Recovery times and support required following mastectomy and chemo

Shenners

Sorry for long post... I'm new to this group. I was confirmed 2 days before Christmas with DCIS and suspected Paget’s Disease. I am facing a mastectomy and possible chemo, etc. I'm now looking at what my options are with respect to reconstruction. I’m seeing my breast surgeon tomorrow with my growing list of questions. So far she has suggested a reconstruction of the affected breast using a bit from my tummy. I asked about a double mastectomy - which she would support - but she said that type of reconstruction may not be possible as I don't have enough 'flesh' on my tummy. I'm still not sure what to do but I'm leaning towards a double as I don't want the anxiety of annual check ups moving forward, especially for my kids. I haven't met with a plastic surgeon yet, given the time of year.

I am a 54 yo working single mother of 3 beautiful (mostly) humans aged 13, 16, 17 as well as 2 dogs and 2 useless cats.  It's been a tough few years. My wonderful husband died unexpectedly in November 2023. Two months before that his mother also died suddenly and two months before that my mother had a life threatening seizure in front of me and was put into an induced coma and was in ICU for 3 days - she had had a stroke and breast cancer 6 months before that and she has Alzheimers. She then went into care two weeks after my husband's funeral. My Dad lives near by and is healthy - thank goodness. Given what's been going on, 'I don't have much left in my tank' to deal with this latest challenge but it is what it is. I am very lucky to have some wonderful friends and family (however it's not the same as having your partner support you.)

So, I'm trying to prepare myself for what's coming - physically and emotionally. I'm wanting to understand what kind of help I'll need following surgery or surgeries. What will my energy be like? How long until I will be able to work, cook, clean, drive, etc? My kids are as helpful as any teens - which is OK but not great and the two eldest have especially busy schedules with lots of activities on top of doing their VCE. I appreciate that every situation is unique but knowing how others - particularly other single parents - have managed will help with my decision making and help me prepare for what lies ahead.
Also, any referrals for mortality/grief counselling in Melb would be appreciated.
Thank you. xx

Afraser

Dear @Shenners

No-one ‘deserves’ cancer but you have been through quite enough without this. Your practical approach and resilience is outstanding. I’m sure you have moments when it’s not so good but under the circumstances you are to be utterly commended.

I had a single mastectomy and no reconstruction so I can’t advise on bilateral
surgery or reconstruction. But the latter can be time intensive and possibly expensive depending on your circumstances. In due course your surgeon can give you more details. 

Your wish not to live in perpetual fear of breast cancer is completely understandable but again, may depend on circumstances. My oncologist believed that I had a possibly greater chance of cancer elsewhere in the body than in my (so far) unaffected breast. So far, so good, 12 years! My surgeon preferred to wait rather than immediate reconstruction, which suited me fine as I wasn’t sure about it. Some people hate being lop sided, I’m large breasted, use a prosthesis and find it fine. 

So…among all the other options, there is also the one of a single mastectomy (which is usually remarkably painless and a quick recovery) and take some time to consider and make longer term decisions. That may alter your reconstructive options so needs to be discussed with your surgeon. But it may also give you some time to fully absorb the losses you have experienced, help your children in their own demanding year and breathe a bit!

Can’t recommend too highly a good counsellor. This is ‘mess with your brain’ stuff. All of it. I spent a remarkably short time with an excellent counsellor - she gently but firmly questioned some of my long held practices (very little of her concerns were about how I was dealing with cancer!) that were not productive in a balanced life - she didn’t tell me what to fix, she just encouraged ‘the examined life’. Her exercises led me to a better life/work balance, and a sane and productive attitude towards death. I still use many of them. Knowing that cancer is often the first brush with that intrusive concept is a step in the right direction all by itself. My counsellor no longer consults in Melbourne, but your GP may be able to recommend practitioners suited to cancer patients.

So many decisions. My very best wishes for your health and happiness whatever you choose. 

arpie

Gosh, you've had an extremely hard time of it in the lead up to your diagnosis, @Shenners xx.

Sending you big hugs xx. I lost my husband to cancer 2.5 years ago & know just how heart breaking it is to lose your wonderful partner xx.  I saw a grief counselor up here - I hope you'll be able to see someone soon (or ring our helpline, info below, in the meantime.) xx  Make sure you ask your medical team to point you to some counseling too xx  In the meantime, have a listen to Charlotte Tottman's Podcasts, as she covers an awful lot of topics, having been diagnosed with BC herself & having a double mastectomy & remaining flat.  She is very easy to listen to & very much 'common sense' & calming  xx
http://www.drcharlottetottman.com.au/my-podcast.html

Have you been assigned a Breast Care Nurse yet?  They should be a wonderful support for you as well.  And if you want to speak to someone here, ring our helpline 1800 500 258 Mon-Fri, 9-5 xx They've come back 'on line' today, after the Xmas break.

I have no doubt that your family & friends will muck in together to help you out with meals & stuff (mowing, gardening, helping with the kids when you are not able) so make sure you take them up on any offer xx   Even work out a roster, maybe?  In the mean time, consider cooking & freezing some meals now if you can - to make it a bit easier later one when you are home again.  

