28 unsure on what treatment plan to take

Tamlyn Member Posts: 7
edited December 2019 in Newly diagnosed
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. I was diagnosed with stage 2 ductal er+ and pr+ breast cancer. I’ve had the lumpectomy and spoken to the team. They have suggested I do radiation and take tamoxifen for 5 years. They also suggested I do chemo but have left the decision up to me. If I do chemo I will need to freeze my eggs. I have had an appointment at KEMH regarding freezing my eggs. I don’t have any children but would one day love to be a mother. 

Im very unsure if I should do chemo or if I should just do the radiation  and tamoxifen. If anyone has any advice I would love to hear. My breast nurse wasn’t there before my surgery and now has informed me she will be away for 2 weeks. I need to make a decision pretty quickly and feel a little abandoned :(



  • primek
    primek Member Posts: 5,392
    edited December 2019
    There is an oncotype dx test that can be done to see if chemo is worthwhile. It is expensive and I'm not sure how long the results take to come back.  

    This link explains it.

    Contact the Perth Hospital as they probably have more than one breast care working at that hospital.

    Do you have any nodes involved?

    Good idea on egg collection even without chemo due to hormone therapy and at least they are stored when it's the right time.

    Also somebody may still be answering the helpline Monday
  • Tamlyn
    Tamlyn Member Posts: 7
    Thank you!

    I had 6 nodes we’re taken and all were clear. Hence why I’m unsure on if chemo is necessary 
  • kmakm
    kmakm Member Posts: 7,974
    Hi @Tamlyn. How big was your tumour? I ask because the Oncotype test is about $5000, but if your tumour is smaller there's a different test which is about $3000.

    It is ghastly being diagnosed this time of year. It happened to me two years ago (dx 4/12), and "abandoned" is exactly the word I used. Everyone disappeared. I had woundcare questions and no one to ask, huge decisions to make and no one to talk them over with. So you have my sympathy!

    Is there anyone at all in your oncologist or surgeon's office who you can ask about who to speak to in their absence? I'm with @primek, contact Perth Hospital, or maybe try the McGrath Foundation forca breastcare nurse who maybe able to help.

    @JJ70 @suburbangirl, would you have any advice for @Tamlyn?

    Keep in touch here. There's always someone who can help. Big hug, K xox
  • Tamlyn
    Tamlyn Member Posts: 7
    @kmakm it was 19mm and I spoke with the oncologist about the test but she didn’t seem to think it was worthwhile. 

    I’ve had the tumour removed with a decent margin and 6 nodes which were all clear of cancer. I just feel like doing chemo for an extra 4% safety blanket, is really worth while? 

    I was also advised by the fertility specialist not to freeze my eggs unless I was doing chemo. She seem to think fertility would be fine as long as I wasn’t in the tamoxifen at the time of pregnancy. 
  • suburbangirl
    suburbangirl Member Posts: 123
    Hi @Tamlyn and @kmakm
    Sorry to see you here @Tamlyn for all the obvious reasons, but know we all understand what we are all going through; even though we are all different and have our different pathways. 

    Firstly, do you have to make a quick decision about whether or not to have chemotherapy? Could this decision wait until you have your ducks lined up and you can make a decision based on information provided?

    Unfortunately I am unsure what to advise, especially now with the weekend and public holidays coming up. Apart from other members advice, I imagine you really need the facts /statistics on why they are suggesting chemo (or not to have chemo) from those who know your pathology, which would be your oncologist and surgeon. Could you make another appt to see your oncologist, or even talk on the phone with them, to help with your decision?

    If needed there are other resources, BCNA, is someone available at Bunbury Hospital, or Royal Perth Hospital breast clinic 9224 2723 (office hours). They are fully staffed with a medical team including breast nurses. Also SCGH Breast clinic - I think their number is 9346 4590. I understand there is a breast clinic at FSH too. (Fiona Stanley Hospital)

    Thinking of you especially during this difficult time and hoping you don't feel railroaded into a decision without having all the facts and time to consider. If you would like to chat anytime (on the phone) I am very happy to say hello. I understand you can private message people on this site?
  • kmakm
    kmakm Member Posts: 7,974
    So it sounds like you'd be up for the same test as I had if you could afford it.

    It's a tough one, and very individual. I had extenuating circumstances which led my oncologist and myself to think that the test was a good idea. It showed that chemo would be beneficial so I went ahead and did it. It was hard, but I have no regrets. I am comforted by the fact that I have done everything I could.

    Is there someone else with whom you could talk this over? Have you been referred to a cancer specific counsellor? Do you see a psychologist? Have a breastcare nurse? Given you want to have kids I think it's really important to make a decision you're comfortable with.

    @JJ70 and @suburbangirl might have some pointers for someone to talk to in Perth as well.

