I am 54 postmenopausal with a significant family history of BC. I have had negative genetic results.
Lumpectomy which reported ER + HER2- IDC 42mm grade 2 with high grade DCIS. Two positive lymph nodes both macro deposits of 5mm. Pathology report stated both lymphovascular invasion and extra capsular spread. Total lymph node clearance and thankfully no further positive nodes.
Waiting on oncotype result but when speaking to oncologist he stated this was only part of the picture and other aspects such as lvi, ecs and my preferences would be taken into acount when deciding if chemo is beneficial.
Just wondering if anyone else who was post menopausal had a low oncotype score but still had chemo. Trying to get my head around whether to have chemo if low score as feel i would need to do everything i can.
Really stressed and would appreciate opinions from others. Thanks x
I would question how significant they feel the LVI and extracapsular spread are, as they could, but donāt necessarily mean that cells have already leaked, whereas oncotype (I think) is to do with recurrence risk. I speak as someone who had spread to the liver from vascular invasion at the tumour site and no lymph node involvement. But I had grade 3 TNBC which is a much higher risk cancer. Oncotype isnāt done for TNBC.
Thanks for your reply coddfish, really sorry to hear thatyou now have liver involvement
I guess that is my biggest concern not knowing whether there is any micro spread anywhere. I just feel that if i am given the option of chemo even with a low recurrance score that for my own sanity i would need to have it, but also aware of the risks of having chemo as well x
I am very similar to you, only difference first op lumpectomy and sentinel node removed, margins not clear and cancer in sentinel node so op two margins clear and 14 nodes removed but no cancer in those.
I did do the Oncotype test and got a score of 31 and elected to do chemo after considerable research and meetings. I have just completed my 3rd round of EC and have my first round of 3 of Docetaxel on Monday. I have to keep reminding myself this is preventative but sometimes itās hard, lots of mental inner battles. My oncologist said before my result was in said what would I do if it was 25 (26 was the cut off I was told) and I said Iād still do chemo but if it was 5 I wouldnāt. So a score of 31 to me was similar to getting 25
As far as chemo goes EC has been OK, manageable symptoms quite a few but I have been able to deal with them but for me the worst was the acid reflux, my last round of EC was dreadful tho, primarily because my brain wouldnāt do what I wanted it to do. Iād think Iād said something but my husband and daughter would say it didnāt make sense or ask me to explain what I was trying to say. The fatigue is mind blowing, I fall asleep on the sofa at the drop of a hat, I have never been able to do that before, ever.
No lies it is rock and a hard place time, but ultimately it is your decision and yours alone. I have already told my onc I do not want hormone blockers and heās said heāll work with whatever decisions I make. Iām 54 and was on HRT before all this shit hit the fan, have stopped the HRT (April) and feel like I did before I went on HRT so hormone blockers feel like theyāll take me to the next level of hell. I am trying to balance all my levels with diet with the help of a dietician.
This website is a great font of knowledge, everyone is here to help as best they can. Good luck x
@nicnac17 thanks gor your reply, sorry you are having such a rough time with chemo
I just feel that if like you i had a higher score that the decision is more or less taken out of my hands. If i get a low score i just dont know if i could cope with the constant what ifāsā¦ and at this moment in time cant see me getting past that
I am due to get results next week but trying to get a decision straight in my head. I guess it doesnt help that i have had several family members who have had BC treated with RT and tamoxifen who have then had it spread which proved terminal x
Yes thatās very true about the higher score but the whole point of the oncotype is whether your type of cancer would respond to the chemo.
Have you done the genetic testing or the BRCA testing?
Having been where you are I completely understand your situation and your thought process. Itās so scary isnāt it these huge decisions we have to make about our bodies and lives.
Hi, I found all these decisions very difficult too. I donāt know the answer but from reading your post it would appear your oncologist is saying other factors should be considered as well as the oncotype score. A stage one cancer and a stage 3 cancer could have the same oncotype score but because one is more advanced I would have thought this fact would effect the treatment plan but like yourself I struggled to make a decision but did end up having chemo after entering the Optima trial.
I was pre-menopausal and had 38mm IDC HR+ HER2- with one sentinel lymph node showing macrometastasis with extracapsular and lymphovascular involvement. I donāt believe the Oncotype test was done on me, I had a Ki-67 rating which came out middling. I was just told that I had to have chemo. Didnāt even ask for me to decide they just decided for me. It was a shock at the time because Iād been told I had caught it early and that it was stage 1 and then the post surgery results changed everything. I recall sitting in the office with my Oncologist giving me very sombre instructions about chemo and its side effects and I totally understand why anyone would be fearful. I know I was. I wonāt say it was a walk in the park but it was manageable for me. I had EC and paclitaxel. The worst one for me was EC which left me feeling drained and sickly. When I moved to paclitaxel that was much easier on me. I would basically spend the day of the chemo in bed because the IV antihistamines knocked me out and then the following day I would feel pretty fresh.
