POST MASTECTOMY

Margie, in term.ofmcost my friend I mentioned that worked found them for about $60-80 but they go right up into $100s depending on the style and actual make...

Best thing is to ask the breast care nurse if she can direct you maybe. And remember to get a decent sleeping cap or can google using a cropped tshirt for that (can you tube it to see how to crop and wear them on tour head). Plqce I found for headgear the the nurse put me.o to suggested either cropped small tshirt or larger baby onesie or baby singlet as they tend to be super soft and comfy...

You need something to help you deal with heat loss through your scalp... May sound weird but definitely need it...

Jel.

sorry about the typose... am.in bed and typing on my phycho phone which changes words way after I am done typing... Not an autocorrect - some weird feature on a psycho phone that thriws in gibberish wirds where actual words typed previously ??????

Hi Margie,

If AC Chemo they are normally 3 weeks apart... Some have it every 2 weeks but usually is 3 weeks.

There are different regimes for different diagnosis so just hang in there until your appointment.

Yes my chemoncould be deemed preventative as my nides had nonsign of cancer but mine is grade 3 and just under 3cm and as I am 44yo it was deemed agressive even before they found the beginings of the 2nd cancer in the margin agressive as it was 68% (apprently everything over 25% is deemed aagressive so chemo is to as they phrase it there to "mop up" anystray cells in the body as they cannot guarantee there are no such cells as even when a nide is clear it means it was clear when exytacted nonguarantee that nothing ever went through it plus with me they only took out 1 node and since many could be involved they want to be sure.

Normal treatment would be the heavy duty chemo every 3 weeks then slightly gentler version of a weekly chemo for 8 to 12 weeks but due to my preexisting conditions and allergies I get the bastardised (watered down) version of just AC for 4 sessions each approx 3 weeks apart.

Then they will do radiation for provably 6 weeks which is aimed at killing anycells left in the boob if there are any. Chemo is to treat the rest of the body...

Then because mine is hormone reactive I will be on hormone suppresants for 5 to 10 years (providing I can tollerate hormones suppresants).

Again - everyone is a bit different both in terms of treatment and how they react but do keep in mind they will reccomend the right thing for you and your circumstances and they will keep your long term health and safety in mind.

It is absolutely normal to be apprehensive and anxious so write everything down now - whatever you want to ask them on the day and remember to talk to the breast care nurse as well as if wanting to get a wig she may be able to reccomend a good place. I was last week here in Sydney directed to a place by my nurse where they are well below half price of any other store including online ones I had been able to find. These leadies are super helpfull very knowlegable so make sure to soeak with her and ask for advice and guidance as they really do have our best interests at heart and will help you navigate this process righ up to the end of your treatment. Doctors may octors based on stage of treatment but the same nurse will stay with you throughout...

Hugs

Jel

hi there jel

will find out Monday about my attack plan as I like to call it. how often did you need your chemo and for how long??? Is that preventative chemo that you had ??? That's what I may or may not need as my lymph nodes are clear and so is the margins, and had the total mastectomy also as i mentioned. I will wait til then to see if I actually need it or not but am bracing myself in case I do. Sounds like you just get through it so that's good. Hope you are doing good too..

Margie:)

hi there

thanks for your response at least its given me a heads up if chemo is recommended say the AC stuff you talk of how often do you have that and for how long ???  I will definitely cut my hair off :( its so long and thick and I love it but love living more and like you said it does grow back. I have my oncology appointment on Monday so will know more then as I said before its not a definite but I'm bracing myself for it any way. It only preventative my surgeon said so I guess we will wait and see but it was so good to hear that you had a manageable time with it, I think I will go nuts if I cant work lol!! . I will need to find a wig place north Brisbane if this occurs and I need one do you know how much they cost??

thanks

Margie

As everyone says, chemo affects everyone differently. There's also the issue of what you want to do, not just what you can do.

