Seeking advice about starting my Ovarian Cancer journey

[Texas_Mom]

Hello Everyone, Let me say thanks in advance for any and all advice or comments. It is very kind of you to share your stories and opinions. I may not be able to respond right away. Sorry for such a long post. I just want to get all of my info and questions out there. I will update with new information as I get it.

My husband and I are looking for advice about what is most likely the beginning of my Ovarian Cancer journey. I have not had a biopsy yet but all signs indicate OC.

I am a 62 years old woman who most likely has ovarian cancer. I went to my primary care physician for what I thought were gastrointestinal issues. Occasional abdominal pain. A CT scan and MRI show masses in both ovaries with spread to some surrounding areas as shown in the report below.

I have seen one gynecologic oncologist with Texas Oncology so far in Dallas Texas near where I live. It turns out my ACA Cigna Connect individual health insurance is not very good because he referred me to a colleague who seems to be the only Texas Oncology who has "block time" to perform operations in a Methodist Health Care hospital (Charlton Cancer Center) which also seems to be practically the only hospital my insurance covers.

I am scheduled for a full body CT scan with contrast Monday, Nov. 27, 2023. I am scheduled to my first consultation with the new gynecologic oncologist Nov. 28, 2023. I am scheduled for hospital pre-admission testing Dec. 1, 2023.

I am scheduled for an operation Dec. 7, 2023. They said they will do laparoscopic inspection and based on that may open up the abdomen to do the debulking or may opt for chemotherapy first and later do the debulking. He also discussed possible intestinal surgery and colostomy reversal. I am a little confused about when the biopsy would be done and will ask about that on the next visit. I guess this is part of what is called "staging"?

One thing I wish I had done sooner but will do this coming Monday is schedule a visit to MD Anderson Cancer Center in Houston. It will be self pay there but my husband and I agree that we likely have enough money to pay for it. I am guessing about $100,000. Has anyone here done that?

What questions should I be asking the doctors at this time?

Would it be worth waiting for a MD Anderson doctor if they could not do it sooner than the Texas Oncology / Charlton Cancer Center Dec. 7, 2023 operation?

I hope it is not inappropriate to post my CT scan results here. Please see below.

EXAM: MRI Pelvis W / WO (72197)

HISTORY: Right ovarian mass on recent CT suspicious for neoplasm, presents for further assessment.

TECHNIQUE: Multiplanar, multisequence MR images of the pelvis were obtained before and after the intravenous administration of 15 mL Clariscan.

COMPARISON: CT abdomen and pelvis dated 10/26/2023.

FINDINGS:A complex right ovarian cystic mass measures 4.8 cm AP by 4.0 cm CC by 4.4 cm TRV and demonstrates lobulated enhancing mural nodularity, highly suspicious for a cystic ovarian neoplasm. The left ovary measures 3.0 x 2.9 x 2.7 cm and demonstrates multiple small cysts, the largest measuring 1.8 cm. There is a poorly defined area of enhancing soft tissue within the left adnexal region, which partially encases the left ovary, extends over the anterosuperior aspect of the uterus, and demonstrates partial effusion restriction, suspicious for peritoneal metastases (postcontrast series 1201 images 45-50). There is a similar-appearing confluent masslike soft tissue within the anterior aspect of the left lower quadrant, which measures 6.0 x 2.9 cm in axial diameter on series 201 image 11). This finding was present retrospect on prior CT abdomen and pelvis dated 10/26/2023 and is highly suspicious for lower omental/mesenteric metastases. The uterus measures 5.5 x 2.9 x 4.3 cm. Endometrial stripe measures 3 mm in thickness. No definite fibroids are identified. The cervix and vagina are unremarkable. Osseous structures are unremarkable. Normal muscle bulk about the pelvis.

IMPRESSION:

1. 4.8 x 4.0 x 4.4 cm complex right ovarian cystic mass, highly suspicious for a neoplasm.

2. Ill-defined area of enhancing soft tissue within the left adnexal region, which partially encases the left ovary and extends over the anterosuperior aspect of the uterus, highly suspicious for peritoneal metastases. There is similar-appearing masslike soft tissue within the anterior left lower quadrant, which was present and retrospect on prior CT and is highly suspicious for lower omental/mesenteric metastases. Dedicated CT of the abdomen and pelvis with intravenous contrast would be helpful for more complete assessment. Gynecologic-oncologic consultation recommended.