    Hang in there sweets, you'll work it out. K xox
  • Tip_Top1
    Tip_Top1 Member Posts: 2
    Hi Tamlyn. I was diagnosed this year too and was told chemo was up to me as it wasn’t clear about how beneficial it would be.  Tumour showed low possibility of recurrence but age wise I was at higher risk. I went for the Oncotype test. For me it was $5000 well spent. Showed a less than 1% benefit from chemo. Chemo can be pretty hard on the body so didn’t want to go through it unless I really had to. 
    You’ll make the best decision for you. Hang in there
  • CRM
    CRM Member Posts: 92
    Hi @Tamlyn how awful that you have to make this decision alone. My opinion is obviously not professional but for reference I was diagnosed this year 15mm grade 2 er+ pr+ and did not have chemo. I am interested why you are considered stage 2 with a tumor smaller than 2cm and no nodes positive, it might be worth asking your surgeon. In any case, take the time you need to investigate all options before deciding xxx 
  • jennyss
    jennyss Member Posts: 1,970
    Dear @Tamlyn,

    from jennyss in Western NSW
  • JJ70
    JJ70 Member Posts: 983
    Hi @Tamlyn. I've just had a friend diagnosed with triple positive BC - her tumor 1.8cm. She is doing chemo because the chemo helps the body use herceptin - the drug used for the her2 protein. You don't have this so, your recommendation for chemo is curious to me. I was told that chemo is necessary if tumor size is 3cm or over. 
    I was diagnosed with er+ BC. I read in one study ( a good one from Canada) chances of recurrence for the majority of er+ and pr+ breast cancers are MOST likely for 5-20 years down the track (apparently in more than 50% of cases), rather than peaking at 2 years and relatively uncommon after the first 5 for triple pos/neg breast cancers, so perhaps your young age has something to do with it. 
    What grade was your tumor? Grade 3 tumors are more likely to recur than Grade 1 for example - so this would be something to consider too.

    In my opinion, chemo is not to be taken on lightly. It has caused irreversible damage to my feet that has dramatically affected the quality of my life. Having said that, I would have still done chemo, as my tumor was 3cm, but like you, no node involvement. I didn't want to be 10 years down the track with a recurrence thinking 'why didn't it do that? I should have done that!'
    I think Tamoxifen - although a shit drug to take in many respects will be important. From what I've read er/pr BC - Tamoxifen therapy is important for up to 15 years post diagnosis, with extension to 10 years reducing the risk of late recurrence.. Find out if you have a 'Luminal A or B' tumor - Luminal A responds better to Tamoxifen.
    I read you are in Busselton. I have a couple of friends down that way all diagnosed within the last couple of years. Would you like me to organise a connection - perhaps phone numbers and email addresses? I think @Shellbelle_75 is your tag here on BCNA Shel....been so long since I've used it!

    These are all my thoughts.........from reading, from taking to my oncologist, from friends....

    I wish the medical team you are seeking were clearer with their advice to you....perhaps ask more questions. Get a list of questions together from this thread and other sources and get an appointment with an oncologist (or even two different ones!) as soon as you can after the silly season. I recommend you grill them for some proper answers. This is your life and you need proper medical advice.
  • youngdogmum
    youngdogmum Member Posts: 250
    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. 
  • kmakm
    kmakm Member Posts: 7,974
    I heartily concur with what @JJ70 and @youngdogmum have said.

    No matter what your diagnosis, in the breast cancer world you have to advocate for yourself. Sometimes harder than should be necessary. Enlist a partner or sibling or bestie to do it for/with you if you're not feeling up to it. Take care, K xox
  • Tamlyn
    Tamlyn Member Posts: 7
    Wow! Thank you everyone so much, this has been incredibly helpful!  @kmakm @primek
    @JJ70 @CRM @Tip_Top1 @suburbangirl @jennyss

    @youngdogmum Thank you for sharing your advice and the video! 

    So I have everything lined up for the fertility, they are just waiting for me to make the call on if I am doing chemo. The more I research the more Im finding chemo for my age is very common. The reason I need to make a quick decision is because my cycle should be starting sometime next week and I would prefer to get the ball rolling with treatment as soon as possible. My oncologist did say that my chemo treatment will only be 4 every three weeks. Im also thinking if I need did the  Oncotype DX test and it came back high risk or inconclusive I would still do chemo. So is it really worth paying $5000 for a 30% chance that I wont have to do it? For this reason Im kind of leaning towards Chemo.

    Again, thank you so much for everyones advice and direction I really appreciate it  sending love and healing to all on this crazy journey xx 

  • youngdogmum
    youngdogmum Member Posts: 250
    @Tamlyn as I said my team really recommended not wasting my money and felt chemo was best given age.. it’s no guarantee of course but is hopefully going to give us the opportunity to live into our 4th 5th and 6th decade... 
    Why not do one round of egg harvest when your period comes next week, and keep thinking about it? You can tell the fertility docs you’re going ahead with chemo and then change your mind last minute after the eggs are collected? No one will force you to go ahead at that point if you really aren’t sure. Medicare covered most of mine and I’m guessing being at public KEMH it will as well... we pay $500/yr to keep our embryos frozen so a small ongoing cost if I ever choose to use them... 

    This will give you the opportunity to travel to Perth to get a second oncology opinion in the meantime whilst “brewing” your eggs. 

    If you have an unsuccessful harvest you do have Zoladex to protect your ovaries as I mentioned above. I’ve not met/discussed one young cancer patient who hasn’t been offered that by oncology, one needle once a month for duration of chemo... 

    Merry Xmas :) 
  • Tamlyn
    Tamlyn Member Posts: 7
    Thanks @youngdogmum, I have started fertility and at this stage I think Im going to go ahead with chemo. 

    They have also prescribed me Zoladex for my chemo treatment :) Thank you for all your help, I hope you had a wonderful Christmas x