Worried

[nicolaruth]

Thanks for this . My oncologist is still recommending no treatment but this is on offer if I choose as I am so borderline . You are right it sounds very similar to your situation and the side effects don’t seem so bad . I have not been offered any real indication of how much it reduces the risk of a recurrence so I may ask .

it just seems that Her 2 is best treated with Herceptin however tiny the invasive tumour .

thank you so much for sharing 

[rt1980]

Again - I had exactly this!!! I had specks of microinvasion so was told I was borderline and that it was my choice. My oncologist did give me a nudge to suggest I went for it though and my family all wanted me to as well. 
obviously it’s up to you but what I would say is that the paclitaxel (for me) was pretty easy to deal with. I didn’t really have any significant side effects. I’d feel tired after treatment that day only but I think that was from the antihistamine they give you more than anything. Felt fine the next day and rest of week. Had a few strands of hair come out but otherwise cold capping kept my hair. Other than that, compared to some it was pretty easy. I’m still having the herceptin and that pretty much gives a nasal drip for me and that’s it. Occasional aches in the joints but very mild. 
herceptin I’m told is a very impressive (and expensive) drug. If you’re being offered it then in my view it’s worth seriously considering. Many people aren’t offered any such treatment so the one good thing about Her2 is that herceptin is available. It’s supposed to have very good results. 
I think in the end I just thought about whether I wanted to do everything I could - if the worst case scenario happened and it came back I knew I would kick myself for not taking the treatment. It was probably a bit of a sledgehammer to crack a nut approach but I wanted to minimise every bit of risk I could and start a war against any cancer that dared to remain in my body! 
Do let me know if I can help any more. X

[nicolaruth]

So I appear to be borderline for a chemo and Herceptin recommendation . They seem to be leaving it up to me which I find hard .

The  basic recommendation is treatment would not substantially improve my prognosis but they are prepared to discuss/ agree the option of a regimen of Pactlitaxol  for 12 weeks andHerceptin ( 6 months concurrent ) given a poor PREDICT score . They say it’s a matter of patient preference . Their basic position is to recommend no treatment but given the Predict score they have put forward this option ( the poor predict score seems to be because I am Her2 positive and oestrogen negative despite small tumour )

 I am advised the PREDICT  modal is not a very accurate indicator for me as it is created on research involving tumours over 1 cm and mine is tiny at 2 mm.

I really don’t Know what to do ! Is it usual to leave it to patient to decide 

[nicolaruth]

I will definitely think very carefully about it . I want the most effective treatment possible .It sounds like the chemo was manageable for you that is very encouraging . Sounds like you really smashed it !

i am feeling more positive today - the waiting is hard -  but I can see a way forward whatever the outcome .

Thank you - these comments are really helpful . It can be very lonely and i do have a tendency to ‘overthink ‘ !

I really appreciate your help x

[rt1980]

yes, I was a week away from going back when I heard the bombshell that they wanted me to have chemo with herceptin. If they do suggest that, you should (IMO) consider it carefully. Herceptin is a very effective drug - I’m told - and the chemo they put you on to administer it is a “gentler” form so to speak!! No hair loss or sickness. The only side effects I really had were nose bleeds occasionally. That was about it. 

[nicolaruth]

Thank you for replying , it is just so scary and I am still waiting to hear .Hopefully I will hear something Monday . I am glad that the chemo and Herceptin was not too bad for you. It is difficult to plan for work . I was hoping to go back next week as it’s 4 weeks since my mastectomy but I need to know  what is happening next . 

[rt1980]

I had this almost exact scenario. They told me no further treatment but then changed their mind once they realised it was Her2 and advised I start on herceptin - which means it has to be given alongside chemotherapy. That was all fine actually. Bit of a shock tho.

[nicolaruth]

Thank you that’s really helpful . Herceptin was mentioned when Her2 was diagnosed but then they said no further treatment.  I  will ask more questions when I hear from them further  . Thank you for the reply x

[Mai7]

Hi nicolaruth, sorry to hear things have been on the move again and you’re back in the anxiety boat.  In my experience it isn’t that unusual for people to have a second appearance of cancer with further investigations and revised plans.  For HER2+ the usual treatment is herceptin.  Was that mentioned to you?  I wonder if perhaps your case could have been borderline and has been through a second review panel?  That’s just me speculating but the decisions are never as clear cut as we realise.  They will always have your best interest at heart but it’s a lot for you to cope with mentally.  I hope you get your results soon. Sending hugs. Xx

I recommend you post a message to the nurses if you want to get a better understanding of what happens behind the scenes: https://forum.breastcancernow.org/t5/Questions-about-primary-breast/bd-p/primarybc 

[nicolaruth]

Hi 
After a diagnosis for DCIS In March and a very difficult ( Covid delayed ) route to a simple mastectomy I finally had my pathology results last week . They found a larger area of DCIS than anticipated 90mm and sadly a 2mm invasive ductal cancer that is HER2 positive and hormone receptor negative . Clear lymph nodes .

I was advised on 11th May that the MDT recommendation was no further treatment and was elated . I was simply expecting to wait my reconstruction.
However yesterday my nurse contacted me and said the oncologist now wanted to see me and was referring me back to the MDT meeting tomorrow . she seemed surprised at this as the original recommendation was in writing and mentioned he had now done a Predict test .

i am now waiting and worrying to be contacted further. I thought I was done for treatment but who knows now . Is this usual ?

why would they change their mind ? I cannot sleep or focus on anything . I have no further appointment - they anticipate it may be by telephone -and must simply wait.

is this usual ? What can have changed since the last MDT meeting ?

(I am 58 and post menopausal .)

thank you