Changing treatment plan

[Carmen42]

Hi Lynny,
Yes a holiday would do you so much good, I felt like I'd got some of me back after our little break at Center Parcs. You will be quite near the end of chemo by May, so maybe you'll be able to shuffle your treatment dates. I guess all you can do is ask.

Surgical team were very certain that I wouldn't need radiotherapy so hope oncologist feels the same. It's good that he's checking though as it reassures me that they are doing the right thing, just hope he agrees with surgeons! 🙂

[lynny61]

Well done for getting your second cycle! Fingers crossed no radiotherapy for you. It is all the changing and slipping of dates that messes with your head! I am trying to find out if we can have a holiday in May. Was booked a long time ago but needs paid for now, but do not want to delay treatment just for the holiday, although I do think a holiday for all of us would be a good thing.
Lynny
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[Carmen42]

Hi peeps,
Had cycle 2 today, just EC from now on. But spoke with my new consultant and he's going to check my pathology report to make sure I don't need radiotherapy too... please no more changes, I'm getting enough treatment now so just leave me alone!
C xx

[lynny61]

Hi Jets and Carmen
Oh Jets. How awful. I hope you are recovering well from your surgery. It is not nice when the goalposts are moved but hopefully your pathology will all be fine now and you can move on and join us on our chemo road!

Carmen - I got my herceptin by sub cut yesterday and so far so good. Bit nippy when she started (but what's new?) but then was fine going in. Did only take five minutes, although had to wait 2 hours for it to come from the pharmacy!

I had round two yesterday. Seems to be the same as last so far, fine today but expecting to be bowled over tomorrow. I do look,like I have been under a sun lamp all night! I do at least feel like I know what to expect this time, although I know it might not be the same.

Hope you both have a good weekend.
Love
Lynny
X

[Carmen42]

OMG Jets, that must have been really hard to deal with, hoping everything goes smoothly from now on. Enjoy the FEC, it's such fun...!

Saw my BCN today, I'm sure she thinks of me as her difficult case! But possibly my changing HER2 status might cause them to consider how they verify whether people are positive or negative... if herceptin would benefit people then they should get it, so tests have to give accurate results.

Also now wired up for a 48hr (as its a weekend) heart monitor prior to cycle 2 on Monday, if it happens!

Take care xx

[JETS]

Hi Lynne and Carmen x I'm due to start chemo soon ( waiting for letter ) and just wanted to say hi and wish u both wellxx I went from lumpectomy to single mx to bilateral mx in a very short space courtesy of many different tests - no rads but fec chemo then 10 yrs hormone tablets - roll on the summer ..

[Carmen42]

Hi Lynny,
Apparently my herceptin will be given as an injection but I won't start it until after chemo. My second chemo was postponed because of side effects of first cycle. Tomorrow I get fitted up for 24hr heart monitoring and then I see the consultant on Monday to decide what's happening with my chemo. Currently they're talking about just giving me EC instead of FEC. I feel like I'm a medical experiment at times!
What chemo are you having? Hope it's going ok for you and good luck for tomorrow.
Carmen x

[lynny61]

Hi Carmen
Just wondered if you have started your herceptin yet and if so injection or drip? The nurse told me not much difference but wondered which you went for and why. I am tempted by the injection as it is for such a long time and five minutes for an injection sounds easier than half an hour for a drip. Reading your January gemstones posting - don't worry about shouting at your kids. My boys are big and grown up and sometimes I question them on what I consider major issues when they were small and they have never remembered. I used to think I was scarring them for life! I have round two tomorrow, perhaps with and perhaps without herceptin. Good luck to you for Monday. Fingers crossed.

Lynny
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[Carmen42]

Hi Lynny,
Very similar story, and we're at the same point. My chemo started 26th Jan.

I'm almost glad I had a mastectomy at least it spares me radiotherapy! Your treatment will be even longer than mine, not good at all.

When I first had the diagnosis, I had a list in my head of all the good things, ie no chemo, not HER2+, no radiotherapy, immediate reconstruction... and bit by bit they've all been taken away from me. Now left with just no radiotherapy and that it's hormone positive, as that's a good thing apparently!
(Even the immediate reconstruction went wrong as the tumour was very close to the skin so they were worried they'd have to go back and remove more skin so put in an expander implant instead of the planned silicone one, so will be getting that replaced at some point).

Aaargh!!!!

Thinking of you, keep in touch xx

[Carmen42]

That's awful. I had surgery within 2 weeks of diagnosis and every day I was obsessed with the thought that the cancer was in me... really feel for you I cant imagine how hard this is for you. Keep us posted on your progress and shout if I can do anything, even just listening.

