12-11-2018 08:12 PM
Just a quick note from me to say hello - I always keep an eye on this thread.
Helena - sounds like you are making good progress. Well done you.
i have spent today making a LOT of chutney. No prizes for guessing what my stocking filler gifts will be this year. Such a difference to this time last year - I am very grateful and making the very most of it.
Love to all.
12-11-2018 03:51 PM
10-11-2018 07:52 PM
So pleased for you Helena. You've come on leaps and bounds. Well done you.
I have to speak to my Oncologists Secretary on Monday anyway so will mention it to her.
Thanks for your advice.
10-11-2018 07:07 PM
In view of Alibobs experience I think I would ring sooner rather than later.
Doing even better in that my scar has finally completely healed so no more nurse apts and I can finally have a shower now instead of the top and tailing I have had to do for the past three and a half weeks xxx
10-11-2018 07:04 PM
Oh for god sake the sheer incompetence and it is totally unacceptable that you have to follow this up yourself, thank goodness you checked. Well make sure you insist on being seen asap and that they do not try to fob you off that there is nothing availabe, it is their mistake.
10-11-2018 03:19 PM
Alibobs and Juliewulie,
I couldn't agree with you more. Whenever I encounter anyone in a service/care industry, the first question I ask myself is "would I have you work for *me"? Nine times out of ten the answer is no.
I, too, pride myself on my five star service to my clients....responding to enquiries promptly, spending time with them (they pay for 50 minutes-I see them for 50 or longer)-I don't cut sessions short which is what I've experienced in the BC arena.
As soon as you walk through the "private" sector door in BC care, it seems they want to get as many patients through the door as possible; I never know how long my appointments are supposed to me but by god I do know how much my insurance co. is being charged. And I also know that my premiums will sky rocket next year.
I pride myself on working in the private sector and seeing *fewer* clients than I did on the NHS-this allows me to provide a quality service and maintain a work-life balance. As long as I earn enough to pay my bills I'm happy. I never set out to save the world or own a Ferrari.
I've seen things from both sides now that I am a patient in the private sector and I must say-I do things so differently and I'm very proud of how I run my business. Good god. It's called Ethics.
10-11-2018 03:12 PM
Hi Mai-thanks for the link (I'm entertaining my father this week so may only have a chance to read once he's left). It sounds like we have very similar presentations (I remembered this from when I first read one of your messages). As my consultant keeps saying, lobular cancers are "interesting". Mine is ductal but it appears as lobular...here there and everywhere which is why we won't know what surgery I will need until we know *how* it has shrunk. It *will* shrink, but we don't know *how*.
My Onctotype Dx test score was 1 so chemo was never going to be part of my treatment plan; (a score of 25 and over suggests chemo and anything under suggests the risks might outweigh the benefits). My consultant assured me that a score of 1 is a good thing, so I'm not too worried about that. I'm aware I am simplifying things but it is my understanding that Letrozole does to Estrogen + tumours, what chemo does to non-Estrogen + tumours so I'm really not worried at all. We'll know more in a few months, if not a years' time. It does take time to shrink the cancer. I'm just trying to get my life back on track-a lot has been "undone" and I now need to rewind the clock to pre-August. Right now, it's a "wait and see" and "do nothing other than take Letrozole" approach so I'm very happy with the plan for now.
10-11-2018 12:45 PM
10-11-2018 11:59 AM
Marla, that sound like a good plan and you seem much less anxious now. Hormone positive tumours don't have a high response rate to chemo, mine only had a partial response after 8 rounds so I think trying the Letrozole could be a revolutionary move for hormone positive people. Mine was scattered (diffuse) too and was primarily ductal with some lobular mixed so I had grown quite a magnificent masterpiece with an equal and opposing medical challenge. We all grow a different masterpiece and the job of decoding what we have created isn't as clear cut as we'd like to think. However, none of us intended to grow a tumour and I agree that the upheaval it causes for us is quite disturbing and we want everyone to understand that we have lost control of the fundamentals in our lives. We're told we're ill and yet, suddenly we now have to work even harder to stay alive and not sink financially. Like you, I have never been a person to take of much sick leave, in fact, I've never really suffered ill health until *this*. I hope your Letrozole works well for you. I still had to have the dreaded mx and I've now started consulation discussions on recon. Keep us posted on how you're doing. In the meantime, this is a lovely read: https://anticancerclub.com/inspiring-stories-from-cancer-survivors/dear-every-cancer-patient-ever-to... xx
10-11-2018 11:31 AM
10-11-2018 08:10 AM
Yes Shingles is not leasant especially with the meds as they have SE's too which are unpleasant.
I've met with Occ Health and they say I'm not fit for work between one thing and another so am considering leaving-bt it's not that easy.
last tme I spoke to my BCN was before Xmas last year and she said if I haven't heard about my mammogram by this Xmas to et her know so think I'll give it a coupe of weeks and see if I hear anything.
Glad to hear you're feeling better afyer your op.
10-11-2018 06:28 AM
I'm really pleased to hear you are doing well. Yes, it is absolutely normal to get upset sometimes-the realization of the enormity of what you've been through...it hits us all at different stages of this process. But all in all you sound really well.
