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Newly diagnosed and treatment plan keeps changing

6 REPLIES 6
LMitchell
Member

Re: Newly diagnosed and treatment plan keeps changing

Dear Dippy

Seems change is par for this course on this journey. 15 June I was in the frame of mind, small lump, cut away, a few years of meds and that is it, but as time has gone on, everything has changed. I, like you, like control and to know what is going on and have also found this change very difficult. I have found it good to write things down, review and even think about alternatives - good and bad. I have lots of time on my hands so can do that. Some people find this a really stressful coping mechanism but it works for me.

I think my team has also realised I'm a thinker and answer all my questions, but in the same breath, as I seem so well informed they seem to be being quite blase about my support, I think they think I have it all in hand, which is not the case. Point in fact, I have a second surgery this week, last one was 5 weeks ago, and they said 'oh you won't need a dressing appt, you can do that yourself yes? and if you are worried just give us a call'.... NO, I want to come in and have someone have a look, please. I have no medical experience.

I hope you find a way which works for you, and remember we are all here.

Hugs

dippy
Member

Re: Newly diagnosed and treatment plan keeps changing

Thankyou Tili,

I am going to take your advice and call one of the nurses on this site

xx

dippy
Member

Re: Newly diagnosed and treatment plan keeps changing

Thanks Julia,

I think I’ll bite the bullet and ask for a change of consultant.

Tbh it was worrying me that I had to put myself in the hands of the one who first of all told me categorically that I didn’t have cancer.

I was struggling in convincing myself to have faith in him.

sorry that you are having such problems just now and wish you a speedy and full recovery from your infection

xc

 

Jukat
Member

Re: Newly diagnosed and treatment plan keeps changing

Hi @dippy and @Cath9090 

It is such a tough and frustrating time when things are changing every minute and you feel like you don't have control or have a clear plan...but I try and keep in my head that it is a good thing, as the care I receive is tailored for me at each turn and they are planning everything according to my needs alone.

I also have invasive lobular cancer and was told I would need a mastectomy as the area was too big, 55mm and because there was another area that was suspect (second site came back negative). They also wanted to start a delayed reconstruction during the mastectomy by inserting an expander to make room in my chest. I am now 4 weeks post op from the mastectomy and SNB (also cancerous). Unfortunately about 14 days post op I developed a deep site infection and had to have the expander removed....I am still fighting the infection now, which has delayed the axillary clearance. 

What I am trying say is that things have constantly changed but that has been for the benefit of me.

I am also a health professional and cannot fault my breast care nurses and am truly sorry that you have had that experience. I was taught years ago that we can take charge of our care, where in our parents/grandparents time nothing was questioned and with that in mind I told the team that I wanted to change to another consultant. I didn't like the manner of the original consultant, I have in the past worked with many consultants who had a short, abrupt manner and I didn't want to be on the receiving end of that. It was changed, no questions asked.

I was also really shocked to go from 1 week being fine, to being recalled from my 1st screening mammogram, having biopsies and being told I have cancer....some days I still can't believe it, everything has happened so fast....and I would have thought your BN would understand that....of course you will be thinking of it!! I definitely think for your own mental health you should be able to think about this and talk about it....locking it away will do you more harm!

Always here if you need to talk ❤️

Julia x

Cath9090
Member

Re: Newly diagnosed and treatment plan keeps changing

Hi Dippy,

I had a long diagnosis period - it was really stressful and hard and things kept changing. I also had invasive lobular cancer and some LCIS. At one stage the surgeon said it could be lumpectomy or mastectomy and I found that really hard to hold in my mind. Ended up having a lumpectomy, but surgery date was delayed by all the biopsies to investigate. Then radiotherapy delayed as the tumour was bigger than previously thought and chemo was then mentioned, which had never been before. Mentally i lost it around that time. They did the oncotype test and that indicated no recommendation for chemo. I'm really grateful but the uncertainty played havoc with me emotionally. Going to appointments was (and is) horrible as i'd be worrying about what they would spring on me...

So sorry you're not getting the right support. I also work in health and find it extra difficult as think i'm hard on myself as i should know how the system works. But as i know the pressures, i'm not always good at asking for what I need. Not a supportive response to your question!!! I also felt like that and think its a common feeling. i'm now a year post lumpectomy and still feel like it. You were not being a pest and I feel angry that you felt you had to apologise. The team are there to listen and support with everything. 

I got some counselling through my local breast team which helped me process during treatment - helped to have someone who understands the challenges we go through. 

Sending hugs xx

Tili
Member

Re: Newly diagnosed and treatment plan keeps changing

Dear Dippy,

So sorry in fact sad to read this post, this is not acceptable, I unfortunately have had breast cancer twice, both time with problems, looking back wish I had asked more questions and been more aware and not so polite. Your breast cancer nurse should be supporting you, looking after you and helping you, maybe call the wonderful nurses on this site feel sure they will be able to point you in the right direction.

As a nurse yourself I bet you’re giving  100% to your patients, you deserve the same. Wishing you well, make yourself number one, a very big hug Tili 🌈🙏

 

 

 

dippy
Member

Newly diagnosed and treatment plan keeps changing

Good evening ladies. I’ve been reading posts for a few weeks now debating whether to join in - makes it a bit more real I guess.

End of May I was recalled after 1st mammogram for some inconsistencies.

had biopsies and ultrasound - week later was told I had LCIS and Not Cancer but more investigations were needed. More biopsies and MRI and now diagnosed with Invasive Lobular Cancer - strongly oestrogen receptive. Told by 1 consultant I’d get Wide excision lumpectomy and Licap mid august but I’d need to see another consultant first end of July. He was on holiday so was started on letrozole. Finally saw surgeon and he said stay on letrozole for further 2 months to try and shrink tumour (20mm) as my breast isn’t big enough to have a good result from LICAP. To go ahead with surgery just now it would be full mastectomy - WOA that’s never been mentioned before. So was told endocrine clinic end of sept then surgery 5 weeks after that then radiotherapy. Now been told no space for me at the end of sept clinic but hopefully end of October. In my head I had surgery and radiotherapy all done by Xmas and now my head is so messed up. What makes it more frustrating is I’m a nurse and hate being out of control over my own health. I was also told by BC nurse when I asked how I could go from 1 week to not having cancer to the following week being told I did. Her reply was to stop rumenating and I apologised if I was being a pest.

sorry for the long ramble but has anyone else had this same confusion