I feel like I am being an absolute pain to my BC Team!

Hi ladies,

 

Some of you may know where I’m at so far and others may not so will do my best not to repeat:

 

I was diagnosed in Aug. 2018 with IDC with lobular features, Grade 2, Her2 - and ER +. Started off on NHS, moved to private (under same consultant). Haven’t had surgery yet nor have I started hormone treatment yet. Had 1st consultation with breast surgeon on 28th Sept, met Oncologist on 2nd, and Plastic Surgeon on 3rd. I have a lot of faith and liked both surgeons. Mixed feelings about oncologist. They have agreed to oncotype my original biopsy sample to check whether I am likely to need chemo-they also want me to start on Letrozole. I am happy to do so *but* I made it clear that until I hear my sample is in the US lab’s hands, I won’t be starting Letrozole because if for some reason that sample goes amiss or whatever and I’ve started Letrozole, they won’t be able to take a sample at surgery cause the Letrozole would nil and void the test.

 

So here I am nearly 2 months after diagnosis and no treatment. Surgery date is set for Nov. I was given the option of 16th Oct 2 days ago but it feels too soon for many reasons: I would like to fly home for a few days to see my mum (who can’t be with me at surgery due to her own health problems-she can’t walk). My father will be flying to London to be with me and he needs time to arange flights (from abroad). I also need to arrange home care which brings me onto another concern: the hospital I will be having surgery at are adamant that I see *them* for changing dressings and wounds post-op. They are a 45 mins. cab ride away. From what other ladies have descrbied after a DIEP surgery, I will *not* be fit to sit in a car for 45 mins. 4-5 days after I’ve come home. (hospital stay will be 5-7 days). Though my surgeon said (when I asked)-when you are discharged you will be able to do all of the basic living tasks on your own. I asked about opening/closing my windows (they are heavy and are the tilted ones)-she thought I’d be fine. I’ve heard I’ll need to put on and take off support socks daily? I can’t do this for myself (only having one boob removed and reconstructed) but the tummy wounds/stiches will surely prevent me from bending, etc. 

 

I feel like my surgeon is under estimating how much help I’ll need and overestimating how well I’ll be able to manage on my own. I’ve been in tears *more* since all of these consultations and conversations with my BC nurse than I was when I was diagnosed. I took the diagnosis well-maybe in denial and it’s all coming out now that the time is looming for surgery, but it just feels the surgeons are only concerned with the op going well and not that bothered about what happens once I get home. 

 

Back to the sample and the oncotype test: I do feel like I may be micromanaging (and joked with my BC nurse that I do this and she didn’t seem to mind)-she was the one who arranged for the screening lab to send over the biopsy sample to their lab (treatment hospital lab) and over the last 2 days she kept assuring me that she will be notified by their lab when the sample is received. I decided to log onto Royal Mail’s tracking service (I had the tracking #-she forwarded it to me in an email) and lo and behold they received it on 2nd Oct. Either she hasn’t been notified yet by her lab or she has but is so darn busy with other patients (understandably) that she hasn’t got around to letting me know. Timing is critical because as soon as I know that my sample is safely in the Oncotype test’s lab in the US I can start on Letrozole and even my surgeon said “once you start Letroxole I am happy for you to defer surgery”-in other words there is no hurry.

 

My cancer is around 52mm-so relative to the size of my breast I am recommended mastecomy as opposed to lumpectomy *but* I did email my surgeon this AM (I hope she isn’t fed up with me-I’ve also sent her secretary a couple this week *and* have phoned her numerous times re-other things) to ask her if I take Letrozole for 18 months or so is there the chance my cancer may shrink significantly enough that I’ll be able to have lumpectomy? To be honest, I know that with lumpectomy, radiation would be likely and with mastectomy they said I may be able to get away with no radiotherapy. So I don’t even know why I’m asking the Q! But I think I am so petrified of the recovery from the DIEP…and the time off work…and the more time when they do surgery #2 (apparently a second surgery is usually required to fine tune and perfect the reconstructed boob and tummy). I can’t be the only self-employed person worried about time off? My work is not of the nature where I can dip in and out-work for a week then off for a week. I’m a psychotherapist (would you believe)??? :slight_smile: and I need to be at work consistently or not. Patients need weekly sessions (most do anyways, certainly at the start). I’m essentially not going to be earning a living for up to a year? I will probably defer the second surgery just so that I can work for 6 months or so after I recover from op #1

 

But good god…this feels like a living nightmare-because of the impact it will have on my life.

 

Which brings me to my *non* compassionate oncologist; when I asked her about SE (side effects) of Letrozole (quoting that I’ve read on here that some women’s joint pains are so severe they prevent them from getting good sleep) and that I can’t afford *not* to sleep well given the nature of my job…she dismissed the fact that joint pains would cause poor sleep and said instead they must be referring to hot flashes. She also said (in othe words) that you will have to put up with some unpleasant SE, as if to say to me “this is cancer afterall”. She also dismissed the fact that certain brands of Letrozole are better than others, wherea on here some women claim that they fare better with one over another. She said this would be placebo (or “nobebo” she called it). She said all of the “active” ingredients are the same in all brands. It felt like she was dismissing any account of any woman’s experience, in favour of what her “data”/research tells her. I’m all in favour of being academic and research focused but surely a woman’s subjective experience matters and should be validated. 

