Looking for Hope

dolphinlova

 

So, I guess it started in March 2016. At age 50, my Mom started having awful periods, very painful and heavier than ever before. I work in OBGYN, so I thought this was just perimenopausal symptoms, as did my provider. So an ultrasound was done, everything is normal besides her uterus is slightly long and her left ovary has multiple follicles. She is considering an ablation but the doctor does not think she is a good candidate because of the size of her uterus. So she decides to hold out to see if the awful periods just stop their own. They Don’t. Come October 2016, periods are worse than before, she wants something done. They decide to go with an IUD, so that is inserted the same day. Everything is awesome for a year. Periods are nonexistent, cramping has stopped, she loves the IUD. Come 06/2017, she starts having pain and swelling in her right ankle. PCP thinks it’s Gout. Gives her medicine for that which does nothing. She calls her back and says she is no better. I asked for her to get an doppler of her leg to check for DVT. Her PCP is not convinced. PCP says let’s order an X-ray to check for injury (there was no injury) I talk to Dr. S who is worried and says its no issue to order one, so she did. Low and Behold she has a DVT. Mom gets put on Xaralto for 3 months, the clot resolves fairly quickly. Then she is taken off. Forward to October 19th, 2017, Im leaving for work and she's complaining of lower abdominal pain. First thing I think of is something is wrong with the IUD, So I asked her to come in ASAP for an ultrasound to make sure it’s still in the right place. So we get her in, ultrasound first then seeing the doctor. Ultrasound shows normal left ovary BUT cannot see right ovary because of large complex mass measuring at least 15cm, with blood flow. She has a cruise scheduled the very next day to Mexico. So Doctor S. says go ahead and go, we will take care of everything when you get back. At first Doctor S. thinks its just a large complex cyst (Benign), but since it is so large it needs to come out. Doctor S. said since her periods are bad already, let’s do a hysterectomy with right oophorectomy. But with the cyst being so large, she will have to make a vertical incision. So mom gets back from her trip, following day Doctor S. wants some blood work in anticipation for surgery. Also, mom was complaining of pain in her left leg now after the long car ride from mexico. So another doppler was ordered. She ended up having 2 DVT’s in that leg. She was kept in the hospital to have an IVC filter, which prevents DVT’s traveling to the lungs. (She ended up already having multiple Pulmonary Embolisms at the time that wasn't known.) She Orders a CBC, CMP, and CA 125. Everything came back fine EXCEPT CA 125 was 2939, which is supposed to be 35 and below. So RED FLAG RED FLAG RED FLAG. Dr. S still doesn’t seem too worried, she thinks it is a Low malignant potential tumor. So she consults with one of her best oncology colleagues, which is Dr. Murray. Dr. Murray seems actually very worried, with the size of the mass, her very high CA 125, and with recurrent DVT’s. Now Dr. Murray is doing the surgery instead of Dr. S. We meet with Dr. Murray, she tells us straight up she thinks this is Ovarian Cancer. So now we have to wait a little over one month for surgery because Dr. Murray is worried about the blood clots. Come December 1st, surgery lasts for about 4-5 hours. She did a Hysterectomy w/BSO, appendectomy and omenectomy. Took multiple biopsies from everywhere, and ended up taking 15 lymph nodes. We are told it is cancer, but that it looks to be stage 1C. The tumor was not really adhered to anything at all, there was fluid from part of the tumor rupturing. About 1 week later we have her first post op, where she tells us she is now stage 3C. There is cancer in 2 lower lymph nodes and well as 1 along the aorta. Literally EVERYTHING else is negative for cancer. Uterus, left ovary, appendix, pelvic washings, all biopsies. I’ve never seen a story like this, I’ve always seen stage 3C where there are tumors everywhere in the abdomen. So to hear this is shocking. We were expecting good (considering) news and now it’s just awful. Oh, also when the CT scan was done to look for PE's, they found a nodule. She is a former smoker so I know it could be scar tissue or something. Dr. Murray doesn't seem to be that worried about that being cancer because there is not free fluid around it but she will be watching it. If it is then that means the cancer is stage 4. She will start chemo tomorrow, January 11th. Chemo will be 6 cycles of Carboplatin and Taxotere. I know she is in good hands with her Gynecologic Oncology doctor but I am absolutely terrified. I just want to hear stories, any helpful advice. Sorry this is so long, please let me know if you have any questions.

Tethys41

Stories and Advice

Hi dolphin,

I am sorry you and your mom are going through this.  It is never easy.  Her story, unforutnately, is not unusual.  Often ovarian cancer is misdiagnosed for weeks, months or years.  But you probably know that. 

 

In 2009, I was diagnosed at age 50 and my diagnosis was delayed by 3 months because my nurse practitioner did not think my symptoms were caused by anything serious.  I too had pain and periods which got closer and closer together.  I had an initial ultrasound, which showed a 5 cm mass on my ovary and a thickened endometrium.  I had a D&C and all the tissue was normal.  A follow up ultrasound showed the mass to be only 2 cm.  But the pain persisted and 7 weeks later another ultrasound showed tumors throughout my abdomen. 

My surgery was suboptimal, with tumors remaining on my liver, on some of my bowels and in a lymph node in the mesentary tissue they could not remove.  My surgeon told my brother I would not live more than a year and I would never acheive remission.  He didn't tell me this because I told him at the very start I did not want to have conversations about survival.  I did chemo with carboplatin and taxol, as well as avastin.  I had a lot of issues during treatment, including over 20 paracentisis to drain fluids and ended up on 24/7 IV nutrition for three months. 

I think what made the difference for me was that I pursued integrative treatments, along with my conventional ones.  I found a very knowledgable integrative nurse practitioner and a naturopath with extensive oncology experience.  We worked hard through treatment and beyond supporting my body and working on improving my health.  I received high dose IV vitamin C, took certain supplements, did genetic testing to find out where my body was malfunctioning, did mistletoe injections.  I also went to Oasis of Hope hospital in Mexico for two weeks of intensive integrative treatments.  

When I finished chemo, my CA-125 was <1, after being 4,600 at the time of my diagnosis.  I have worked hard over the years to continually improve my health with diet, exercise, testing, supplements, stress management, dental work and heavy metals chelation.  I feel much healthier now than I did for years prior to my diagnosis and I avoided the lasting side effects of treatment.

Again, I know how scary this is.  If I gave you one piece of advice, it would be to find an integrative practitioner who can help your mom protect her body during chemo and work hard to make it healthy once she is done.  First line chemo has a very high success rate for ovarian cancer, but the disease is notorious for coming back.  I think that being proactive increases one's odds immensely. 

Good luck.  Hang in there.