Early stage breast cancer #4 (recurrence #3)
Hi everyone, reaching out to find anyone in a similar boat which I call the SS "Lucky/Unlucky". I have been dealing with early stage BC for 18 years now since an initial DCIS dx in 2001 (1mm in size - picked up on my first ever mammogram at age 37) - had all the recommended treatment (lumpectomy x 2 for clear margins and then rads). Since then I have 3 more re-occurrences - 2004 (1.5 mm, low grade, mastectomy no reconstruction), 2011 (in chest wall scar - lumpectomy and then 6 years of Armidex) and now late 2018 a 2nd chest wall recurrence. Tumour is ER positive, PR negative, HER negative, grade 2, Ki-67 25-30% (high - although my new Oncologist suggests that Ki-67 is 'the least reliable' prognostic indicator. UNLUCKY!!! Have never had any lymph node involvement or mets. LUCKY!! Have had chest wall reconstruction surgery 3 weeks ago using a flap from my thigh - went very well with clear margins etc. Differing opinions from the experts now about next steps. Advised I should consider radiation (second time around as I had it in 2001 for DCIS), although have been warned about potential heart issues and chronic skin and bone problems. Have been told chemo is also something I should consider. I asked about the Oncotype DX test and was initially told it was not suitable for someone like myself for prognosis or treatment planning, but when I said I was planning to get it done anyway, it was suggested it COULD be used to work out if I would benefit from chemo or not. Signed up for the test yesterday. Best $5K I have ever spent - either way. But I am very aware that not everyone can afford this and think it is a great shame that Australia is one of the few developed nations that does not support the cost of this via government medical programs (Medicare) or private heath insurance. Will get the results week after next. I clearly have something odd (lucky/unlucky) going on with my tumour type, and if I have to have chemo even though there is no node or lymphatic invasion so be it. I have never posted before because I don't want to frighten anyone with my sad story about recurrences - but equally, I figure now I am in some way a good story of how early detection, ongoing monitoring etc. has kept me going until now and hopefully for many more years to come. I am back on Arimidex and my new Oncologist has indicated that I may need to stay on this forever - no worries!! Have pretty much decided not to do radiation a second time as it seems quite dicey in terms of risks and rewards. Anyone have any experience they want to share. Love and best wishes to all on this forum. Cheers MvB
37 year old - just diagnosed
Hi ladies, I have been diagnosed with early stage, grade 2, DCIS in early January (ER+, PR+ and HER2 negative). Since then I had lumpectomy with clear margins and sentinel node biopsy. Sentinel node biopsy found a tiny speck of cancer cell (less that 0.5 mm) and oncologist is pretty sure it did not spread anywhere else and they call it micro metastasis. I have done CT scan and bone scan just in case which are all clear. I was expecting radiotherapy and hormone replacement therapy as a treatment as mentioned by my surgeon. I was totally shocked to find out that oncologist is recommending invasive chemotherapy as a treatment (i believe it is called AC chemo). I am totally scared and petrified and can not come to terms with chemo. Just thinking about it makes me go into panic mode. I have seen another oncologist for a second opinion and he also suggests chemo as a treatment for me purely based on my age and the other indicators which are kind of on border line. I have just ordered Prosigna test as recommended by oncologist. Just waiting for results it's making me so nervous. I have two kids aged 8 and 4 and don't know how am I going to go through chemo if I have to (i know it is totally up to me). Wondering is there any ladies with similar age and in similar position and what is your opinion on chemo? Like I mentioned I am totally petrified of chemo and how would my body handle it. I am very skinny person and don't believe I would handle chemo good. Even breast care nurse told me I am too skinny for chemo and to try to eat up in case I decide to do it. Any experiences shared would be greatly appreciated.
Oncotype Testing
I was diagnosed with Early Cancer - Oestrogen Positive - 3 February 2022. Since then I have had surgery to remove the lump. I saw my oncologist this week for a treatment plan. Due to my history, Hodgkins lymphoma 1998 and non Hodgkins lymphoma 2008 , sister and other family members with Breast Cancer, and the markers found in my lump she wasn't sure if Chemo would be a beneficial option. She has suggested Oncotype Testing to give a 100% guarantee that Chemo is needed or not. I have no worries with this as I'd rather not have chemo if it is not needed. What go me mad was the cost of this test $5000!!!! There is no Medicare rebate and not covered by my Health Fund, I was fortunate that we were able to juggle a few things around to pay for this - but what about those who can't afford this. When the information provided isn't that clear and it's a matter of a coin toss whether to have or not have chemo what would you do? I know it makes it sound like my oncologist isn't giving me clear advice but she is very and good and has provided me with lots of information, hence taking the option to do this testing. Cancer is hard enough as it is without the added financial strain of such an expensive test. There are so many other subsidised tests and programs why isn't this one. Apparently we are the only Western Nation where the government doesn't provide a rebate. I have wrote to the Minister for Health a strongly worded letter and suggest that everyone do the same.
First mamogram ever
After losing my husband 19 months ago to stomach cancer (55) after only a 10 month diagnosis , I was defiantly going to go and have my 50 year old mammogram . Low and behold , I was diagnosed with stage 1 breast cancer , no lump , nothing . Couldn’t believe it . I just couldn’t believe I was going to have to put my kids through this all Over again. It was really hard telling them. Fast forward and I decided on radical treatment . Double mastectomy, during which I had sentinel node biopsy and ended up with axillary clearence / one node positive is it of 10. Now I’m considering the treatment plan. My daughter is getting married in 5 weeks so it’s all happening at once . I’m having some genomic test done to see if chemo will benefit me or if hormone therapy alone is going to be enough. Having to wait 2 weeks for this result is hard . Has anyone else has the testing done?
