with us to the table, so our experiences with chemo are not always the same but let me re-emphasize that it is doable.

There's also a big learning curve because there are so many variables and options involved. There is time for all of this, so don't think that you need to learn it all or make all of these major decisions quickly. The thing is, though, both you and your mother should not be passive while going through this. You'll find that doctors don't always agree with each other or know everything about everything, so you need to spend time learning what you can (reading the threads on this forum are a great place to start) so that you can know what questions to ask and understand the answers you are given and make informed decisions. If you're having trouble finding what you need, just ask and someone can usually help out.

Many of us are big fans of complementary medicine that uses both conventional treatments such chemo and radiation along with alternative treatments to both support our bodies and fight the cancer and to help us recover from it all. It needs to be done under medical guidance, though. Sometimes the treatments of one discipline can interfere with the effectiveness of the other and then there's no point in doing either. If you go this route, be sure you find a naturopath that is certified and specializes in oncology and keep the gyn-oncologist informed of everything that is going on or being taken outside of his/her perview. Do not go to just any naturopath.

Thirdly, while your mom has an aggressive form of this cancer, at 74, she's too young to be written off and sent straight into palliative or experimental care. The science for treating our cancer has changed a lot in the last 5 years or so, so there is plenty of reason to not panic at the outset. Even if it turns out that your mom has an advanced stage disease, it can sometimes be managed as a chronic disease like diabetes and she can still live her life.

Finally, a blessing on you for being there for you mother. Chemo is nothing if not exhausing, so your being there for her through it will make a huge difference on how she gets through it. Hang in there and remember that we are here for you whenever you need us.

alisong said:

Hello to you allserous

I have just been diagnosed with 4B uterine serous , had a radical hysterectomy, and just started the first round of chemo. Thankyou for sharing. It makes me feel I am not completely alone. I have felt very isolated and depressed as i adjust to my new reality of a short life expectancy.

 

Alison

Wishing you all the best in your journey, Alison. So many brave women before us have been cured or manage to live with cancer and it is completely possible for us to be joining their ranks. 

My mom was diagnosed a month ago with stage 4b uterine serous cancer. The tumor is 8cm in the uterus. Metasticized to omentum but not ovaries. Gyno oncologist recommended total hysterectomy up down abdominal incision. My mom is 71 so we consented. When she was cut open, DR wanted a radical surgery and take rectum also. My mom wanted quality of life so we chose not to take out anything and she was sewn back up. DR advised 3 rounds of carplatin/taxol right away, then have 2nd surgery. My mom is sick of being poked and prodded and she wants quality of life. She made a lifestyle change and is juicing and vegan with mushroom and many other supplements. She’s walking everyday whereas before her knees were too swollen. Of the 4 prescriptions she was on for high blood pressure, cholesterol, glucose, she’s only taking the metformin for prediabetes. After the surgery, she handled pain and nausea with gum and cbd oil, instead of narcotics or Zofran. She walks over a mile a day and her blood pressure is nearly 120/80 without any medication. I don’t know if what we decided is right, but she’s so much happier and active. Her skin has never looked better. Since we refused chemo, oncologist referred us to palliative hospice care. We‘ve also asked for immunotherapy and clinical trials but was told it was only for those on chemo or recurrence. Does anyone know of a happy medium where my mom can continue her natural treatment and see an open minded oncologist?

Dear Rose,

it's really understandable that your feeling down at this point of your journey after suffering the disappointment of such a short stretch NED after first round treatment, the pain recurrance has brought, and being at the beginning of a longer than normal stretch of more chemo. That's a long tunnel to be looking down and the light at the end is probably pretty hard to see right now.

Give yourself permission to indulge in feeling down when you need to. Give yourself permission to focus on yourself as you go through treatment and don't feel guilty about accepting help and understanding from those who care about you. Letting them do what they can for you is a kindness to them. Feeling like there is nothing you can do to help a friend or loved one is it's own kind of torture, so don't look at accepting it as some kind of failure. Most of us find it harder to be on the recieving end of helping, but if ever there was a time in our lives when we need it, this is it. There will be good days amoung the bad ones. It's why we call this journey a roller coaster because of all it's ups and downs with our emotions. Recognize those down days as just ones you need to regroup so you can continue on to reach the good days.

You have plenty to share with friends. Look at how you are sharing what you are going through with us. You never know how what you share here is going to help someone else, so keep doing it. I've been on this board for over two years now and have felt lifted many times by the generousity of others sharing what they are going through and the knowledge and wisdome they've acquired as a result. Your experiences are difficult right now, but never doubt that they have value to the person you are and will be when you reach the other side of the tunnel. 

I feel honored that you came here at such a hard time in your life to share yourself and your deepest feelings with us. Never forget how much we care. I'll be with you in sprit Friday at your appointment..

rdifatta said:

Thank you for your kind words

To all of you, especially MAbound, NoTimeForCancer, and ConnieSW, your kind words go a long way to support and strengthen me.  My second opinion appt at Johns Hopkins went well.

I went with my sister, who ironically has recently been treated for Stage III Endometrioid Cancer, came with me.  I was notified of a possible clinical trial if the Taxol/Avastin regimen

does not improve my condition.  I've now had 3 weekly infusions and (knock on wood) I'm tolerating them well.  Hopkins doctor wants update after 2 cycles (months) so hopefully my numbers will turn around by then.  I'm hoping that's the case.  The thought of clinical trial frightens me.  Rose

Rose,

I hope that the new chemo regimen will work for you and that you can continue to tolerate the treatments without too many side effects.

Hopefully you'll never need the option of a clinical trial in the future, but it's still conforting to know that this option may exist if needed.