Anyone here have Low Grade serous and is Braca positive? If you do have Low grade ..have you been tested for the Braca defect? If not why? I have heard that it is very unusual / not possible to have Low Grade cancer as well as being Braca positive. I am Braca positive and have Low grade...so thats how I now know its not impossible ?
I am so very confused by all this. I have been on Olaparib since feb.19 for recurrence and am very concerned reading that there is no treatment for Low grade...apart for operative? XXXXXXXXX
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Lizjj
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Hello from my understanding it is unusual to be BRAC positive, but it seems a small percentage are. I am low grade and have had tests fr BRAC1 & 2 just last week and I am waiting for results. This was also done on the NHS. My oncologist was reluctant to test, and I didn't push too hard but as a history of breast cancer in my family he decided to do it. Did you have surgery first and chemo after by the way Lesley Xx
Hi Lesley...I only started to investigate what Low grade meant etc., after recurrence. In 2012, when first diagnosed the doctors wanted to operate first, and attempted to do so as well, with a lot of talk regarding a very intensive operation that amongst other things would most certainly result in a colostomy etc., "lucky" ,,,the doctors discovered that one of the main veins leading to intestine was also full of cancer and after being opened up , they sewed me up again and decided to start with chemo, 3 series, which resulted in almost all the cancer vanishing so they could then do a hysterectomy and omentum removal...nothing else. (no bag)...after operation there was no cancer microscopic … Ive had no treatment at all after that. After recurrence June 2018 the cancer had appeared on diaphragm . Chemo was able to get rid of half the tumor and radiation did the rest, as the area was unoperable. This time my ONC decided to test me for Braca mutation and I could then go onto oplaparib and have been on it since feb. 2019. PS...I am so happy you have been tested for BRACA. What treatments have you had so far?
Hi again Lesley...Ive just read your description regarding treatment on your "page" , after I posted the below...so i can see they have treated you with hormone medicin . This is one of the things that bother me...why was i never offered hormone therapy, like most of the Low graders? I thought that was because of the hysterectomy...and thus no hormones to stop?
I have been on Tamoxifen for maintenance. My histology report came back as 50% of the tumor cells have positive progesterone receptors while the oestrogen receptor staining is patchy positive. From my understanding is that we still produce oestrogen in out bodies even if had a hysterectomy, and Tamoxifen blocks the oestrogen. All so confusing and hard to get head round isn't it. There might be ladies on here who know more though. I have only been on Tamoxifen for 2 weeks and seeing oncolgist in a few weeks time. I suppose treatment might change if BRAC1 ? although that might be doubtful. So sorry to hear that you have had a hard time, but the positive thing is that because you are BRAC1 positive you are eligible for Oplaparib. I had 6 cycles of Carbo/Taxol after debulking. I would speak to your oncologist and ask him to explain to you your histology report and decisions on your treatment. The ladies on here are so supportive and lovely and might have more to add than I can. Let me know how you get on. Best Wishes Lesley X
Hi Lesley..thank your so much for the reply. Its a great help. I am Braca 2 positive. All this info is giving me a lot of questions I can ask my oncologist. All the information I am gathering is making me really feel much better and less suspicious regarding my treatment and doctors decisions. XXXXX I will keep you informed and will be following you as
Hi Lizjj, Yes I think whilst it's rare to have low grade and also have a BRACA fault it's not impossible. I am low grade and am not BRACA. The geneticist I saw was not going to do a BRACA test on me as not a lot of familial evidence. However, when I mentioned that there might be an Ashkenazi Jewish link in the family she agreed to do the test. She told me this section of p. . I think because of your BRACA fault Olaparib has been prescribed - I think for low graders Olaparib (Parp inhibitor) is only available in a trial setting. As for treatments for low grader - I have had 2 surgeries and am due to have another in the very near future. Also you need to find out if your cells are oestrogen sensitive - many low graders, including myself, are on hormone inhibitors orally. I am currently on Tamoxifen but there are a number of this type, eg. Letrozole, Exemastane. As far as chemo is concerned, whilst results generally not as good as for high grade ladies, low graders can get some benefit. When I had chemo there was stability and a little shrinkage. My onc.may look at chemo again in the future. There might also be the possibility of a trial if there is one suitable when required. Hope this helps. If I am wrong in what I am saying perhaps I may be corrected by other ladies here. Gwen Xx
Hi Gwen. Yes this really does help me as I have been worrying about why I have not been given hormon therapy when first diagnosed, instead of just letting me sail on in bliss oblivion until the cancer returned five years later? I am making a list for my ONC and the main question is going to be regarding oestrogen sensitivity. What if , despite the parp I still need to inhibit the hormones? All these thoughts are driving me crazy, and I just dont want to relax and be too trusting once more. Thank you for replyingXXXXXX
Hi Thomas62 everything’s g you said in your post my oncologist had told me exactly the same. You can access different drugs if brca , otherwise the suggested route is surgery and hormone inhibitors. Some do chemo , some don’t. Works for some. More seen as an insurance to mop up any left over cells. From my understanding.
Hi Babbey, It's brill high grade now has PARPS to aid them in their battle but it seems to me that we have few efficient therapies to draw on. Best wishes. Gwen Xx
Hi LIz. If you check out one of Petrolhead 's recent posts, there was a link to a recent OC conference & materials , including a presentation on the latest state of the union for rare OC incl. low grade treatment, from the viewpoint of one of the experts in this area, Prof David Gershenson in Texas, USA. Link: ocrahope.org/wp-content/upl...
