Unacceptable wait for op

hi ladies

Appt with PS went well, said i’m suitable for either LD with reduction on other breast at a later date or DIEP. Back to see him next thur with my final decision & for pre opp.

DIEP seems to be the right choice for me but I have to admit that I’m feeling guilty about putting my body through additional trauma for sake of having 2 breasts. Not helped at all I must say by the comments from someone very near & dear to me categorically stating that she feels very strongly about it & would never consider recon if she ever found herself in my position. Then proceeded with her body confidence statements, which made me feel worse. Maybe I’m just being over sensitive.

It’s about what’s right for me, right?. It has started me thinking though - what if it fails, then I’ll have put my body through all that for nothing? What if I get recurrence in other breast & need another MX, what then? Plagued with doubts & what if’s!

I’d love to hear your experience of the DIEP opp & how your recovery is going nonsuch, would be good to know what to expect.

Take care x

Hi emma21,
Poor you, I can’t believe anyone could say things like that to you! If we thought the worst we would never do anything…why have our hair styled? It will only grow again…why go on holiday, something bad might happen.
Luckily I never encountered anyone like that.

My thinking was that if I had to have treatment, I wanted to get the most out of the whole process. Yes, I could get BC in my other side, or I might have an accident next week…but in the meantime I’ve let medical science put me as right as possible…(bit like the cracks in the wall of my ol cottage, done what I can about them, now I need a bit of luck). occasionally I think well, what if I did get BC on the other side, I can’t have another DIEP. But Im not at high risk, so why worry about something that might not happen? Its Great news that your PS has given you the go ahead…ia real cause for celebration!

NO ONE could be any more scaredy cat than me, honestly! I worried a lot about all the simple procedures, of course also about not coming thro the GA and each was a little mountain I had to climb. I was lucky I know, in that an immediate DIEP was an option, so didn’t have to face surgery twice. Then it was a matter of getting through the stages towards approval for a DIEP. Knowing how lucky I was to have this chance helped me come to terms with it a lot, as it was something I’d chosen and fought for, not been dumped with. The cosmetic results I’d seen all seemed best with the flaps, and the DIEP generally has less impact on activities as it uses no muscle. Luckily I’d been stuck with a bit of a tum that even after a diet blitz tended to stick around so it went to good use.

It’s nine weeks now and honestly, no one would know I’d had an op. I can wear a bikini but it doesn’t go with snow boots…I walk miles every day with my dog…I go out here, there and everywhere…my refilled boob is still la bit enlarged it was well filled! but I’m talking one cup size now and hoping it will settle more in the next six weeks till I go for my finishing touches consultation. Don’t like the idea of surgery but evidently the flap bit has no feeling anyway, so I’m going to go for a nipple construction. Not decided yet on anything else.

Pm me with your email and I’m happy to send you more info?
Have a lovely Sunday
Nonsuch xx

Hi nonsuch

That’s a great way of looking at it, I too feel very lucky (erring on the side of caution until I get sentinel node results), but reading what other ladies are going through, I do feel fortunate at this stage.

It’s superb that you feel so good after 9 weeks & thanks so much for offering to send more info as I have no doubt I’ll find it invaluable, i’ll ping you my email over.

I hope you don’t have too much snow & you have a great walk today with your lovely dog x

Hi Ladies,

Emma I’m glad your appt with PS went well and that you have a choice of possible opps. I know exactly what you mean with the indecision as I’ve been going through exactly the same thing myself and my op is due in 11 days!! I’ve wondered what would happen about a recurrence in the other breast especially as this is my second bc (and no family history, just pure bad luck). I’ve worried about a recurrence in the chest wall after mx and recon, I’ve worried about it failing etc etc but for each of these worries the alternative of having no recon really does not appeal to me either. Its so difficult isn’t it?

I met up with a friend of a friend last week who had gone through the same thing 4yrs ago and she said that a week before her op her PS said he didn’t think that mentally she was ready for the op and that they should postpone it. This really focused her and made her realise that she definately wanted the recon so it went ahead and she was and is delighted that she had it done.

Nonsuch - you talk such sense and have certainly made me feel more positive about my op. Also I think the bikini and snow boots is a definate no no!!

Lemoncake
x

Hi lemoncake

That’s great you only have 11 more days to go, I’m sure it’ll fly by in no time. Are you feeling more apprehensive the nearer it gets? I still have 4 - 5 weeks to go, which feels like a long way off.

I totally agree with you & no recon doesn’t appeal to me either. I keep reminding myself the advice the BCN gave me about not making any knee jerk decisions as I will probably feel very different 2/3/5 years down the line. Your friend of a friend seems to be testament to this too!

