Hi everyone. Sorry for the long post in advance..... sooo this is my story. Im 32 years old. I was talking in bed with my boyfriend and went to lay on my back and something pinched in my right breast. I felt a lump that was different to all my other lumpy breast tissue and the BF agreed. I see a chiropractor for realignment of my body and lymphatic massages every 4 weeks and noticed all the other lumpy breast tissue was broken down but that lump. After 2 visits and the lump staying i went to my Dr who sent me to have a mammogram (which friggen hurt) and an untrasound which i had to wait 4 weeks for the appt. I got in in the 16th Aug Thursday 2018, they scheduled an urgent needle biopsy the 20th Aug and by the 23rd Aug i was diagnosed with Breast Cancer. I went into surgery 5th Sept to have a lumpectomy and some lymphnodes removed and the specialist confirmed it started making its way into my lymphnodes. I've been diagnosed with Stage 2 Grade 2 (was grade 3) Ductal Breast Cancer Her 2 negative and oestrogen and progesterone positive. I have been using implanons in my arms for nearly 10 years and it makes me wonder if this has contributed to this. I had a Smart port inserted 28th Sept. I'm currently completing IVF before my Scheduled Chemo on the 22nd Oct. I have to have treatment every 3 weeks for 4 months.Then radiotherapy and hormone therapy. The sheet for Chemo says FEC part one of fec-d and my second sheet says part 2 of FEC-D i hope you understand this. So what do you wish you were told about Chemo? My hospital doesn't have the cold caps and has advised me my hair will go. I've been told to put on gel toes and nails as i will be sun sensitive and i have purchased soft toothbrushes for each chemo round and moogoo body wash, mouth wash, toothpaste and deodorant.

Everyone does chemo differently partly because chemo types differ but also because we are all individuals. My experiences on chemo may not be yours. For me it was brutal. I would be not great for 10 to 12 days after chemo - I had a 3 weekly cycle. Others manage to work right through. Find a a good nurse they are invaluable in answering questions providing advice on managing side effects and are great sounding boards. My oncologist has a nurse and she has been my lifesaver on many a day for my “dumb” questions, sorting out meds, advising me on what to take to deal with my latest side effect etc.

Hello @Nay86 Welcome to the online network. I have edited your post and added Tassie. Im sorry to hear of your diagnosis, great that you followed through and had the breast lump investigated. Dont hesitate to call our 1800 500 258 number if you would like to speak with a cancer nurse for information or support.All the best with your upcoming treatment,kind regards Giovanna

@arpie yes i did receive my journey kit and post surgery bra. Went into a local bra store and bought some comfortable no wire bras. They are going well so far. Just have to keep ontop of arm exercises from surgery. @Giovanna_BCNA thank you for that :) @Sister thanks yes i have somac for heart burn and i have soda water, hydralyte icypoles, moogoo toothpaste, mouthwash, deodorant, body wash. I was given an oncology pack. Its safe to use and really nice. I also have hand sanitiser. Are the wipes for home use or public or both?

@Nay86 I had a different cancer and a different chemo to u and everyone does react differently and u can react differently each cycle. Just don’t be afraid to ask for help and never suffer in silence if u r sick or in pain. Sending u big hugs xoxox

Hi @Nay86,Welcome to the forum lovely. You already have some awesome advice from the ladies (as usual). Trying to work out what caused it will do your head in. There really is no rhyme or reason to it by the looks. Just plain out bad luck being the 1 in 8 winner of the booby prize.I had a similar rotten thing as you by the sounds. Stage 2 grade 2 ER/PR +, HER2neg. Lumpectomy, Aux clearance 5/24 nodes involved, 6 mths chemo (different regime, I had ACT) 30 rounds rads, 10yrs hormone therapy.What I wish I had have known at the start?? I wish I had have known that my brain was conjuring up a lot more of a horror story than what it actually turned out to be. It would have stopped a lot of anxiety, tears and worry. I wish they had told me that when you need to pee, you better run fast. There is not much time in between. It almost got very embarrassing a couple of times.. That one is not on the list of side effects. Definitely get the nails done. I just used gel polish and had no issues with my nails. I had a reasonable run with the whole thing I guess. Kept my hair (sux they don't have a cap for you to try) never caught any bugs or colds. Minimal fatigue and just tried to carry on as normally as possible. There were crappy days along the way but a lot that weren't.Very few problems with rads, apart from it being a pain driving there everyday. Moo Goo is awesome stuff.One thing I do suggest is to take a lot of photos of the fun things you do along the way with family and friends. It gives a great sense of achievement to see what you managed in amongst treatment. Plus that way when you look back that time in your life is not all about the cancer.xoxoxoxo

