Radiotherapy after AUTOLOGOUS reconstruction anyone??

[Nolton9]

Thx you! Another looog delay in my reply.. If you can, please, let me know how you go on post RT? The first time I came on the forums (suggested by the last hospital of all places) the posts were pretty scary re long term side effects etc..so I'd like sone good news I think 🙂 think you have a great positive attitude re it all btw...I'm just in total and utter unceasing fury mode for now! at how on earth so many parts of my treatment have been messed up and that essentially I'm clearing up with my body and health for them! I'm sure that stage will pass in the meantime I'm hanging in there and seem v productive in the office!!!!

[geeG]

Hi Noltan9 - I was born and grew up in Woking - so feel great sympathy for your treatment and travel demands - hope you find it works out ok - much too soon yet for me to know if rads have affected my new boob - much to give thanks for - especially as side effects of chemo decrease - as we get through this it seems vitally important to me to look forward and appreciate each day, each friend and Loved One, each breath of fresh air and shaft of sunshine - Life is a precious, previous thing.
Hugs x

[Nolton9]

Hi geeG,

Pleased to hear you are finished, nearly, with this elment. Hope it's been OK-ish? Did you do 3 weeks or 4.. I can't imagine how on earth I'm going to do the daily commute for it (we're based Surrey/south London here) and I work and have kiddies... bad enough with 3 different schools and work on the best of days.. I may just get down to HR airport and bolt -  I am so over it all now especially as this element for me after the my earlier mastectomy for DCIS was never in-plan originally - 

Have you had any shrinkage or shape change or any side effects?? I know that is usually a bit further down the line, IF , it happens? I hate all the waffle with hospitals varies for patient to patient etc etc,,,actually I just hate hospitals full-stop....

off to the gym to shke it out....!!

[lexilou3]

Well done geeG , hope you are feeling ok as your radiotherapy ends x x

[geeG]

Hi Noltan9 - my core biopsy at initial diagnosis indicated an invasive ductal cancer. Treatment before surgery was not considered to offer any benefit, and because it was right behind the nipple and I am/was not particularly large in the breast department, the only option was full mastectomy - but I was offered immediate reconstruction. I jumped at the chance … not realising how long this would take to arrange… (first realised breast things amiss 1 June 2014… saw GP 4 June … diagnosed 25 June … both oestrogen and progesterone sensitive … operation 3 September…).
SNB between diagnosis and mastectomy sampled just one node as surgeon was convinced there was nothing there … but found macromet. He was keen to do full axilla ray clearance - I was not keen for this, favouring radiotherapy oblation of axillary (armpit) lymph nodes instead…
Histology/lab check of breast tissue after operation revealed invasive lobular cancer (usually difficult to diagnose). Some say this is more likely to appear in the other breast, some dispute this…
Anyway … this is how I ended up with surgery, chemo AND radiotherapy… and now Lectrozole for (?) 5 years … 😐
… and radiotherapy finishes TOMORROW … yay! x

[lexilou3]

Hi Nolton,

My surgery was wide excision, so radiotherapy was the next step. But only after they then checked the nodes, as once the initial surgery had been completed, my diagnosis changed from DCIS to an invasive cancer.

I am very frustrated at not moving forward sooner but am finally being kind to myself & lowering expectations. Hope this may have helped, if not best wishes anyway x x

Lexi xx

[Nolton9]

Thanks for your update - very helpful. I like most of us work and have 3 young kids so I don't come onto the forums, too much but tonight I have been dropping my eldest son off at school for a 2am departure to the Ajax stadium NL!! Sounds farmore fun - I should have just got on with them!!

geeG  and Lexilou- do you mind if I ask you  how you have ended up with radiotherapy and a masectomy please? (it is pretty rare, isn't it) I know that usually RT is reserved for those women having breast conserving tissue? I am in this situation, myself, because my mastectomy wasn't completed successfully.  I felt 'nodules'  which were residual disease rehrowing just a few months later. Further assessement has shown deeper than normal breast tissue under my skin envelope (i had a skin sparing mastectomy) I have had some of this removed by my first WLE and await a further followed by radiotherapy and then a very robust screening plan to keep what's been left under-check.