Genomic Testing
Hi, I was diagnosed 1 month ago, and had a bilateral mastectomy last week. My tests came back yesterday and although one Lymph node was clear, another had minimal cancel cells present from my left armpit. Apparently i am a N0 category. Although my surgeon is going to get other doctors opinions etc if i should go ahead and have chemo, i thought i would research Genomic testing too. I have my oncology appointment this week. I am stage 2 (not sure if A or B ) , ER+, PR+, Her2-. Is there anyone that has recently done the test, if so is it possible to give me abit more info on it, cost, timeline, name of test etc. Thank you in advance, this has been such an emotional ride so far, but i am grateful to have had it diagnosed early.
Genomic Testing?
Hi, this is my first time posting. I was diagnosed 17 October and have had a nipple sparing double mastectomy (left breast had tumors) followed by auxiliary lymph node clearance 3 nodes had cancer. Chemo is set to start in December. I cry everyday. I have ordered the oncoplus test but by the sounds of it the oncologists wont pay any attention to the result and advise AC & T chemo regardless for 6mths. Has anyone got any feedback on these genomic tests and if it changed the decision to have chemo?Genomic Testing should be the FIRST test, not the LAST!
When we had our first meeting with Hubby's Onc, she was very keen for us to have Next Generation Sequencing done (in the USA) to see if there are any mutations within his tumours that may respond to specific medications (that may or may not be available in Australia.) In the USA, it is done pretty well routinely in a lot of the cancer centres - but many of the drugs used over there, have not been approved for use in Australia, so are not even allowed to be imported, even if you WANTED to try them as an option! She said that eventually, getting this test done FIRST will be 'the norm' ..... but as of now - it is not 'readily available' to everyone, with out paying a fairly high price, in our case, it was $3000. In the Sunday Telegraph this weekend, there was a 3 page article on women with metastatic breast cancers who are NOT able to access some life saving (or life prolonging) immunotherapy drugs on PBS, as they've not been approved for Breast Cancer - but have been for Lung cancer and Melanomas (eg Keytruda.). If you know anyone with a copy of the paper - it is well worth a read too. There was a separate article on the Garvan Institute in Sydney who DO do genomic testing - and is an interesting read. (Sorry it is a bit fuzzy ..... but I hope you can read it.) They were conducting trials last year whereby they made the testing available either free or a nominal $350, which enabled a lot of patients to be tested, who otherwise would not have been able to afford it. The trial ended earlier this year. Our Onc had submitted some of her patients for it. My husband's genomic tests came back showing 2 drugs may be helpful with his treatment that are currently in use in the USA - but sadly they are not approved in Australia, so we are unable to access them for his treatment. :( IF the Gov comes to the party and makes this testing more available to cancer patients - it will be fantastic, as new Clinical Trials that should include BC patients - should spring up everywhere! You can contact him on: d.thomas@garvan.org.au I contacted him and this is part of his reply: Omico has enabled more than 3,000 Australians with incurable cancers, and no other standard options, to access genomic screening, and about one in five of those to access matched therapy. We know from our data, and that being produced internationally, that this translates into clinical benefits, including longer life. But we have resources currently only for 2-4% of those who could benefit from screening. We know we have to change that. We are trying to develop a private-public partnership between government and the pharmaceutical sector. We ask the government to provide genomic screening for all cancer patients with incurable disease, and we ask industry to bring more cancer trials of new drugs to Australia. In this way, we solve the major problem, which is not screening, it is treatment. This is no doubt something very clear to you. If we can bring not only the tests but also matched treatments, without causing people out of pocket expenses, we have a sustainable model for precision oncology for Australians today. Despite being non-profit, Omico has worked very hard at developing industry relationships, primarily so we can develop new trials for our patients. Our experience has been overwhelmingly positive. This leads us to believe that we can create the PPP described above. We have developed and submitted a business proposal to the Federal government, based on economic modelling and discussions with industry. We hope that they will see that the PPP will allow the commonwealth to take the bold step to provide all Australians with genomic testing and matched therapy, without breaking the bank. Health and the economy are seen as polar opposites—but that isn’t necessarily the case. Our modelling indicates that we not only screen 80,000 Australians, and save almost 3,000 years of life for cancer patients, but we create 3,000 new jobs in the high tech sector, and inject $2.8B of value into the economy from foreign direct investment or saved health care costs. https://www.omico.com.au/Genomic testing
Hello My oncologist has suggested genomic testing to see if chemo will be needed or not. The only one I've heard about is Oncotype DX and he's mentioned that one and also EndoPredict and Prosigna. I'm Er+ Pr+ Her2-. Without thinking about the costs of each, is one better than the others? If you've had the test, did you find it useful for making treatment decisions? I'm finalising the surgery this week and need to make a decision on the genomic test. I'd be really interested in your thoughts. Thanks KimER+ HER- | Optima Study
Hi everyone I've just had a very interesting meeting with my oncologist - first appointment post surgery. Fortunately, I'm not a candidate for chemo (utter relief) so we didn't discuss this in any detail, but as we were talking about whether I should get a genomic test done or not, he mentioned that there was a new study about to take place - the Optima Study. From what I gathered from him, it'll offer a Prosigna (I think) test as part of the trial, which would obviously be funded (perhaps 100% - not sure) by the study. I think it'll be for people who are about to have surgery or who have recently had surgery - not sure though. I don't know anything further than that, and I couldn't find anything on any Australian sites about it, but there is some info on UK sites as it looks like the trial is being done there as well. Hope this helps someone - and saves someone a few dollars! Also hope this is appropriate to post!