Report Ends

[Lyndy]

Hi Texas_Mom

Sorry to hear that you are in this position but they seem to be getting on with it and that’s got to be a good thing.

First line treatment is well established and it is likely you will have surgery followed by chemo or chemo then surgery if they are worried they can’t get everything out at once.

The aim for surgeons is to get as much out without spreading microscopic pieces in your body. Chemo comes along and deals with anything that is left.

The questions you ask can be big ones: what are you aiming to achieve with this treatment?

Or small ones: what should I bring with me for hospital?

And don’t forget you don’t have to know everything. I opted not to know my staging until later on in the process, I think I was worried enough without knowing I was stage 4.

Be gentle with yourself, how ever this turns out, it’s a huge shock.

Take it one day at a time, one hour at a time if you need to xx

[Texas_Mom in reply to Lyndy]

Thank you Lyndy for your sensible advice and kind words. I have recently read that the surgeon can encapsulate the ovaries in some sort of bag or glue that can help prevent spreading microscopic pieces so I will ask about that too.

[Skyeplus]

Hello Texas -Mom, I am in the UK so my journey is the same but different. As Lyndy say, it is a huge shock when you first start this journey however it sounds as if they are doing everything they should to start the process of identifying what is going on. Whatever the outcome there will be a plan going forward. I was 67 when diagnosed and have had debulking surgery followed by chemo and then a maintenance drug called Niraparib for a year. More chemo as the latter stopped working for me. There are lots of questions to ask. Have someone with you when you see the oncologist or surgeons as I found I couldn’t recall everything that was said. Am sending a big hug xxxx

[Texas_Mom in reply to Skyeplus]

Hello, this is John, the husband of Texas_Mom. She is feeling a little overwhelmed right now so I am stepping in to keep the conversations going.

Thank you Skyeplus for sharing your story and for your support. We appreciate it.

[Skyeplus in reply to Texas_Mom]

Hello John, you will find lots of info and support on here. Please remember to look after yourself so that you can care for your lovely wife. Stay off Google as all the info is out of date. Thinking of you both and fingers crossed for a positive way forward. Xxxx

[Texas_Mom in reply to Skyeplus]

Thanks Skyeplus for your kind words. So far I am holding up well. I take you point about old out of date Google data and will keep it in mind. We also wish you well.

[Katmal-UK]

Hi I’m in the UK. I was diagnosed stage 3b BRAC2 HGS OC in October 2007 at the age of 48 and given 2 years, as you can see despite 2 recurrences, still here and currently 10 years 3 months NED (no evidence of disease). I’ve been on 3 trial drugs which is something you may want to consider. Everyone’s journey is different. Stage off google, it won’t tell you what will happen to you and can be full of outdated statistics and a scary place. Be guided by your oncologist. Good luck x

[Texas_Mom in reply to Katmal-UK]

Hello, this is John, the husband of Texas_Mom. She is feeling a little overwhelmed right now so I am stepping in to keep the conversations going.

Thanks for sharing, your support and advice. We will inquire about trial drugs. I guess since you are in the UK what you got may or may not be available here in the U.S.

We are happy to hear you are doing well despite a poor initial prognosis. Regards, John

[Ruebacelle]

You are lucky to be in Texas. Md Anderson ranked 1 in the world. If I were you would get a consult with them when I inquired 3 years ago it was 2500It's good have the exam results to show them. Good luck

[Texas_Mom in reply to Ruebacelle]

Hello, this is John, the husband of Texas_Mom. She is feeling a little overwhelmed right now so I am stepping in to keep the conversations going.

Thanks for your reply. From what I am hearing from you and others I am convinced we need to go to MD Anderson. I am kicking myself now for not having contacted them sooner. I somehow let myself fall into the trap of thinking my only options were what my wife's insurance covers but we have enough savings to pay cash which I am happy to do if it gives her any little bit of an edge. Thanks again, John

[Schnauzer19]

Hi Texas_Mom

So sorry you have had to join this club, but you’ve definitely come to the right place for lots of support and sound advice. I’ve recently been diagnosed too, so not long started on this journey. I’m from the UK but from what I’ve read, if I were from Texas, I would definitely go to MD Anderson, they seem to be at the forefront of OC research; my surgeon was taught by them and apparently he’s excellent (I hope 🤞🙏). We are very lucky in the UK that we have our NHS. Absolutely don’t Google, I really regret doing so, a lot of outdated information, they have come along way with treating OC now. You will read many positive stories on this forum, made me feel much better when I joined. Do let us know how you get on. We all know how you are feeling, it will get easier though. Sending lots of love to you.