Whether you find it relevant or not is up to you, but let me just paraphrase the treatment options listed in that presentation, for low grade serous OC:
1. Standard/classic treatment:
Surgery (which I perceive to be considered a solid option, where possible) and - where indicated - Taxane/Platinum based chemo therapy.
2. New targeted therapy strategies:
Targeted Agents:
- Anti-angiogenic therapy
- MEK inhibitors
- BRAF inhibitors
- Combination targeted agents
Endocrine Signaling:
- Aromatase inhibitors
- CDK 4/6 inhibitors
Granted, only a few of those strike me as mainstream / widely available (aromatase inhib./Letrozole, anti-angiogenic/Avastin), from my own experience. HMT Hormone maintenance (basically blockers) treatment seems to make its way into the various guidelines now, albeit slowly, as a mainstream treatment option for low grade. That said... there are already a number of women who write about receiving MEK inhibitor treatment on the US Inspire forums (e.g. as part of a trial), possibly even checkpoint inhibitor treatment (not 100% sure about that though, from memory).
In addition to new meds, I've also read about a number of trials coming up or ongoing, where combinations of treatments are being looked at.
Personally, I don't seem to be BRCA positive (at least not according to a very limited consumer DNA test, since neither the German nor the UK system had been willing to pay for a detailed analysis at that point; guess I'll keep the genetic test option available for the next recurrence ). My first line treatment was surgery . My second line treatment expanded on that theme and included surgery, chemo, Avastin and Letrozole (with only Letrozole still ongoing).
Which one helps? No clue . It's the big game if chance we play, until onkotype-testing (or whatever it's called now; the testing of tumour tissue samples' response to various meds, in order to evaluate and estimate potential treatment success) becomes more relevant for OC, standardized and widely available.
The Good: As BRCA patient, you get to try something others might not have access to: PARP inhibitors.
Hopefully you're not losing heart. Yes, low grade seems a tad tricky to treat.. but there is research being done, and maybe Olaparib is a winner for you already. If you have doubts , did you check with your oncologist whether Letrozole or something else might be a better option for you?
Hi Maus..thank you for this information. I am really feeling now that taking part in investigating what`s happening as far as my treatment is concerned is helping me mentally. I really appreciate this and I have made a list of questions for my doctors. I am very curious as to why I was not put onto some kind of hormon blocker at first diagnosis. And yes I am going to ask about Letrozole etc., at next meeting.
Since starting Olarparib feb.2019 after radiation ...I have been CT scanned every three months and CA 125 once a month is 10 and has never been lower. I really do hope that Olaparib is a winner for me as ONC says stable and looks like scar tissue after radiation. (but now I know that low grade is slow growing) so who knows?
I hope you do get a Braca test done. Prior to Braca testing I had a feeling that I was to be written off with no further treatment as none of the treatments you mention above were ever mentioned to me and I recall one of the ONC saying there was one more chance for further treatment if I tested positive for BRACA. ..All very confusing..
Hi Lizjj, I am low grade 3C Primary Peritoneal Cancer (ovaries and all had been removed 30 years prior). I am not BRCA 1 or 2. I receive my care in my home town (USA) but saw Dr. Gershenson just after finishing frontline carbo/taxotere in 9/17. At that time, I received a full genetic study and new pathology to definitely confirm low grade. Dr. G put me on Letrozole — estrogen blocker. At that time, genetic study of the tumor revealed I was P53 mutated, a mutation highly irregular in low grade. He stated that my tumors might be mixed high grade and low grade but we’d never know.
A year ago my CA-125 started to rise steadily at each appointment locally. It crossed the threshold to abnormal in February. I went to see Dr. G in Houston last week. The CT scan revealed a number of easily measurable tumors plus growth in the amount of measurable tumors (what some of us refer to as sand or rice in the peritoneum.)
Dr, G stopped the letrozole (this is typical) and told me I was not recurrent but progressive instead. He mentioned the possibility of mixed HG/LG tumors again. He considered Doxil, Avastin and MEK inhibitor. He decided on Doxil first and I’ll start it next week and go see him in 3 months. I’ll be going to Texas every three months from now on and racking up the frequent flyer miles. I am grateful though to be able to be treated by Dr. G and benefit from his continuing research on low grade. As you can see, even though we are low grade, we are all different. This can be so frustrating at times. Best of luck to you!
HI Suzanne, yes I can see how frustrating it all is. Did you have your ovaries removed because of cancer 30 years ago, and have you thus been cancer free all these years? Maus mentions Dr Gershenson and I will be looking up all his information. Sorry to hear of the mixed HG/LG tumors. So horrible. (having mixed HG/LG tumors did actually cross my mind as a possibility prior to you mentioning it.) And also because under the Olaparib medicin dosages etc it does state that Olaparib is for maintenance for BRACA positive patients with HG cancer. I have LG??
Ive heard mention of Doxil before and it is going onto my list of questions. Better to be armed , just in case! Please keep us informed. Hope the Doxil works well for youXXXXX
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. It's the big game if chance we play, until onkotype-testing (or whatever it's called now; the testing of tumour tissue samples' response to various meds, in order to evaluate and estimate potential treatment success) becomes more relevant for OC, standardized and widely available.
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