I'm considering refusing chemo

do you have any idea what could have caused your triple negative? Were your nodes involved?

I'd do the chemo too. I get you're looking at the numbers and seeing a 10% difference, but let's be clear- it's a 10 percentage point difference. Let's look at the numbers on the flip side- doing the chemo puts you at a 10% risk of the cancer recurring and if you opt not to do chemo you've got a 20% risk of it recurring. To put that in perspective, your risk of developing breast cancer with no family history is around 13%; triple neg bc accounts for up to 20% of all breast cancers diagnosed. 20% of the 13% overall risk is 2.6%. You have better odds doing the chemo and having 90% chance of no recurrence

I have just completed 2 rounds of TC chemo and ended up in the emergency room on iv's and once told this was my one pass to be released instead of admitted to the hospital, sent home with major antibiotic. I am on schedule to have 4 sessions of chemo, so 2 left. I did have a lumpectomy and clean lymph nodes. 100% estrogen driven tumor with no invasion beyond the tumor. Because of my reactions to both chemo infusions, which I get ever 3 weeks, I am considering discontinuing any further chemo treatments. They are saying I am HER2+, however after 7 different tests on the tumor and the 2 core biopsies I had, 5 were not conclusive as positive or negative, one was negative and then one finally came back with a small show of positive. It has been a question from the beginning if chemo was recommended, but the oncologist, after meeting with other oncologists (team), decided to go with 4 sessions of TC with Herceptin. I do receive all these at one time and then am sent home with the Nulesta on-pro for the after chemo shot. I have MAJOR reactions to that shot.

Just don't know if I am having an allergic reaction to one or all of the chemo drugs or if this is normal to have extreme reactions to them. I am calling to set up a face to face meeting with my oncologist to discuss options and prognosis if I stop the chemo before my next infusion.

I know I'm a little all over the place right now, but I'm so confused and don't know what to do or how to handle this. I could use some suggestions and/or support.

Thanks for letting me ramble.

53nancy, they are still working on it in Manitoba. There was a trial with about 60 tests provided by Oncotype and they are checking on cost effectiveness, I presume. I missed out on that and paid for it myself.

The test is for ER+ HER2-breast cancers.

Hello avmom, felliw Canadian. I lived in Alberta twice and loved it there, but am an Ontario girl born and bred. I know the Oncotype test is available in Canada and several Provinces use it, but can find nothing to indicate Manitoba does, and Manitoba lags behind other Provinces in Health Care. I am certainly thankful, though, that my treatments WILL BE covered by Pharmacare. Thanks so much for responding and all the best in your journey.

Pi-Xi, thanks for sharing. Do you mind also sharing where you went for your test and an approximate cost? I also wonder if it would not be effective forTNBC. And I am curious, if you are in MB, how long you waited between suspicion of cancer and actual treatment with chemo/rads, though I am not sure from your info if you did chemo. It has been five months for me, and I don't see the syrgeon for another two weeks. No results of node biopsy yet. Take care, and I hope you do well

53nancy,

My oncologist ordered the test and sent the sample of the tumour. Genomic Health sent me the bill which was about $4400, but I got a reduction for paying it all at once. I think it was $4161. It is only valid for ER+ HER2- tumours.

I am in Manitoba. From mammogram to surgery was seven months, but six of those weeks were my fault. No chemo or radiation

53nancy, if you were eligible for the Oncotype I would tell you to contact the company directly and they could probably cut you a deal. I have heard that happens. Being triple negative, it wouldn't be valid for you, so you don't have to incur thatcost. (After not being able to return to work full-time for a year, I wish I had tried to negotiate!)

avmom, .Just wanted to share my happy (ier) news. I saw my surgeon Oct 12 and, though there is still one test to be done on my Lymph Node Biopsy, he seemed confident in telling me that I am Stage 1, Grade 3, NO Node Involvement. He didn't specify A or B for Stage 1, but the best I was hoping for was Stage IIB and I really expected it to be be Stage III. The referral to Cancer Care will be sent tomorrow, and I don't know how long I will have to wait to go to Winnipeg, but apparently the Triple Negative Status will require that, though I have been told treatment will be in Brandon. Meanwhile, I will be booked for an Abdominal CT Scan and a Full Body Bone Scan, also in Brandon, so it sounds like a busy time ahead. Hiwever, I have been told that Cancer Care will not see me until they get the results of those scans, so I could be looking at months

Pi-Xi Yes, I was surprised, too. The surgeon told me that I would not get this scan through Cancer Care, because of my stage. This Nuclear Medicine Department is only about four years old, so I consider myself lucky. It will likely involve another radioactive injection, than two to three hour wait, then have to lie still for an hour or more in the machine. The process is proving to be long, but I have to admit that he has been cautious. If the scans are clear, I will have to decide whether I will refuse chemo, and he knows I don't want it. I did have a blood sample taken for creatinine on Fri. I think that is for kidney function, but both my liver and kidney function were good in August. I assume theabdominal scan will check for cancer in the liver.