[Texas_Mom in reply to Schnauzer19]

Hello, this is John, the husband of Texas_Mom. She is feeling a little overwhelmed right now so I am stepping in to keep the conversations going.

Thanks Schnauzer19 for your concern and support. Yes we will certainly contact MD Anderson on Monday. The warning about Google searches is a good one too. Again thanks and we will stay in touch on this discussion board. Regards, John and Texas_Mom

[StilCrazy in reply to Texas_Mom]

Hi John and Texas Mom

I am reading your report and it seems OC and some metastases are highly likely BUT no one knows yet for sure. The important line in your mail is that the confimatory biopsy has not yet been done. Before you waste your savings on anything, get that biopsy done and the diagnosis confirmed. Your insurance MUST pay for that AND a chest CT to see if the tumors have spread to the pleural space around the lungs as they often do. Armed with that information you will get more value for money when you see a private oncologist. As terrifying as waiting is, you will regret being too hasty. When they biopsy and find the mass is OC, they test the mass for estrogen receptors, BRCA receptors and sometimes for HRD. Those results give them direction as to which therapy is most likely to work. The reason you need to push your insurers to move quickly is that sometimes the tumor affects the tissue around the gut and causes it to block. This is a true emergency and very unpleasant. Apart from that you have time to think and plan. If you blow the savings on hasty diagnostics you may have nothing for more advanced treatments that your insurance will never cover. Patience and a cool head are essential right now. Much love...

[Texas_Mom in reply to StilCrazy]

Hello StilCrazy. Thanks for your advice and support.

She did just get another CT scan with contrast yesterday both chest and abdomen this time. We are waiting for the report hopefully today. About the biopsy, the first GO at Texas Oncology we talked to said they will do laparoscopic inspection and based on that may open up the abdomen to do the debulking or may opt for chemotherapy first and later do the debulking. I think he said they would take a biopsy and do the lab work during her surgery. So if that is correct then there would be no chance for a second opinion on the lab work before a decision is taken on how to proceed. I will ask the GOs about that. We have a meeting with the new Texas Oncology GO (Dr. Brandon M. Roane) today and a meeting with a MD Anderson GO (Dr. Jeffery A. How) on Thursday. I will update the forum. Thanks again, John

[StilCrazy in reply to Texas_Mom]

Hi John You may well know this but just to be clear. The reason they sometimes debulk first, then chemo, is if there are a few big removable tumors and it helps to reduce the tumor load before chemo starts. Because the tumors are inside we forget that they have to "rot" away and be reabsorbed during chemo which makes the patient feel awful. Debulking helps you suffer less after chemo if you have a big mass or two that are easily removable. If there are hundreds of small tumors scattered all over like chocolate sprinkles embedded in icing on a cake, surgery is pointless. Then they only biopsy and start chemo after histopathology. It is a practical decision. It saves 2 anesthetics to debulk at the time and use some of that tissue for testing. There are several types of Ovarian cancer and they are all treated a little differently but debulking would be done to any of them if there are removable masses. I hope this helps you navigate this overwhelming time when info is pouring in too fast.

[Texas_Mom in reply to StilCrazy]

Hi StilCrazy. Thanks again for you advice and explanations. After our meeting with the Texas Oncology GO he thinks it will be OC stage 3C.

I will post the last CT scan below.

EXAM: CT Chest Abd Pelvis W (00022CC)

CLINICAL INDICATIONS: Follow-up ovarian mass

TECHNIQUE: Helical computed tomographic images of the chest, abdomen, and pelvis were performed with intravenous contrast. 100 cc of Omnipaque 350 was utilized for the exam. CT scan performed according to ALARA (As low as reasonably achievable) principles.