This was all compounded by the hospital policy to not check all margins with masectomies as they somehow even after the wide-spread adoption of the SSM mastectomy still state that a masectomy means the excision of all breast tissue.

I have my planning appoitnment in early April, as I just cannot go back to the "hospital" or whatever that got me here I am with a new clinic up in town and will have my radiotherapy at a site about an hour's trip from my home - 35 minutes further away than the hospital that did the mastetcomy.

Sorry I can't find it in myself to be geneous re how much vaugeness there is in the treatment of BC I actually think most of it is nothing more that a strategy to avoid patients being able to formulate valid objections and questions... but of course it is the Google age and that doesn't have to stop you.

Thanks for the update...... Take good care and don't try to be a superwoman  🙂

[lexilou3]

So right you are geeG. Thx for your kind words. I have just returned from seeing The second best marigold hotel with a pal. What a fabulouswith such wit. A lively escape for a few hours 😄
LL xx

[geeG]

Thanks Lexilou - and be kind to yourself. Someone I trust tells me it takes at least as many months to recover and find the new "normal" as it took from first diagnosis to end of all treatments… so please let your expectations of yourself emerge gently within the limits of where you are at the moment… we all want to get there 3 weeks ago… 😕 Hugs x x x

[lexilou3]

Hi GeeG, so pleased for you, over the half way hump, good going.
Gentle hugs
LL x

[geeG]

Hi Noltan and Lexilou - just checking in to update you…
I have now reached halfway with my radiotherapy - today was session 8 of 15. I am aware of steadily increasing 'tiredness' ('fatigue' sounds too dramatic for where I am currently at… ) and of reaching about 9pm when my energy levels, after sitting around for the evening 'relaxing', suddenly 'fall off a cliff ' and I know I have to get to bed! I am theoretically working 3 days a week just now - tho with RT every morning at 8.30am and second health-related appointments afterwards on some mornings, I am frequently VERY late starting in a morning, and finishing an hour early at 4pm to get a lift home rather than taking trains…so I feel a bit of a cheat…!
My DIEP belly-boob is certainly getting more RT dosage than I anticipated - but reading up on some of the relevant literature, this is clearly standard practice. Noticed it getting a little swollen by the w/e, and definitely tender tonight (despite applying aqueous cream ASAP after each session).
I had a lot of trouble with generalised itching with chemo - this seemed to clear up with Piriton - but is now around again (mostly controlled with a shop-bought antihistamine at the moment). Other than that the guts seem to be increasingly loose-ish … not needing Imodium at the moment, but I think is probably related to RT as well.
For further info, I live in Glasgow though born near London, and my Mx was for an Invasive Lobular Cancer rather than DCIS. Guess there is just too much to ask/ read up on in the first instance, so I concentrated on the next step each time - but I am a little disconcerted by the reports of skin and tissue changes happening over such a long time after RT for some folk.… though I guess ladies who have NOT had such changes are probably not on the forum reporting back to us…
I fully empathise with the feeling that "wait and see" is neither helpful nor reassuring … but there really are so many different reactions between ladies with similar diagnoses to similar treatments that I have to accept the honesty our Health Professionals extend… I think they are as surprised as anyone by our individual responses… just so long as we continue to share equal benefits from treatment!
Hope this info is of interest/ helpful/ supportive. RT is certainly proving as 'do-able' as chemo - and more tolerable - for me so far!
All very best wishes and hugs x x x

[lexilou3]

Hi both
I didnt have the reconstruction you each have had as there was sufficient tissue to refashion using a reduction style technique. My rads finished at the end of last summer and i have a firm lump remaining at the treatment site. (This has been ultrasound scanned, result of surgical treatment and rads not suspicious of new disease). Whilst working thru treatment is great if you can, i feel utterly miserable as am feeling am a failure as not yet back to full time work due to fatigue. Once i hit the fatigue wall coherent thoughts and speech goes.
I suppose i am writing this because we all vary so much the *wait and see* is the only advice they can give other than general advice.
I have learnt to be kind to myself and adjust expectations. I have a job i love, and am good at, but to be good at it i need a fully functioning brain, otherwise am a liability, and as such could lose my professional qualification.
Good luck ladies, may you continue to remain well and find this next phase not too challenging. LL

[Nolton9]

geeG Hope all is going well and not too many effects are coming your way.. if you have energy at all after treatment and work - would you mind letting me know how you are doing please? completely understand if you dont get round to it, even if its in a few weeks time - think we are in a small club - who wants it?!! Are you with a london hospital because I know from our senior BCN that I think its Guy's are doing alot more work into post-mastectomy radiotion after widespread DCIS... someone has to!!!!!!!!