The sound advice from nonsuch set my constantly over thinking mind on a different & more positive train of thought that really helped, I hope it does for you too :slight_smile:

Do you have any more appts before you go into hosp? Or is it just a straight wait from here? These lovely ladies on the forum all certainly know what they’re talking about when they said the waiting is the worst part!

Take care x

Hi Emma21

Too right that the waiting is the worst part, I have found it so difficult. Yes I do have more appointments before the op, I’ve got to see the PS again this Thurs so that he can go through things again and then the breastcare nurse and a pre-op appt next week.

It sounds as if you are feeling more positive about going for the op and I agree that the comments Nonsuch made helped.

Lemoncake
x

Morning ladies

I too had long wait Dx was 22 November and finally had op 16 Jan. The wait for ultrasound and biopsy is ridiculous. Had a change in consultant which put things back a few weeks as new one insisted on MRI and that found morecsuspicious lumps so then another wait for biopsies and CT scan. Still shouldn’t grumble as nodes are clear and op gave me a nice new pert boob ( although having lop sided boobs is a different experience I’ll have to try to be patient for the end of the road before I get second mammoplasty done).

So now on Tamoxifen and waiting again for oncology appointment.

Hope all goes well for you I know what you all mean the waiting is the worse as at times an over active imagination is a dangerous tool!

Thinking if you all and hoping timevflies and results good for all.

Hi Carolyn1709,

It does seem that 2 months is about the average wait for an immediate reconstruction. What was your dx and which recon did you have?

I took Tamoxifen for 5/6 yrs last time I had bc and had no problems with it. How long will you have it for?

Take Care
Lemoncake
x

Hello Lemoncake

I ad a therapeutic mammoplasty on the left where they successfully removed 2.9cm lump and made me smaller on that side. Just means I’ll ave to have second op when all this gas finished. I’m also raking Tamoxifen now which apart from stopping my periods ( which can’t be a bad thing ) hasn’t seemed to ave given me any other problems.

Did have all from BCN today who says they are trying to get me in oncology clinic next week son ill know more then.

hi lemoncake

Best of luck for your opp this week, I can’t imagine how you’ll be feeling with only 3 days to go, so just wanted you to know I’m thinking of you & sending lots of love your way x

hi Carolyn1709

That’s great news your nodes were clear & you’re happy with the opp results. Best of luck at the oncology clinic this week, hope it goes well.

Take care

Hi Emma,

Thanks for that. It will soon be your turn.

Take Care
Lemoncake
x

Hi Ladies

Just a quick up update on this thread. I had my mx/recon - 12hr op on 16/2. At the results clinic last week they told me that although they had been sure my 3cm was all DCIS there was actually 4mm that had gone invasive!!! It does make me wonder if this is due to the delay in surgery - I will never know.

I hope you are all ok.

Take Care
Lemoncake
x

I had 3 months in between diagnosis and surgery, due to being bilateral and lobular. Because of this I was sent for an MRI which spotted an additional suspicious area and I wanted it biopsied, which could only be done in another health board. Turned out not to be BC. I also had an SNB in between.

I also did a lot of reading and found out there is a difference between a ‘guideline’ (e.g. NICE, SIGN) and a ‘target’ which is usually set by the government and imposed on health boards. Health boards strive to meet targets more than they would a guideline. I found out this was the case in Scotland, there is a target for the length of time between diagnosis and first treatment, but only a guideline for time between first treatment and any subsequent treatment, in my case radiotherapy.

It is very concerning when you have such a long wait, wondering what’s going on in the meantime. I did write to the doctors involved and was moved up 2 weeks, but the wait was still significant for both surgery and rads.

I think there will usually be a longer wait for immediate reconstruction as that involves more planning.

Best of luck.

S
X

S
X

hi Lemoncake

I’m so sorry to hear your DCIS has gone invasive, I truly hope it’s not down to your lengthy wait for surgery. As you know this is a concern of mine too.

Do you know what follow up treatment you need to have yet?

take care x

Hi Emma

I have just read your PM, I will reply in a minute. I’ve got to have Zoladex injections into the now non-existent fat in my stomach every 4wks for a few yrs as I am pre-menopausal and take Arimidex tablets daily for 5yrs - the BCN described them as Tamoxifen’s big brother (I had that last time 13yrs ago).

When do you get your results?

Take care
x

Hi Lemoncake

My results came back as high grade DCIS in 2 areas, 4mm & 11mm. However, it had not yet grown outside of the ducts & the 3 nodes taken in SNB were unaffected, so no further treatment required for me. As you know I too was concerned with the lengthy wait for the opp, so I was greatly relieved with that news.

Take care x