If you knew then, what advice would you give to someone about to start Chemo? Im in Tassie

29 Replies

Afraser
Member
7 years ago
Good mouth hygiene is recommended but you may also wish to regularly (twice a day or more) rinse thoroughly with a salt/water solution or something similar to discourage mouth ulcers. I am not sure about oestrogen suppression at this stage, best to discuss with your oncologist. If cold cap is not an option for you (it works well for some but not for all) you may wish to consider shaving your head or having a really short, short cut with the clippers to minimise mess and distress when hair goes - usually about two weeks after your first chemo. Chemo isn't fun and reactions vary a lot - hard to know till you start. But most find it doable - takes energy, so prioritise your commitments at least until you know how you feel; and determination - but getting rid of cancer is a real incentive!! Most of all, don't compare your reactions or side effects with others, it just doesn't work that way. Some have a really rough time, others - like me - can live pretty normally through chemo. It's an unlucky dip - one day at a time is a practical approach. Best wishes and good luck.
youngdogmum
Member
7 years ago

Nay86 said:

Hi everyone. Sorry for the long post in advance..... sooo this is my story. Im 32 years old. I was talking in bed with my boyfriend and went to lay on my back and something pinched in my right breast. I felt a lump that was different to all my other lumpy breast tissue and the BF agreed. I see a chiropractor for realignment of my body and lymphatic massages every 4 weeks and noticed all the other lumpy breast tissue was broken down but that lump. After 2 visits and the lump staying i went to my Dr who sent me to have a mammogram (which friggen hurt) and an untrasound which i had to wait 4 weeks for the appt. I got in in the 16th Aug Thursday 2018, they scheduled an urgent needle biopsy the 20th Aug and by the 23rd Aug i was diagnosed with Breast Cancer. I went into surgery 5th Sept to have a lumpectomy and some lymphnodes removed and the specialist confirmed it started making its way into my lymphnodes. I've been diagnosed with Stage 2 Grade 2 (was grade 3) Ductal Breast Cancer Her 2 negative and oestrogen and progesterone positive. I have been using implanons in my arms for nearly 10 years and it makes me wonder if this has contributed to this. I had a Smart port inserted 28th Sept. I'm currently completing IVF before my Scheduled Chemo on the 22nd Oct. I have to have treatment every 3 weeks for 4 months.Then radiotherapy and hormone therapy. The sheet for Chemo says FEC part one of fec-d and my second sheet says part 2 of FEC-D i hope you understand this. So what do you wish you were told about Chemo? My hospital doesn't have the cold caps and has advised me my hair will go. I've been told to put on gel toes and nails as i will be sun sensitive and i have purchased soft toothbrushes for each chemo round and moogoo body wash, mouth wash, toothpaste and deodorant.

Hi, did you use anything to control oestrogen levels during IVF? Thanks! Best wishes for you :)
Sister
Member
7 years ago
I kept a packet of Crown Mints on the cupboard for that awful taste from chemo
arpie
Member
7 years ago
When my husband was going thru chemo in 2010 (he had most of his stomach removed) he found that chewing gum helped 'between meals' to clear the 'foul metal' taste in his mouth. He also got very picky with his food. He went thru a phase of only wanting KFC Wrap & berry smoothie - then Steak & Kidney Pies from our local bakery - so whatever he wanted, he was allowed to eat as much as he wanted (once he could eat more than a couple to tablespoons at a time!)
Sister
Member
7 years ago
Ativan also helps control nausea. I took it for that throughout chemo with the added bonus that it helped me sleep. Drawback is, of course, that you can't take it if you have to drive.
Nay86
Member
7 years ago
@Zoffiel yes my surgeon was VERY clear on that one. She said ward 5D were trained and the holman clinic and that was it. And to absolutely not let anyone else touch it. She is a brilliant surgeon. :)
Nay86
Member
7 years ago
Oooh thank you @pammiesyd i am actually quite and anxious person. This should help immensely x
pammiesyd
Member
7 years ago
Something I found very helpful was asking my onc for medication to calm me down just before treatment, and to help me sleep during the first 7 days of the cycle (Ativan).
Nay86
Member
7 years ago
@Sister thank you. They called it a smart port. I might just check with the Holeman clinic tomorrow just to be sure :)
Sister
Member
7 years ago
@nay86 I don't know if there's differences between ports but mine only had to be flushed every 6 weeks so fitted within the chemo schedule. The only special one I had to have done was after chemo ended as my onc wanted it left until after rads in case it was needed for anything.