It must be incredibly daunting to have the decision put into your hands but do remember that noone knows how they are going to react to chemo until it actually starts unfortunately. The medical professionals have to just arm you with all of the risks as is their duty and you may find some or none apply to you, much like if you read the patient information leaflet of everyday medicines like paracetamol.
Whatever happens next you have a community of people here who are in your corner and cheering you on and should you have any questions or just want to vent then weāre all here x
Thanks for all the replies and advice i really appreciate it
I have an appointment with the oncologist this week so will get my oncotype results and discuss my options then. My gut feeling is to throw everything at it regardless of score as i dont know how i would cope psychologically if i had the option but didnt take it x
It was found during my original treatment, it was probably there āde novoā. After a lumpectomy I had 4 cycles of EC and then started 12 infusions of Paclitaxel. I was in hospital within a few days of the first Paclitaxel infusion with diverticulitis and had the scan then.
Personally I would throw everything at it. Short term pain, long term gain as the saying goes.
I am of similar mind to you about the RT and Tamoxifen and long (5-10 years) term recurrence rates. I wasnāt given a choice, even thou I begged for chemo as I had cancer cells in blood vessels. But as it only had a small benefit the answer was no. I think any benefit, no matter how small should be patient choice.
I donāt object to guidance and expert opinions. Every one says itās your body, your life. Some may want the medical team to make that decision for them, but others may want to make an informed decision about their own futures.
Hope you get the answers and treatment you want. Thinking of you x
@Coddfish, really sorry to hear that it was found during your initial treatment, that must have been such as shock.
When I was first diagnosed it was thought that I had a small grade 1 15mm tumour with no obvious lymph node involvement. It was at the beginning of the school summer holidays and since we had holidays booked I asked could we delay surgery by a month and was reassured it would make no difference at all
Fast forward to initial results post lumpectory and SNB and it was 42mm grade 2 with lvi, and 2/2 sentinel nodes positive with macro deposits of 5mm and ecs. There was also high grade dcis and malignant calcification in both the dcis and idc
I really struggled to get my head around how i was in this position as due to family history i have yearly mammograms and nothing showed up previously. I have had negative genetic testing even though 2 first degree relatives and 4 second degree. Both first degree relatives went on to have lung cancer which proved terminal for both
I worry that the delay in surgery may have resulted in the cancer spreading and feel i need to do everything i can to mitigate any risk. My understanding is that oncotype looks at the risk of recurrance but obviously does not take into account lvi or ecs and the potential of initial spread
I hate feeling so paranoid all the time and just want a plan in place so i am not in limbo x
@sal1 thanks for your reply. I am surprised that your oncologist dismissed your concerns, did you have the oncotype test done?
I have my oncotype results this week, the waiting has been horrible. I have a feeling it might come back low but will just have to wait and see. I would love to be in a position that if it was low and suggested i didnt need chemo that i would be relieved but i know that whatever the score i need to feel i have done everything I can for my own sanity x
My oncoscore was 12. I am 50, and the cut off for 50 and under, is a score of 15.
I know 12 is quite low, but I donāt have faith that RT alone is going to catch all those cancer cells, knowing they are in bloods vessels. I was also borderline HER2Ā±, retest came back HER2- grade 3. Chemo had a 3% benefit (3 in 100). I canāt help thinking, I could be one of those that could have benefited. My mum had breast cancer, and is still going strong after 30yrs, she had mastectomy and chemo.
Iām sure it will all be fineā¦.iām in an emotional roller coaster at the moment, while waiting for RT. x
Hi sal1, it really is a constant worry isnt it. Are you having hormone therapy as well as the radiotherapy?
I know exactly how you feel so I canāt offer any words of wisdom in coming to terms with your treatment plan but sending lots of virtual hugs and always here to support as are all the others in this forum xx
@cherry202 yeah started Tamoxifen nearly 4 weeks ago. No adverse effects yet. I know some suffer terribly with side effects, but going to give it my best shot as itās important. Will also be having Zoldex at some point to ātestā how I am with ovary suppression. Long term will probably have ovaries removed.
Itās such a long processā¦.if only it was as easy as removing the tumor and then recover!
Hope it goes well for your appointment, if you feel up to it, please post how you get on x
Itās hard to be given options as there is so much to consider so I feel for you right now.
I was surprised that with positive nodes, chemo was given as an option but maybe itās to do with your particular case.
Speaking from someone who had a recurrence and didnāt have chemo (I had 5mm IDC present but no positive nodes following mastectomy and sentinel node biopsy, oncotype couldnāt be registered as cancer was so small and therefore no chemo was recommended). I think do everything you can to kill the cells. I was on tamoxifen but still came back.
Chemo will go quickly and you will be out the other side in not time. There are so many things now to mitigate the side effects that while itās very tough itās doable.
Ask your oncologist also about abemaciclib too which is a new enough drug to prevent recurrence and with two positive nodes you should qualify.
Thanks for your reply really sorry to hear you had recurrance. Was this quite soon after initial diagnosis?
I will obviously discuss further with my onc later this week but i think i will be heading down the chemo route. Iknow there are no guarantees but i really need to feel i have done absolutely everything i can x