Having fairly young kids too, There are also various organisations (like Canteen and Red Kite and Camp Quality) where they give kids (who's parent has cancer) the chance to meet up with other kids in the same boat & just have fun together.  Your hospital Social Worker should be able to point you to local organisations who may be able to help too.  Your Breast Care Nurse may also be able to point you to relevant organisations, too. xx

Re your surgery - I only had a lumpectomy - your surgeon will be able to fill you in on the recovery - as it depends on whether you are having immediate reconstruction, or have to wait for it!  We have 2 groups here that you may like to join today (so you can read up tonight before seeing the surgeon tomorrow!  Maybe call the Helpline, for that??) Reconstruction & those who choose to remain flat.  

https://onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstruction

https://onlinenetwork.bcna.org.au/group/29-flat-chat-no-breast-reconstruction

You can also read up on other areas of the forum that may interest you, here (including some tick sheets on your mental & physical recovery, post op.) 
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest

take care, be kind to yourself, you are being a superwoman just now xx  Take things one day at a time, one hour at a time, if needs be xx  Wishing you all the best for tomorrow xx

Suki

Hi @Shenners

I'm sorry to hear of your diagnosis and that you've been through a tough few years.

I had a bilateral skin sparing mastectomy (ie nipples removed) and direct to implant surgery in May 2024 for invasive ductal cancer, with a sentinel node biopsy at the same time.  I saw an oncoplastic surgeon who could complete both the breast removal and the implant insertion in one go (to limit the number of surgeries required).  Implants were recommended due to not enough of my own flesh being available for a DIEP flap recon.

I went through the private system and was out of pocket approx. $6,500 for the surgeon and anesthetist after private health and Medicare.

Surgery took approx 4 hours (less than DIEP flap) and I was in hospital for 5 days.  I stayed in until my surgical drains came out, but a home nurse was available if I wanted to discharge with the drains in.  Managing a drain on each side can be tricky and uncomfortable.

Pain was manageable and I stopped taking the pain killers on my return home.  Movement was restricted for a few weeks (and no driving for two weeks), but I was provided with physio exercises to do straight away and these helped gain mobility back.  

Before heading to hospital, I purchased a reclining camping chair (as this was cheap and we didn't have a proper recliner) which helped me to sleep on my back at home - I slept in it for the first week home and then went back to a normal bed, but still on my back.  To avoid any arm extension, I moved my favourite kitchen items (ie coffee cup etc) to a lower cupboard and made sure I didn't carry any heavy things (ie shopping bags, full washing baskets) for approx. 1 month.  You also may not be able to hang washing on the line, so I recommend getting a metal rack thing and doing light loads only.

I am happy with my implants, although they will need to be changed out in 10-15 years.  I don't need mammograms, but do have a yearly ultrasound.

All the best and feel free to ask any questions xx

Shenners

Thanks so much for your supportive comments.  I've watched the webinar and listened to a few podcasts which was really helpful. I felt much more informed when I attended my appointment with the surgeon. I now have a plan and I'm getting organised in preparation for what lies ahead.  I found an app "gather my crew" which will help me coordinate the support I'm going to need. Deep breaths and fingers crossed...xx

arpie

Great that you have your plan & feeling more in control @Shenners xx

This diagnosis REALLY mucks with your brain even MORE than your body .... so remember to be kind to yourself, stay away from Dr Google (stuff may be old & not relevant to your diagnosis) and try & stay 'in the present' & not worry about what 'may' happen, as it'll just muck with your brain again! xx

That app sounds brilliant!  

Take care & all the best

Abbydog

Dear Shenners,
My you have had some rough years, and some significant losses.
Life just doesn't seem fair.  But you will come through this.
There is some very good advice above.
Perhaps your surgeon has enlightened you on possible future surgeries etc.
Suki has given a good account of her surgery and recovery.
My story is different. My cancer was Stage 2 and Grade 3. 
A Mastectomy with Axillary clearance was the first part of my treatment.
I have been very lucky and I did not find it too difficult.
I had 3 wound drains, they were all out before leaving hospital, on Day 6.
 My Surgeon wanted my dressings kept dry for 2 weeks, that was annoying but doable.
I had a good range of motion, very early. I was able to brush my hair and blow dry my hair within the first week.
There weren't many things that I couldn't do. Of course I didn't vacuum (BC on R side and I'm R handed), but I can't remember for how long. I didn't drive for a while, but I can't remember this either.
 It has almost been 5 years and I suppose that it is good that the memory fades a little.
 I did not have any real complications. But I did have a Seroma, which is quite common.
This was drained about 5 times. I also had some Cording.
 5 weeks after Mastectomy, I commenced Chemo EC x4, Paclitaxol X12, Then RT for 5 weeks.
 If you have Income Protection Insurance(it may be in your Superannuation), I'd recommend starting a claim.
 It can make life simpler and less stressful, but some people prefer to be distracted by work.
 The only thing is that you don't know how you will cope with Chemo. The IP claim can take some time
 to be processed.
 I worked in a hospital, and needed to be reliable once at work. Also the risk of infection at work was 
 significant. It was 2020 and Covid was a big worry also. 
 I had few side effects with Chemo, all very manageable. I was very lucky, compared to some. Never nauseated.
 I have had Reconstruction, but it was delayed until recovery from all of the other treatment. 
 I was not suitable for DIEP. On CAT scan my abdominal blood vessels were not suitable.
 I had a Lat Dorsi Flap and Prophylactic to the other side at the same time. 8hrs surgery. 6 wound drains.
 Bilateral tissue expanders, and later changed to Implants. I am very happy with my surgeries. Quite Symmetrical.
 Immediate Recon is suitable for some, but not for all.
 My Surgeon and I, felt treatment needed to be underway ASAP. And that additional surgery might delay that.
 There are some similarities with all of our BC, but also so many variations, with diagnosis and treatment.
 You will find out more about your own treatment plan, and different pieces of information will be helpful.
 Sorry, this is so long.
 Wishing you all the best, with your surgery and treatment. We will be thinking of you.