 

When a patient tells me they are experiencing nasty or unpleasant SE from an antidepressant-I don’t say suck it and see (whatever the expression is). I talk to them about the different SE’s for the different meds and ask them which they think they’ll tolerate more (I don’t prescribe but it’s part of my job to discuss SE’s with them and help them make an informed decision). With Letrozole it’s more like “you’ve got to take this and that’s all there is to it”. When I said to her “I am concerned about not being able to work” due to the SE she said “we want you to work, but we want to prolong your life”. A very sensible lady on here told me that the ocolgoists are probably so used to losing many of their patients that they take this very hard approach. However, I don’t think a one size fits all approach is helpful. Yes, cancer is cancer, but Grade 1 is not Grade 2, and Grade 2 is not Grade 3, etc. and same with stages. 

 

I’m so sorry for venting like this but I feel so frustrated right now, and a bit out on a limb-haven’t started hormone therapy, waiting for US to receive sample (which BC nurse seems to not know that her lab received the sample), unsure about home help based on surgeon’s belief I will need very little.

 

I could scream right now. 

xxxx 

Hi Marla13,

 

We ‘know’ eachother rom other threads, and we seemed to be on the same path at one time - but your’s has now gone in a different direction ot me.

 

I’ve had to google about Letrozole and the Oncotype test - as I wasn’t sure what they were all about - so I’m a bit more clued up but its all very ‘complicated’.

 

I’ll probably not be much help but, as you know, I’ve now had my surgery so can tell you how I’m coping.

 

I had immediate reconstruction using an inflator. My size was 36D and my surgeon said they could get the inflator to a ‘D’ cup so I didn’t have to have 2 surgery sites - I take it this in not an option for you?

 

I had home visits from either the district nurse or the breast care nurse every day up until yesterday, who checked the wound and changed the dressing and checked on my drain- the breast care nurse came yesterday and removed the drain and the dressing - so I dont need any more visits and was able to have a lovely long shower and sleep slightly better last night now the drain has gone. Are you not able to get this sort of help in London? (its bad if you can’t?)

 

I’m not on my own, so do have help around the house. But i’ve been out for long walks nearly every day since being discharged. I’ve been quite surprised with what I can do - before the surgery I was preparing myself for being out of action for ages, practising brushing my teeth with my left hand and I got my hair cut as I thought I wouldn’t be able to manage getting knots out of it - but I’m able to do most things and have full use of my right arm. I’m being careful, though. I wouldn’t advise opening or closing heavy windows, though. You might ‘struggle’ more with the 2 surgery sites.

 

I can understand your frustration - this horrible situation that we find ourselves in is bad enough without having all the delays you seem to be going through. Sorry I can’t be more help

 

I get my pathology results next Wednesday and depending on whats said I might enquire about the Oncotype test myself now I know about it.

 

Keep your chin up - it will get sorted for you I’m sure.

 

Love

Helen?

 

 

 

 

Hi Marla13

 

I’ve been debating with myself whether to post this or not.  I don’t want it to come across in the wrong way as if I am bragging but I really want to give you some encouragement when your confidence is in short supply and anxiety levels rising.

 

A bit about me.  I had my reconstruction at the end of last October.  It was supposed to be a DIEP but turned into a free TRAM so I lost a bit of muscle.  Some would say, I drew the short straw there.  I came out of hospital on the 5th day post op and I too had to go back to hospital on the 9th day for post-op checks.  My sister drove me there and then straight to stay with my Mother.  A total journey of about 2.5 hours.  On the 12th day post-op I returned home on the train by myself which was another 2 hours travelling.  Both journeys were manageable.

 

I also live alone and work for myself.  Admittedly, the latter is mainly a desk job and can be done from home if I do not have meetings to attend.  I was back at work from the comfort of my sofa on day 7 post-op.  My stomach may have been carved up but my brain hadn’t been addled and it saved me from too much day time TV ?.

 

I wore my surgical stockings for three weeks and I found that putting them on/off wasn’t a problem.  For me, having your knees flexed was one of the most comfortable positions anyway during recovery.  I wore my Spanx knickers for 10 weeks rotating about 5 pairs.  I don’t think you have to wear them for this long but I don’t have any tummy bulges now.  Coincidence?  Possibly.  My initial swelling resolved over that time period.

 

Day to day activities at home were manageable using some common sense by the end of the second week and I went skiing 16 weeks after my op.  That was my ‘gold medal’!

 

I had my stage 2 op at the beginning of August.  It was done as a day case.  I was discharged with paracetamol and dihydrocodeine.  The latter are untouched and I took precisely 2 paracetamol.  The same evening, I went out to the pub with my friends.  It was a good job that they couldn’t see the impact of my op under my clothes.  I was very black and blue.  Your surgeon is unlikely to do stage 2 until at least 6 months have passed in any case in order to allow things to settle and to see what fine-tuning is required.  Some people don’t need anything.

 

I can’t help you I am afraid with your other points.  What I would like to say though is this.  Sometimes I think a forum like this may be a bit one sided because the people who need help are more likely to post.  What it may not accurately reflect are those people like me who have done well and have sailed through more or less problem free.  I really hope you fall into my category.  Please ask if I can help any more.

 

Ezzie.  ?