Also, do you mind sharing where in MB you are. We are south of Brandon

Nancy,

I think I was wrong about all Invasive TNBC having chemotherapy as standard of care. I see you have just 1cm tumor, and in my Alberta health resource documents, you might only be considered higher risk if you were under age 35 at age of diagnosis. However, it seems to me that you might be considered to have intermediate risk for recurrence and chemo is likely still recommended, but the regimen would be different.

In any event, this is a decision I urge you to work through carefully

avmom, thank you for the posts today. I hope you are doing well. I think I forgot to mention I got proactive on my own behalf when I found out five and a half months ago about my abnormal mammo. I immediately started using therapeutic grade essentialoils on my breasts and feet. When I received my diagnosis in mid-August, I immediately started changing to an Alkaline diet, raw fruits/veggies, no sugars, using oils every way I can, increased supplements to boost my immune system, and walking. I just wish I had started earlier. I may be wrong, but I give these changes a lot of credit for my low Stage, and that helps me to keep a positive attitude. I am almost 64, my husband is ten years older and we have no children, so it makes the possibility of no chemo easier to handle. I will consider all options before I choose. Take care of yourself

Hi Nancy,

I did eight rounds - ACx4 followed by Tx4, but both were done as "dose dense", every 14 days rather than every 21 days, so I started in early March, and was done by the end of June, about four months. It was pretty intense, but here I am still.

After my first MX, it was thought that I was Stage IV, but after pathology came back and all of the staging scans, I was restaged to Stage II. Although my risk of recurrence was high, I was so relieved to have gone from "there are things we can do until you have progression" to considering chemotherapy with "curative intent" that it wasn't that difficult me to choose heavy duty chemotherapy. I'm comfortable with that decision, and when I had a "prophylactic mastectomy" later that year on the other side I found out I had 6.3 cm of mixed ER+, PR+ DCIS and LCIS, to go with the 4.5 cm of TN IDC and 8x8x3 cm TN DCIS on the right side. Crazy, I know. I never had a palpable lump on either side, and none of the in situ stuff showed up on imaging, neither on diagnostic mammogram or ultrasound. I understand that this is quite rare.

I did a radiation consult, and when I got there it seemed that radiation treatment was assumed to be going ahead, but the risk/benefit ratio was not very favorable so I did not have rads. After my second MX, my MO had all of my slides sent to a different lab and retested, and my file was presented at a multidisciplinary meeting to consider whether additional treatment would be recommended. After all that, my oncologist recommended observation for now. I'm on a six month checkup schedule at the big city cancer centre, and annual checkup at the regional satellite clinic, and have a thyroid ultrasound every year.

All anyone can do is to be proactive and make the best decisions you can, in the moment. I find that I am at peace with my treatment decisions so far. That said, I would have preferred not to have had to make those choices. If I have learned anything, it is that nothing is free here in Cancerland

Gentle hugs.

Oh, Nancy,

I so didn't share any of my experience to even hint that your experience is "minor". I don't think anyone's cancer story is minor - we each have to follow the path where it leads. Cancer is not competitive, it is just a horrible disease, for everyone touched by it. I am so fortunate in so many ways. Here I am, nearly three years from expecting to be stage IV, and at the moment, the only really active treatment I'm doing at present is ultrasound treatments in my feet! I do have some persistent neuropathy and we are trying ultrasound for now.

Like you, I feel strongly that I want to be a helpful, encouraging presence. It makes me feel useful if I can use my experiences to help someone else, and I hope you can draw some encouragement from me.

Enough about me. Whatever you choose, you can move forward, come what may.

I know a bit about the area where I guess you live. My Dad had family that homesteader in this Souris area about 100 years ago, and my DH was from McCreary, though he was born in Ste. Rose du Lac, because McCreary had no hospital in those days. His aunt and great aunt had cabins in the temporary campground at Wasagaming for many, many years. It is a lovely piece of the world.

Gentle hugs.

Heavens no, Nancy, I am not offended. I just didn't intend for you to feel that your challenges are in any way "less" than those faced by anyone, and certainly not me. Most days, I don't feel particularly courageous; sometimes I just feel overwhelmed.

This week, I'm quite consumed with moving my Dad into a lodge. It's a big transition for him, and means moving closer to me and my brother. He has been having some cognitive issues, and is facing an assessment from the driver's licence folks, so he may be losing his driver's licence. The loss of independence will be so hard for him. Thank you so much for your kind words of encouragement.

I've never really been to Boissevain (have driven by) but I went to university with someone who married someone from there, so I know where it is.

Feel free to PM me if you have any questions or concerns

Well, I got my SNL pathology report and Bone Scan results today. All nodes are clear, and Bone Scan does not show metastases in the bones, but does show osteoarthritis in the spine, shoulders, elbows, wrists, hips, knees and feet. I am not sure what scares me worse ; the cancer - which so far is not shown to have metastasized depending on the abdominal scan on Monday, or the osteoarthritis. It feels like I have been hit with a double whammy.