I worked right through A/C and Taxol/Herceptin ( with only time out for actual treatments).  I manage events so not entirely a desk job. Main issue was that I was never sick, or even felt sick and  did not get fatigue (or chemo brain). All of those would have made continuing work not only very hard for me, but pretty impossible for my work colleagues.

However you plan (and planning is good) you don't know until you start the treatment. I did get some side effects, but none that made working too hard. I enjoy my work, and it kept me from dwelling too much on the cancer or the treatment. But everyone is different.

I didn't find losing my hair too bad either - annoying ( I had just grown out a colour!!) but I got it cropped really short as everyone advises, the sore scalp feeling didn't last too long, my hair felt so horrible for a week before it fell (looked alright) that I was almost glad to see it go. My hair started re-growing while I was still on Taxol. I did use a wig (Head Complements in Ringwood), found it easy and simple, and it allowed me to ignore my treatment around others when I chose to do so. All my staff knew and were on chemo-brain alert (tell me!) but it did not happen.

Good luck whatever you decide.

Dear Margie,

It's Lisa from the Policy Team. I just wanted to  let you know about BCNA's fact sheet about chemotherapy and hair loss in case it is helpful.

If you have questions, the Cancer Council 13 11 20 Information and Support line can also be really useful, as trained health professionals are available to answer questions and talk about any concerns you might have.

Warm regards,
Lisa

Hi Margie

I know it is easy to say it and not as easy to implement it but you really need to not worry to much about Chemo now - not until they tell you that you will be having and what type.

Different types have different sideeffects and you do not necessarily lose the hair on all of them.

I am having the AC Chemo and in that one you definitely do lose the hair and most of it gone in week 3 post 1st session. Sadly while we are supposedly losing all hair on the had and we lose the underarm hair, facial hair and pubes one damn thing nurses told me will not go is leg hair ??. I mean seriously the big 'G' has a warped sense of humor - hair and eyebrows and lashes go but leg hair digs in and withstands the lot....

To be very honest with you loss of hair is not that big of a deal once you start Chemo. I mean it was a huge deal for me previously but then in week 2 I shaved my hair to a crew cut (No 4 as advice in a look good feel better workshop) and frankly took me couple of days to get used to it. Day 19 my hair started to seriously shed in 24 hours about 80% of it was gone.  I am getting really irritated by the little hairs that are dropping off like crazy and making me itchy as they land on my neck, face and get caught in my clothing plus yes scalp does hurt as they start to drop. One thing that I found really weird that I am not getting uset at is the thinning hair or the almost bald patches. I honestly think that the crew cut I sported for 7-8 days prior to it falling out got me so used to it that it is the main reason why baldness is now not at all upsetting so I highly reccomend crew cut way before it starts to shed (that is IF you are having AC). 

But again, if it is Chemo, your Oncologist with tell you all possible sideeffects way in advance. And if they say you will have Chemo I really reccoment enrolling into a look giid feel better workshop as we got a lot of really usefull information on how to care for our skin and scalp during chemo. I did it day 3 of my 1st session and really really helped me understand what will happen. 

Again, some regimes can be more grueling and others easier and while I know someone that has worked 3 days per week through 6 sessions of AC Chemo (it was a desk job) you need to be prepared that while having Chemo there are days when you feel completely wiped out and not even up to walking from one room to another. There is also the so called "Chemo fog" and it is not a myth. On AC at least it hits the 1st day and lasts good 4 to 5 days and it really interferes with your perception of what is going on arround you - so much so that I read labels of my meds 5 times and while speaking to myself loudly what I needed to do and what the label said I still took wrong meds and almost overdosed on the serious stuff. And another lady having it even though I warned her about my experience a week later did in fact take wrong meds herself and ODed... Sorry if I am scaring you here but only mentioning it as if you do end up on AC Chemo since it seems from comments of most people on this forum that Chemo fog and feeling super tired initial few days to be common to us all if you work as a nurse those 2 you really need to consider very carefully as they will make your job really difficult.