Carmen xx

[lynny61]

Hi Carmen
With you all the way. Diagnosed with grade2, 19mm tumour at the beginning of November. Not a problem, surgery, bit of radiotherapy, no impact on my life expectancy (I didn't even ask the question). Wide incision doo dah on 5th December, woke up to nodes removed, drain in (not happy). Tumour was grade 3, 2.5mm (almost an aside it would appear). Surgeon suggested Oncotype dx test because of positive nodes. Saw oncologist at beginning of January, BINGO! HER2 + as well! So Oncotype dx test not suitable anyway. Started on chemo on 30th January. Then herceptin, then radiotherapy, then hormone therapy. Full whammy. Much the same as yourself. Felt like they were feeding me the results in dribs and drabs.
Also like you - a bit cheesed off! At no point has anyone even sat me down and gone through the long term prognosis and the potential impact of the new results.
Sorry for venting! It did strike me that our stories are so very similar. Hope your chemo has gone ok and the se have not been too bad.
Lynny
X

[sentangelo]

Well, first they told me it's to happen 3 weeks after the diagnosis. Then they decided to do a genetic test because of the family history and that would delay the surgery by 1 week as tests results take time to get ready. At the genetics they gave me a slot of 1 week, when the results could be ready, so that postponed the surgery by another week, and yesterday they told me that my surgen would be available another week later. So in total it makes it 6 weeks after the diagnosis. I'm sure they mean well and they say it's safe ti wait. At the same time they cannot predict tumor behaviour for sure. And I'm nervous of such a long wait. Another option is to go into surgery directly with different surgeo and no genetics results but then I'm facing a second surgery later on if the gene turns out to be in my system. I have no idea about the Her2 yet either. So it's all very distrubing, the uncertainty, the wait, the lack of info and at the same time knowing that the cancer **bleep** is in me... 😞

xxx

Julia

[Carmen42]

The more the merrier 😉

[Matty2]

No but can I come with you - only small, don't take up a lot of room 

[Carmen42]

Hi Jets and Julia,
Thanks for your replies 🙂

Yes, extremely worrying that they got it wrong in the first place, I can't help but wonder if there are others that could be benefiting from Herceptin but have been mis-diagnosed. And yes I am glad that oncotype test flagged this, just gutted as was kind of hoping to get on with life a bit sooner!
The test takes 2 weeks to come back but mine was delayed due to Xmas etc and then they ran extra tests - probably to check the HER2, so mine took longer. I hope you can get the test because it's definitely worth it. Although I had put a huge amount of faith in the result coming back low, so was very disappointed when it came back high. Incidentally if the lab had originally tested me as HER2+ then I wouldn't have been a candidate for the oncotype and I believe chemo would have been a certainty!

Julia - why do they keep delaying your surgery?

Carmen xx

ps Maldives sounds good, any offers for childminding? 😉

[sentangelo]

Hi Carmen, wow, what the news. I think you have every right to be super upset and angry, and having any other emotions for that matter. I would at least, I know. I'm all sitting with super little information even with my surgery being postponed and postponed all the time. I think tomorrow will already be better for you, and the next day much better. But imagine!  After the 18 month you're free!! You're healthy! You have all your life ahead of you! I'd go to Maldives for a couple a weeks a least to celebrate if I were you 🙂 xxx Julia

[JETS]

Hi carmen - scary that the lab got the her2 status wrong in the first instance - we have to put so much faith in the advice of our clinical teams ... I don't know how I'd feel about this. Good job u had onco test -I'd certainly b ranting!! I've got oncology meeting tomorrow and will c what they say but I want the onco fx test as I sm going to b borderline chemo decision and every cough at the moment I'm thinkig "is that cancer?..." Hope chemo goes as ok as it can xxx

[Carmen42]

Thanks Chez and Eileen.
It does feel like I'm constantly having to adjust... but hey at least I'm escaping radiotherapy - pretty sure with my surgery going so well they won't suddenly decide to sign me up for that too! 😉

[Chez666]

Hi Eileen, I agree you are entitled to rant and its a lot to take in and then things change and the mind process has to start all over again. Take care x x x

[eileen728]

Poor old you - you have every right to feel cheesed off! Bad enough to get the first diagnosis without all the rest. Stay positive and hope the rant helped! Love Eileen xx

[Carmen42]

Hi all,

Just received confirmation that I am getting everything that they can throw at me in terms of treatment.

Diagnosed end of November with grade 2 IDC and second area of DCIS. At that point the treatment plan was mastectomy and 10 years of tamoxifen.

Mid-December and the pathology following surgery comes back as grade 3 not grade 2 so we start talking about chemotherapy. I have the oncotype-dx test and wait for results. Results come back as high risk of recurrence so chemotherapy recommended.

Late January I start chemotherapy and the oncologist tells me they are retesting my HER2 status as local labs gave negative result and oncotype-dx gave positive result. So I may also need a year of herceptin.

Today, it is confirmed that my tumour was HER2+ so now instead of the very simple surgery plus tamoxifen plan, I now have a full 18 months of treatment to get through.

Feeling a bit cheesed off right now... 

Rant over!

Carmen xx