Ovarian Cancer reoccurrence stage 3C

caroline90

Hi everyone,

I’m writing because I’m looking for any suggestions or input at all. 

My message is more like a story book 

So I’m not expecting everyone to give me a big response any feedback will be greatly appreciated.

My mom was diagnosed with Stage 3C High Grade Serous Ovarian Cancer. 

 She had a hysterectomy and then started chemo a little before a month later Dec.4th \ 18 Carboplatin and Paclitaxel treatment. 

6 completed.

After this was completed she was offered a trail with a placebo Rucaparib and Nivolumab 

but the travel distance was about 5 hrs away from where she lives and the thought of getting a placebo she did refuse at the time and expenses she would need for hotel stays etc.

She was not offered anything else other just to contact if she is having any discomfort or pain she notices. 

I feel her blood work should have been checked more after she was set free from her 6 treatments but I’m not going to Dwell on the past. 

Trying to focus on what has happened now.

She had a reoccurrence 3 spots noticed on CT scan I asked why she never had a PET scan and response given there is no need for one the CT scan is fine to focus on for now ? 

As we do not have a PET scan at our hospital available she would have to travel / be put on waiting list to get one ... but shouldn’t she be regardless? Makes me wonder?

CT scan result 7cm right side of abdomen lining abdomen peritoneum 

3 1/2 cm liver? I think 

Lymph node by liver 3cm  (Doctor said this one was worrisome)

Offered Caelyx treatment nothing else with it as of right now ? I asked if she was carboplatin sensitive and the DR. didn’t give a definite answer but said we will not use carboplatin with most people that have reoccurrences within 6 months from my research are. 

So basically I’m wondering what is everyone’s thoughts on what she is offered with her reoccurrence and is there anything I should be trying to get with caelyx as a mantience treatment or what she should be really pushing for. 

Also I forgot to add she is BRAC negative from her genetic test results

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Luci22

Hi Caroline, 
First, I'm sorry your mom is going through this and you too. I know the feeling supporting my mom too.  After initial treatment I have heard from many other women that they mostly got their blood checked every few months or so.  It is truly a wait and see deal.  I'm not sure if other scans should be done, but I think it depends on each individual.

With this reccurance, I think if you are unsure, could you seek a second opinion, while she begins treatment?  Not sure where you are but I know it can be hard having so many unanswered questions.  Try to ask the oncologist again, maybe phone and ask for more details?   
I hope it goes well for your mom and that her treatment works very well.  All the best.  

MarilynOCC

Hi @caroline90.  Welcome to the site.  I'm sorry that you feel so uncertain about the follow up and treatment your mom is receiving.  Here are some thoughts based on what you have said, keeping in mind that I am not a medical professional:
1) Regarding the tests, I don't believe that PET scans are a routine part of follow up so I am not surprised that she was not referred for one. 
2) Based on the Doctor's comment regarding not using carboplatin for people in recurrence within 6 months - this would seem to indicate platinum resistance.  If the recurrence is more than six months after the end of treatment the cancer is considered platinum sensitive and typically they would use platinum drugs again vs Caelyx or another drug. 
3) I am not aware of other drugs that they may use in conjunction with Caelyx.  These are questions you can ask the doctor and you can certainly ask for a second opinion as @Luci22 also suggests.

We have a free guide available called, Still By Your Side, which is specifically for women dealing with recurrence.  You may wish to order a copy for you and your mom:
https://ovariancanada.org/living-with-ovarian-cancer/support-resources

Your mom is lucky to have to you doing some leg work for her.  How are you doing with all this?  It is a pretty steep learning curve isn't it?

danidelbiondo

Caroline90, I'm sorry to hear your Mom is having such a rough go of it. My diagnosis was much like your Mom's. After surgery and 6 cycles of carbo and taxol my oncologist said there was no need for a CT scan and nothing else medically he could do for me. I too got a come back when you have symptoms. I changed oncologist and am now getting CT scans every 90 days and Avastin every 3 weeks. This is the standard of care. Changing oncologists was worrisome but it was the right thing for me. Perhaps your Mom's GP can suggest a different oncologist. Regarding expenses, if your Mom travels more than 80kls each way for treatment,many expenses are tax deductible. Mileage, parking, meals $17.00 max per meal per day. Hotel costs too. Hoping for as  good an outcome as possible. I know this is rough on the entire family. Hang in there, it's all we can do. 

Flowergirl

Thank you for  the insight  @danidelbiondo... It seems so difficult to figure out standard of care as each province and patient case presents as unique... there are so many variables and those impacted by this disease have a hard time with the "watch and wait or come back when you have symptoms" process.  Good to hear you were able to find an option that works for you.

Also, asking the medical team is a trial a good option for me now, why or why not?  Trial activity/access/acceptance changes constantly.
So yes, @caroline90, we must all advocate for what is best for the situation...I offer to suggest asking lots of questions, the process and what other options are available. Support groups of various types can be very valuable as information is shared on multiple issues. Talking with others, hearing their treatments / diagnosis / experiences also can help you bring those up with the medical team to see if it applies for your mom's situation. 
Wishing you the very best as you find the supports you need.