It is not all doom and gloom - if it turns out to be AC Chemo you can read blogs I am many other women have been creating on this site describing our experiences gives others idea what could happen to them and help them prepare ?

All in all, at times hate it, but overall it is managable and at the end the damn cancer gets wiped out so long term gain outweight the short term chemo frustrations ??

For now just take it easy, rest up and relax and feel free to message me any time ??????

Hugs

Jel.

Hi there Jel

Thanks for your response, I have basically braced myself for the chemo, definitely do not want to miss anything that's for sure, my margins were clear post op but I'm still anticipating that chemo will be an option, thanks for the heads up, I will expect the worse and hope for the best I guess now if I have to have it as you said everyone is different in how they cope with chemo, so from what you are telling me it seems preventative chemo is just as  bad as the other chemo and I'm anticipating now that it will be hell most likely including the hair loss is that right??? I have tonnes of hair and its really long and thick so when I find out for sure what treatment plan I need is it better I chop it off shorter to manage better as its going to fall out anyway?? My girlfriend who has had chemo for her breast cancer says that its really painful when it falls out and she just shaved it all off??? Any advice on this will be appreciated too from anyone. As for work. I'm a nurse and my workplace is so supportive so I'm lucky that way thanks for your help and wishing you all the best kind regards and hugs Margie

I had a lumpectomy only but similar diagnosis tumor jusy under 3cm grade 3 and stage 2 as no lymph node involvement. I have large boobs (D) thus lumpectomy as they took about half the boob

Mine was estrogen positive though and in my case they also found a 2nd primary cancer in the margin. Only a tiny one - under a millimetre but the emphasis the point tyat even a clear node does not mean body is completely cancer free.

I have been put on Chemo because it is grade 3 as grade 3 means an agressive bastard so even though there is no node involvement they cannot guarantee that there are no cells elsewhere in my body like the ones they found in the margin so they want to make sure nothing escapes. Made sense to me so I absolutely was for iwa Oncologist can also give tou prognosis for yoir situation for various treatment options which will help you decide if you want Chemo or not. Make sure you are happy to hear the prognosis as being told those percentage rates/chances for survival can be confronting as unless cancer is grade 1 they are never 100%.

In my case I was more than happy to have Chemo as I believe they know better tham me what will give me best chances to beat this shit and I will be happily guided by them.

It is hard to guess what Chemo they will reccomend for you and different chemos have different sideffects plus everyone has a slightly different experience so hard to tell if you will be able to work through it or not.

Some do work while having Chemo and some take time off so worth while giving a heads up to the employer you may need leave but leave your decision making until after you have had the appointment with the Oncologist who will discuss your planned treatment. If having chemo theynwill give you paperwork explaining all potential sideffects so will give you a better idea about ability to work.

Rremembr though that Chemo will probably be the hardest assault on your body whateber type it is and plan to be kind to yourself. It is turbulent both emotionally and physically and if planning to work do make sure you are not doing it for the wrong reasons as your wellbeing long term needs to be No1 and depending on your job you may or may not be able to function as your role and employer require. The last thing you want is to place unecessary stress on yourself while undergoing Chemo.

I remember being told by a Neurologist (have preexisting conditions so saw him pre Chemo to ensure planned AC Chemo could be done without huge adverse effects on my neurological problems) "Next few months will be absolute hell for you and the worst thing your body will ever have to survive through so just accept it now. You must accpet in your mind before it begins that it will be Hell but you will make it through it and it will give you the best chance for a healthy life. As bad as it may get at times just remember that yes, it is abdolute Hell, but it Hell with a definite end date and there is a definite light at the end of that tunnel. Having a good healthy life is worth going through several months of Hell and no income" (I also asked him if it was worth my trying to continue working while undergoing Chemo - again I have a myriade of complicated preexisting conditions so with rhat and my crazy job it made sense to separate from the workplace during Chemo)

By the way really glad your surgery went well ??????

Jel.