28 unsure on what treatment plan to take
I’m 28 I was diagnosed on the 11th of November 2019. I’m living in Busselton and being treated in Bunbury but have to go to Perth for some appointments. I don’t know the lingo as it’s all very fresh. ...
Forum Discussion
Hello...I'm 27 in Qld and finished treatment in September this year, ER/PR+ HER2- lobular not ductal...
Very scary time and I feel for you being left in the dark...my hardest time was between surgery and chemo deciding whether I should do fertility preservation. I personally was all for chemo and it was difficult, not going to lie, but I was very okay with going through it.
My tumour was bigger and I had one micromet in one node...however I discussed the Oncotyope/Mammaprint tests with my team at a tertiary hospital and they said they really didn't think it was worth me spending the money and that they would generally offer most young women chemotherapy still. They explained this is due to the younger at diagnosis generally there is higher risk of recurrence. This data is supported worldwide and I have read a lot to studies this year about this.
I feel you will benefit from a second opinion to see if multiple teams agree no chemo. The vast majority of young women under 35 I have made contact with around the world this year all had chemotherapy.
Definitely not trying to convince you to do something, as someone above said chemo can cause side effects, I myself have some feet neuropathy. Just trying to show you that there are alot of us out there under 30 who have had chemotherapy, even with smaller tumours like yourself. That being said...in the older women population ER/PR+ HER2-ve disease is definitely moving towards no chemo if it is early with no node involvement.
I have a doctor pal who was diagnosed same as you aged 25, she only did 4 rounds of chemo versus my 8. Perhaps you could do something like that... ?
Fertility - agree with the statement from the fertility specialist about no need to preserve eggs if no chemo, tamoxifen in theory shouldn't damage your ovaries. Chemotherapy is known to, about 1 in 3 young women will not get their period back after chemo. In saying that, my girlfriend who was diagnosed at 29 same time as me this year in February has had two periods already since we finished chemo in July.
There is a drug called Zoladex which you can take via monthly injection; this is done for two reasons. It turns off your ovaries so the theory is it will help preserve ovarian function during chemo if they aren't fully functioning during it. You have this option if you want to proceed with chemo but don't want to or don't have time to go through egg preservation.
The second is that it lowers oestrogen circulating in your body which for some higher risk hormone positive BC patients this is recommended to do as part of ongoing therapy with tamoxifen or another drug class called aromatase inhibitors.
I was a part of a video to assist young women who have just been diagnosed with BC around fertility treatment and it came out a few weeks ago..here is the link https://www.youtube.com/watch?v=MVmF0kNUv5g&feature=youtu.be
My advice regarding needing advice at this time of year is to phone the larger hospitals in Perth and ask to be put through to the breast cancer nurses. You need help making decisions right now and I would just see where that gets you. However from personal experience being a nurse myself, alot of those positions do take annual leave right now and I wouldn't expect most to be there until the 6/1/20. Which sucks and is cruel.
I hope some of this stuff helps.
Very scary time and I feel for you being left in the dark...my hardest time was between surgery and chemo deciding whether I should do fertility preservation. I personally was all for chemo and it was difficult, not going to lie, but I was very okay with going through it.
My tumour was bigger and I had one micromet in one node...however I discussed the Oncotyope/Mammaprint tests with my team at a tertiary hospital and they said they really didn't think it was worth me spending the money and that they would generally offer most young women chemotherapy still. They explained this is due to the younger at diagnosis generally there is higher risk of recurrence. This data is supported worldwide and I have read a lot to studies this year about this.
I feel you will benefit from a second opinion to see if multiple teams agree no chemo. The vast majority of young women under 35 I have made contact with around the world this year all had chemotherapy.
Definitely not trying to convince you to do something, as someone above said chemo can cause side effects, I myself have some feet neuropathy. Just trying to show you that there are alot of us out there under 30 who have had chemotherapy, even with smaller tumours like yourself. That being said...in the older women population ER/PR+ HER2-ve disease is definitely moving towards no chemo if it is early with no node involvement.
I have a doctor pal who was diagnosed same as you aged 25, she only did 4 rounds of chemo versus my 8. Perhaps you could do something like that... ?
Fertility - agree with the statement from the fertility specialist about no need to preserve eggs if no chemo, tamoxifen in theory shouldn't damage your ovaries. Chemotherapy is known to, about 1 in 3 young women will not get their period back after chemo. In saying that, my girlfriend who was diagnosed at 29 same time as me this year in February has had two periods already since we finished chemo in July.
There is a drug called Zoladex which you can take via monthly injection; this is done for two reasons. It turns off your ovaries so the theory is it will help preserve ovarian function during chemo if they aren't fully functioning during it. You have this option if you want to proceed with chemo but don't want to or don't have time to go through egg preservation.
The second is that it lowers oestrogen circulating in your body which for some higher risk hormone positive BC patients this is recommended to do as part of ongoing therapy with tamoxifen or another drug class called aromatase inhibitors.
I was a part of a video to assist young women who have just been diagnosed with BC around fertility treatment and it came out a few weeks ago..here is the link https://www.youtube.com/watch?v=MVmF0kNUv5g&feature=youtu.be
My advice regarding needing advice at this time of year is to phone the larger hospitals in Perth and ask to be put through to the breast cancer nurses. You need help making decisions right now and I would just see where that gets you. However from personal experience being a nurse myself, alot of those positions do take annual leave right now and I wouldn't expect most to be there until the 6/1/20. Which sucks and is cruel.
I hope some of this stuff helps.