I have actually decided (with the full support of my surgeon) to defer surgery and give Letrozole a chance to shrink my cancer (I'd love to say "tumour" but with lobular cancers it's not so much a tumour but "here, there & everywhere" from what I understand. If Letrozole shrinks it in the way we want it to, I may be able to be spared a mastectomy but to be honest, I do think it is unlikely given the nature of my cancer. Having said that, I am all for giving it a go if only to have more time to prepare for the surgery and have ample time off work, etc.
There is no hurry whatsoever and my consultant assured me that I am safe and not putting myself in any risk by deferring surgery. Apparently Letrozole first stops the cancer from growing and then shrinks it. I've only been on it a month so we won't know anything for at least another two months but I am prepared to wait and just have it monitored via MRI's. I am in a very good place mentally re-my decision. I've now just got to get my life back on track because this has completely derailed me. I stopped work quite suddenly (as suddenly as one can as a psychotherapist) in order to attend my appointments (one of my team gave me a telling off and a lecture when I was unable to take the first appointment offered to me-I already had my own patient booked in) so I stopped working in order to make myself available 24/7 for my appointments.
That has probably been the most upsetting part of all of this-the fact that once you have a BC diagnosis...you are no longer treated as a human being with a career (I don't have kids) but a cancer patient (who doesn't have a life to live)-this has been *my* experience anyways. I don't usually operate this way, I don't take long periods of time off work so this has really been upsetting in so many ways.
I am not rushing to get back to work full-time-I will return full-time in January. But at least I can feel confident that the next time they say "surgery" I will not kick in to "what date" mode, but rather *I* will be in control and *I* will be in charge.
The one thing I wish cancer teams understood is this: once you have a diagnosis of cancer, you are no longer in control of your health..."something" is happening to your body that can make you feel out of control, i.e., "I can't stop this from happening to me". So it is vitally important to help patients retain as much control in other parts of their life, but some teams do not see it that way. It's as if you have to surrender and be at their beck and call. The other thing I've learned about this process (again, just in my experience alone) is that we are all lumped into one group "BC patients". Yet Grade 1 is different to Grade 3 and the decisions one makes at Grade 1 are different to those made at Grade 3 or even Grade 2, and I wish it had been made more clear to me from the start that surgery is not urgent. I might not have disrupted my life in the way that I have (work is a bit part of my life and the nature of my job adds another layer to it)-I have lots of clients and lots of explaining to do re-my time off. I don't work with machines, I work with human beings. And I care about *them*.
So, for me, the disruption to my life over the last 3 months (especially in light of the fact that I am now not having surgery)-is something I am not happy about, and the fact that I felt that one member of my team in particular had no compassion or understanding of the fact that I am still working and therefore can't always make the 1st appointment on offer....over and above the cancer diagnosis, hands down-these two aspects have been more upsetting for me.
All that said, I am doing well, given I do still have the cancer "in" me. This, for some reason, does not bother me. Knowing that the Letrozole is (hopefully) doing it's thing is enough for me to feel like I am in treatment, albeit it's hormone therapy and not surgery. Interestingly, my surgeon told me that for my type of cancer, the hormone therapy is more important than the surgery in "saving" me, i.e., surgery does not stop the cancer from growing; the hormone therapy does.
I'll of course update on one of the threads when I have any news. For now, I'm just trying to get my life back on track.
09-11-2018 09:09 PM
Hi Marla, I'm doing really well thanks. I still get upset sometimes but that's to be expected I suppose given the lifechanging experience. Where are you at now with your treatment, I saw you mentioned something about hormone therapy first on the diagnosed thread. You are always welcome on this thread if you want to ask any questions or just have a chat. I bounced around all over the place in the early days. I still move around a bit! xxx
09-11-2018 09:29 AM
Oh mate sorry to hear that you are struggling and having shingles to boot, that is not good, this is the trouble when our immune systems are compromised as a result of the treatment we have had, I really hope that it improves quickly for you.
I would suggest the same as I have with Alibobs, give your breast clinic a call and ask when your 1st year mammo is booked for xx
It is hard to go back to work after such a long time, but hopefully you will be on a phased return to work, has your employer arranged an occupational health referral for you so that they can ensure that they are doing everything they need to in relation to your health and wellbeing for returning.
09-11-2018 09:25 AM
Oh darling I am only just catching up on your post. I am so sorry and angry that you have had to put up with such ignorant and inappropriate behaviour from that person but glad to hear that your manager witnessed it and has been able to do something about it. Please please do not let them affect you they are simply not worth your energy darling.
I would agree the anniversary is always a difficult one. I would suggest that you ring your breast clinic and ask when you are to have your mammogram so that you have the comfort it is in place, and just in case they have missed you. My hospitals policy was to do the first one 18 months post surgery and they sent the apt out 4 weeks before that date.
Thank you for your lovely thoughts, I am doing well and today I am wearing my normal clothes instead of the baggy pants and tops of the last 4 weeks. Some bonus from it all is that I have lost 6lb in weight, crickey I might have to buy new clothes at this rate
Sending you loads of love and hugs
08-11-2018 09:50 PM
07-11-2018 09:06 PM