Hello! Diagnosed in October and already lumpectomy

Hi, hope you are managing this situation as best you can, irs not an easy place to find yourself but this site is the best place for information. 

So i was diagnosed with breast cancer in May last year, found a lump, gp, mammogram and was told within the hour. Initially everything happened quickly, lots of appointments sometimes two a day but in a way it was best to just keep moving. 

I will be honest im not the best person for abreviations, i think it was hormone receptive as im on Tamoxifen now....i know that sounds hopeless!!! In the beginning we wanted to know everything and find out as much as possible and it is good to have some kind of expectation, but i would say plans do change. In my first appointment i was told lumpectomy and radiotherapy, i felt i had been lucky with this treatment plan.

First op July, lumpectomy and lymph nodes, needed a second excision in august as margins werent clear, then had onco type test to determine if chemo was needed. This hadnt been mentioned before, again cant remember exact numbers but my score was in the 40s, with my age, (46) the cancer type and the test score chemo was then recommended. As i was getting my head  around that was told still hadnt got clear margin.

I opted to start chemo as i didnt want to delay things further, started in oct finished end of jan then had 3rd op, unfortunately this was again unsuccessful and had mastectomy in april followed by radiotherapy in july. 

Its understandable to wait to plan and i did as much as i could but my biggest advice to anyone would be to expect changes and often whatyou are told initially is best case scenario.

Maybe i was just unlucky and other peoples treatment seems to be more straightforward and i think they dont overload you with information initially as there is so much to take in. Once i knew something was happening, i looked into and found out what to expect so that i could prepare mentally, emotionally and practically.

I would also say this site is the best source of information, often treatment plans, communication and experiences do differ and i guess thats down o different hospital trusts and their policies but essentially were all doing the same......getting better.

Hope this helps and sorry im not very specific but now im out the other side i dint feel the abreviations mattered that much. Take care xxxx

Sorry to hear about your diagnosis and also to agree with the previous comments - for me in this journey plans changed and evolved as things progressed.  I’m a planner rather than a full on control freak and it’s been so hard not to be able to plan as dates change and new appointments kick in.  

Everyone’s journey is very different and treatment plans are highly individualised so you will need to wait for your consultant to give you a plan.  Bear in mind that you may not be able to complete the original plan and have to reassess - this can happen with chemo and side effects.  So for those of us who like a plan the plan is to be flexible - not easy.  I’ve found one way through is to make flexiplans after doing some work with a counsellor.  For example celebrating my sons birthday - I might book a B&B closer to the time and take him out and order a cake from a local bakery, or if I’m less well he can come home and we’ll go to his favourite place to eat, or if we can’t do that we’ll celebrate online together and I’ll get a cake and treats delivered and ask my brother to take him out.  But it will be special - I just don’t know in what way.

I’m usually the one who thinks everything through, creates the plan and makes things happen at work, socially and at home.  So bring in this environment of shifting sand is uncomfortable and the plan is to adjust, be flexible and acknowledge I’m outside my comfort zone and to be kind to me. 

if you’re working it’s hard - I just told them I had no control over appointments and scans and had to make all of them so I could not be reliable in this season but I’d do my best to make sure it was easy for others to cover until I needed to go in sick leave.

I don’t know if this helps - I wish you well

Hi. Yest its a whirlwind of appointments once you are diagnosed. I had five appts pending at one time before my op. It is really hard to plan too far ahead but I know what you mean, wanting to know what’s ahead. The oncologist will give you more info. I have to say that since being diagnosed on 15 August with stage 1 grade 2 IDC, the treatment has been so good. Once you are in the system everything goes like clockwork, well for me it has. Started five days of radiotherapy yesterday so coming to the end of treatment apart from five years on Anestrozole. I feel very lucky that my cancer was fairly easy to treat but my heart goes out to those who have to cope with chemo. Emotionally it is a roller coaster. Good luck.

Hi  All100,

So sorry  to hear your  news. Tough times. 
The first thing to say is that everyones experience is different so wade carefully…….. I was stressing out when reading the experiences and finally decided that I would read everything for knowledge but put it all to the back of my mind unless I found something which resonated with my experience. 