[Nolton9]

Hi,

Thx so much for replying. Very useful. To be honest I'm a bit weary of the standard "the individual reactions vary" approach . I really don't think any other profession would be allowed to fob us off like it and be tolerated. surely some sort of  indication of  outcome on a sliding scale should be possible.  

[geeG]

Hi Nolton9 - I was diagnosed in June 14, had R Mastectomy with immediate DIEP reconstruction in September, chemo from October. This was for invasive lobular cancer, with the one sentinel node resected holding macrometastasis. I rejected surgical clearance of axilla in favour of the radiotherapeutic approach as a recent research paper credits both approaches with equal clinical effectiveness, but lower incidence of lymphoedema with RT (I know several folk who have been along similar paths, but with surgical clearance, and most have some lymphoedema. I am a bit of a wimp…).
I am now just starting radiotherapy this week (thought today was first treatment, but it transpired that after the simulator your next session is planning scans, so my treatment starts tomorrow).
I too hope (plan) to keep working my agreed 50% hours thru RT - office working, not much responsibility, not physically demanding - and very kind and supportive staff team/bosses/HR - so I am extremely fortunate! As I was in hospital last week for PEs, my plan this week is for Thursday & Friday (the missing 0.5 day will be made up from extra hours I have worked along the way - an excellent suggestion of my boss which is proving ideal for me).
Unfortunately as we are in a similar place on the treatment path I cannot answer many of your questions yet - but I did speak to the most experienced / senior BCN to ask about creams/moisturisers (as I do not see any merit in waiting until a problem arises if you may be able to head it off!) - and she gave me aqueous cream to use - this seems to be universally acceptable from what I have been able to find out, so I hope this may be useful info for you. Best used AFTER a treatment session, not (that day) before. As the belly scar is out of the RT field I understand I can continue using anything I like on that (and as it is still a bit tight and a wee bit 'lumpy' in places I guess I really need to give it a bit more attention).
When I last saw my Plastic Surgeon he did say my reconstructed breast would become 'firmer' re RT - but this was denied by a radiographer as not being true for everyone.… yet another instance of "wait and see because all treatments affect each individual differently" … great eh! Not much choice but "wait & see"…
Anyway - I wish you well for your journey thru this, and hope you /we find RT straightforward and with no/very minimal side effects…. Hugs…

[June_BCC]

Hello Nolton9

Whilst waiting for replies you might find it helpful to call our Helpline to talk things over.  They'll be able to offer practical information as well as emotional support.  The opening times are 9-5 on weekdays and 10-2 on Saturdays.  The free phone number is 0808 800 6000.

With best wishes

June, moderator

[Nolton9]

Hi girls,

Another few months in and I find myself on another board!  Hoping for some useful, been-there-done-and- it- was-actually-OK  advice from anyone who is able to help, please.

I had a SSM and immediate DIEP reconstruction, in April 2014. Unfortunately I have just also had a WLE to remove residual disease and some "left in" glandular tissue in the anterior (below-skin) of my breast. Now recommended, of course, to have RT as an insurance for the rest of the breast and as a mop-up in the area of residual disease.

Has anyone else been through RT after a autologous reconstuction?

Did your breast harden, shrink, change shape etc etc..

was it temporary or for good?

What precautions/creams did you use?

Were you uable to keep working through the course? I read, as with all of this, very mixed views. mopstly that you get a it grumpy toward the end - well tbh noone will notice I am furious x grumpy!

I now understand (hindsight is such a good thing - as is doing your own research!) that some of the Breast Units are as a matter of course including post-masectomy radiotherapy after DCIS, particularly over a large area. Due to building knowledge that this archtiecture can often be multi-focal and more wide-spread and hard to fully image. But clearly that is for the 'treating' hospital to make the call.

Has anyone had this as a next step?

thanks all, in advance.