COMPARISON: Pelvic ultrasound 11/8/2023, CT abdomen and pelvis 10/26/2023

FINDINGS: Thyroid gland is normal. Heart size is normal. No pericardial or pleural effusions are identified. There is no consolidation. There are no pulmonary nodules or masses. The bones are unremarkable. The liver, gallbladder, pancreas, spleen, adrenals, and kidneys are unremarkable. There is no hydronephrosis. Bladder is unremarkable. There is no free fluid. Left ovarian follicles are identified, measuring up to 1.3 cm. There is no pelvic lymphadenopathy. There is a stable complex right ovarian cystic mass, measuring 4.8 x 4.0 x 4.4 cm. This demonstrates lobulated enhancing mural nodularity, and is suspicious for cystic ovarian neoplasm. There is a stable soft tissue density in the anterior left lower quadrant, suspicious for omental implant. This was better seen on the prior MRI. PET/CT could be considered to evaluate for metabolic activity. No additional implants are identified.

IMPRESSION: There is a stable complex right ovarian cystic mass, measuring 4.8 x 4.0 x 4.4 cm. This demonstrates lobulated enhancing mural nodularity, and is suspicious for cystic ovarian neoplasm. There is a stable soft tissue density in the anterior left lower quadrant, suspicious for omental implant. This measures approximately 4.3 x 2.0 cm, and is seen on image 54 series 6. This was better seen on the prior MRI. PET/CT could be considered to evaluate for metabolic activity. No additional implants are identified.

[Jholly4]

Hi Texas mom, sending you a virtual hug from the UK ad it is very daunting starting this journey. My diagnosis was earlier thisnyear so all still very fresh for me, as others will say you will have your ups and downs but reassuring to hear your team are getting on with things, December may seem a long way off as you want it all done but it is going ro come around very quickly. ( I was diagnosed in March and op was in May and like you several trips to hospital for tests and pre op checks). One thing I will say is when I was scared and thought it felt all doom and gloom ,reading the updates from the amazing warriors on this forum really picked me back up again especially hearing there are so many ladies over a decade feom diagnosis still living great lives. Ovacome helpline team are great if you have specific queries about understanding things. Good luck x

[Texas_Mom in reply to Jholly4]

Hello, this is John, the husband of Texas_Mom. She is feeling a little overwhelmed right now so I am stepping in to keep the conversations going.

Thank you Jholly4 for the support. We also find much comfort from reading these posts and replies. We wish you well on your journey and hope to hear more from you and others. We will keep the forum updated on Texas_Mom's progress. Take care, John and Texas_Mom

[delia2]

Hi. I’m in the US and did get a second opinion at MD Anderson. As was said above the first line treatment for OC is pretty standard: debulking surgery by a gyn oncologist and six or a few more cycles of carboplatin and paclitaxel. Possibly with Avastin added toward the end and continued for maintenance. Then you would have a PARP inhibitor for maintenance. A big question now is whether they will do neoadjuvant chemo ( several rounds before surgery) or do debulking first. That will depend on what they find. For example if the cancer were in a difficult place to access they might try to shrink it with chemo first. So far your care sounds very appropriate. I guess the important thing is the experience and skill of the surgeon. Regarding MD Anderson, it’s great to have them as an option but don’t bankrupt yourself to pay for the same standard chemo there that you’d get at your local hospital. Use them for second opinions and trials unless you can get your insurance to pay. I had my initial treatment at a small hospital where my daughter is a doctor (quality control). I got several second opinions at top places reassuring me about my frontline treatment. I then moved to Dana Farber afterwards. For most of us this is not a quick fix but a long haul. I wish you the best.

[Texas_Mom in reply to delia2]

Hello, this is John, the husband of Texas_Mom. She is feeling a little overwhelmed right now so I am stepping in to keep the conversations going.

Thanks delia2 for the detailed reply. From what I am hearing I am convinced we need to go to MD Anderson. I am kicking myself now for not having contacted them sooner. I somehow let myself fall into the trap of thinking my only options were what my wife's insurance covers but we have enough savings to pay cash which I am happy to do if it gives her any little bit of an edge. Thankfully it will not bankrupt us. We might not travel the world as much as we had planned to do in our senior years but that is a small price to pay I think.

We are happy to hear you have a daughter is a doctor and could help you. It looks like Dana Farber is a great cancer center also. We are wishing you well on your journey.

Thanks again, John and Texas_Mom

[Jpembs]

Hi there

In answer to your question about my experience of chemo.