I went to my GP in early January this year and was refered on the “ fasttrack” programne. This was pretty much ignored by my hospital and  It took awhile for all my tests to be completed ( >10   Weeks). 
however  once i was diagnosed in April this year and  in the system , my treatment has been very good. 

Early stage 1 IDC , grade 2  ER+

I  had surgery ( Lumpectomy and 2 nodes out) at the end of April this year and I  was clear with my surgeon that if she had any doubt about margins then she should take more away. I would rather have a bigger dent than face more surgery etc. The Margins were good and Nodes were clear ! I started Anastrozole at the End of May and had 5 sessions of Radiotherapy mid July. 
I struggled with Anastrazole side effects ( for 4 months ) but I persevered and am now feeling relatively normal again.

So far so good ! 

I agree in the  beginning its overwhelming, dealing with  a positive diagnosis , all the appointments and the pure shock and impact on daily life. But it does get easier, I promise….

I found mentally that once I had surgery and knew margins were clear, nodes clear and I had a plan for treatment I was in a much better frame of mind.

I wish  you well on your journey , try to take one day at a time 

Thanks for all the great info, wow you’ve been through a lot of ops - good to hear you are out the other side of that part and hope you’re doing ok after all that?

Good to hear this site is the place for the best info, I’m certainly finding that so far.

Yes I guess different trusts will have different communication rules, mine so far seems to be that plans are made before they’ve told me what they are.

I guess at this stage I just don’t feel I’m very involved in making decisions or finding out what options I have. But also appreciate there’s a lot more to come, it’s early stages in the journey. Maybe I just need to find some patience, ha! 

You and me both :) I’m a planner and yes, the one who makes the plans for everything. Completely relate to your plans for birthdays with your son and that is such a good idea to make flexiplans so there are options whatever stage things are at.

I’m going to try and apply that flexiplan idea to Christmas. We live on a Scottish island so hospital usually means overnight stays and if radiotherapy is needed/next that might mean staying away from home for a week at a time, so if that’s a possibility in the run up to Christmas then I want to be prepared and know I’ve got stuff sorted at home. Just extra factors that mean I do need some sort of plan, it’s not all my wanting to keep in control, haha. 

I’m going to try and get organised around the things I can do now, so at least that’s one less thing to think about if/when I know what the next stage of treatment is. 

Wishing you well too, thanks so much for the tips on planning and being flexible where you can, it really does help. Not sure what stage you’re at but hope you’re doing ok through treatment etc. x 

Thank you, and good to hear it’s gone like clockwork for you once you got to the oncologist stage. I’m hoping for the same but also beginning to appreciate more that my wanting to plan is not helping me, so I’m going to have to give in or work around that!

Really good to hear you’re almost through radiotherapy already, that’s brilliant to hear. Wishing you strength for the recovery and coming out the other side :) 

Ah thanks, yeah a lot of our experiences sound similar so far. Good to know that once you were properly in it things went better, especially after such a long worrying wait in the beginning. 

I agree, info is good where it’s relevant to your situation but it’s just scary if you try to take everything on board!

Still waiting on results after lumpectomy and 2 nodes out but completely agree with you that things got easier after diagnosis. So am hoping I will also be like you and find another level of ease once I know what comes next in the treatment plan. 

They put me on Letrozole before my surgery so I’ve been on that for a month+. Side effects so far haven’t been too bad, mostly it’s the hot flushes at bedtime but I’m coping. Was gutted I had to come off my HRT patches though! 

I said the same to my surgeon - lop the whole thing off if you want, I’m not bothered, just get things clear so I don’t need another op!

Thanks so much for the reply and for sharing your experiences. It really helps to be here and learn from you :) x

Hi my lovely I had the same as you I had lumpectomy lymph nodes removed all clear and as it was ER+HER2 + I had to have 12 weeks paclitaxel chemotherapy,  5 days of radiotherapy, herceptin injections every 3 weeks  for a year and tamoxifen for the next 5 possible 10 years  I'm 53 I know its all a bit scary and confusing but you will get through it sending love your way xxxx