I'm just about to restart chemo after surgery having had 6 cycles prior to surgery. This time may be different but I found the first 6 relatively easy to tolerate (5 were with Avastin as well). I feel a lot of why I was ok was down to exercise - primarily daily yoga and walking (there's a good video on YouTube about the benefits of exercise alongside treatment from an pretty old study in Australia), fasting for 3 days around chemo and daily meditation/visualization. This regimen won't be for everyone and maybe I would have been ok without but all I can say is chemo didn't really effect me in any significant way and was extremely effective (Stage 4b HGSOC with mets to several organs I from inoperable at first diagnosis to now having no visible signs of cancer). I intend to follow the same regime for my last two cycles in the hope of the same outcome.

Good luck

Julie

[Texas_Mom in reply to Jpembs]

Hello, this is John, the husband of Texas_Mom. She is feeling a little overwhelmed right now so I am stepping in to keep the conversations going.

Thank you Jpembs for sharing your experience and advice. We appreciate it and will plan to incorporate your ideas into her treatment plan. Also we are very happy to hear your journey is going well. Regards, John and Texas_Mom

[Lookingahead]

Hi , it is a scary time when you are first diagnosed with Ovarian Cancer and have to weigh up the treatments. I can only tell you of my experience here in the UK . My OC was very advanced by the time it was diagnosed . My gynaecological oncologist decided on an ultra radical debulking operation . However , I needed 4 rounds of chemotherapy to reduce the cancer before the operation . It was not too difficult as you are given many drugs to counteract the immediate side effects so personally , I coped well. My advice would be to get up and walk around the first day home after chemo. You will feel like just lying in bed and staring at the ceiling !!! —-but if you walk around, it stimulates your heart and improves your circulation and you actually feel much better . I would aim for about 600 steps around the house before collapsing back in bed on the first day !! Then personally , I would get dressed for lunchtime then lie on the sofa downstairs. Each day I would walk further around the house and garden so after about 5 days , I felt almost normal again ! Depending on your chemotherapy regime , you probably then have another 2 -3 weeks to recover before the next round of chemo. After the op, I needed another 6 rounds of chemo. Depending on the type of chemo, you may lose your hair. This can be hard but I had an excellent wig provided and no-one could tell the difference !!

I don’t know how your health care system works in America but if you can afford payment , then look for the most prestigious hospital for Ovarian Cancer and choose your surgeon for the operation based on their experience and success. I was fortunate to have an excellent surgeon and chemotherapy consultant .

And just to conclude , that was back early 2020 . I have had continuous treatments since and I’m currently on a clinical trial of a new drug . We have had many holidays in our motorhome and spent many happy times with family. So — you will feel totally overwhelmed at the moment but there is a good future there for you to enjoy . Cancer is a scary word but it can be treated ongoing like many other illnesses and you can still have a good life ahead of you .

If you have any questions , don’t hesitate to ask . Like everyone on this site , I wish you well and will be thinking of you.

❤️❤️🙏

[Texas_Mom in reply to Lookingahead]

Hi Lookingahead. Thanks for sharing your experience and your kind words of support.

This is John, the husband of Texas_Mom. She is feeling a little overwhelmed right now so I am stepping in to keep the conversations going.

The dilemma we are currently facing is weather or not to wait for an MD Anderson surgeon date unknown or go ahead with a scheduled surgery Dec. 7, 2023. We don't know how fast the OC is spreading. Perhaps a comparison of the new abdominal and chest CT scan she is getting today compared to the abdominal CT scan she got on Nov. 8, 2023 almost 3 weeks ago will tell us something. We will update later. Thanks again.

[meadowgirl]

Hi

When I was diagnosed I was told that I needed biopsies initially to better understand the distribution and type of cancer. I went privately for this, at the Royal Marsden hospital in London. They also looked at the genetic makeup of the tumour (this can make a difference to which drugs are best for you,) so I would ask about this. When I had biopsies done, the surgeon also removed both ovaries. This was all done in a single morning. I had a phone call with the results then had to decide if I continued my main surgery with them . This might be an option for your wife. It’s all very scary initially but once you know what needs to be done you will feel more in control. All the best to both of you.

[Texas_Mom in reply to meadowgirl]

Thanks meadowgirl for sharing your story. We will ack for a test of the genetic makeup of the tumor. Thanks is good advice. We wish you well and we will update the forum to stay in touch.