Forum Discussion
Lillian67
9 years agoMember
Newly diagnosed and learning
I've read through some posts and realise I have lots of gaps of knowledge about what I have.
I know I have breast cancer, it's about 8cm, I know its spread to my armpit lymphs and now the nodes near my collar bone are swelling. It is oestrogen positive but testosterone negative.
I have had a bone scan and CT that came back clear thankfully and Im off to get a PET scan next week.
So far I have seen my GP, a surgeon and a breast care nurse (who is awesome).
I have lots of brochures that I have been working my way through and I received the My Journey pack that Ill go through this weekend.
I see an oncologist at the end of next week and have been told that more than likely I will be doing chemo the following week.
I have no idea what stage or grade it is.
I'm 40 with 2 beautiful little girls, 4 and 1, that I do not want to leave.
It's been about 4 weeks since my initial diagnosis. I keep swinging form I just want my treatment to start to I need more time to know whats happening.
I know I have breast cancer, it's about 8cm, I know its spread to my armpit lymphs and now the nodes near my collar bone are swelling. It is oestrogen positive but testosterone negative.
I have had a bone scan and CT that came back clear thankfully and Im off to get a PET scan next week.
So far I have seen my GP, a surgeon and a breast care nurse (who is awesome).
I have lots of brochures that I have been working my way through and I received the My Journey pack that Ill go through this weekend.
I see an oncologist at the end of next week and have been told that more than likely I will be doing chemo the following week.
I have no idea what stage or grade it is.
I'm 40 with 2 beautiful little girls, 4 and 1, that I do not want to leave.
It's been about 4 weeks since my initial diagnosis. I keep swinging form I just want my treatment to start to I need more time to know whats happening.
69 Replies
- primekMemberHope all goes well. I had to give up bits as I went when I realised I couldn't continue work and exercise as much as I thought I'd be able to. I just kept an open mind and did the best I could each week. Keep us up to date with how you go. X
- UnicornkissesMemberBest of luck, Lillian, with your Chemo.
Mel, where did you get that lovely Aqua headscarf? - ZoffielMemberWell done, Lillian. You've put yourself in the best position you can, now it's a matter of wait and see.
Chemo is unpredictable. You can have a couple of good rounds then a complete shocker, then back to being OK. I can't figure out what makes the difference and it probably doesn't matter as long as I keep reminding myself that next time is a whole new ball game and I won't know how it will affect me until I've done it. Hopefully you breeze through it; being young is a huge advantage, your body is more resilient and it sounds like you have heaps of drive and motivation. - melclarityMemberLilian good luck with heading into Chemo, it can be very daunting, I remember it like it was yesterday and am now 14 months post Chemo. I had 4 FEC 3 weekly and 8 Taxol, do communicate emphatically with your team especially as I see you are on Docetaxel as there have been alot of posts from alot of women on here regarding this particular one. You sound ready and setup which is great, I too did the same and felt some control...however it went pear shaped and reminded me that in life there are no plans and its OK...I was very ill on Chemo 4.5 months. I had to stop work which was difficult being a single parent of 2 but once I accepted my path I learnt alot and I'll never put work before me again. I couldnt exercise and had to learn to walk again pretty much, been a long road to recovery but Ive been seeing an Exercise Physiologist for a couple of months now and am rebuilding. She works with quite a few women who have BC but she also said she doesnt work with anyone in treatment that light exercise is ok but its a time of healing unless you were an athlete prior. Rinse daily with salt water, if you do get ulcers Kennalog is a cortisone paste thats fantastic! Nexium from your specialists is the best for reflux...coloxyl tablets for constipation or believe it or not PEAR JUICE.
Its a hard difficult road, but believe me once you come through the other side you will actually have some incredibly special moments along the way. Biggest of Hugs xo Melinda
A very SILLY PHOTO of My LAST CHEMO.. - Lillian67MemberWell I start Chemo on Tuesday. Will be every 3 weeks for 18 rounds - Docetaxel, Doxorubicin, Cyclophosphate.
Thanks for all your advice. I have a chemo day bag, full of things to keep me busy (or just to sit and relax). Teeth have been checked. In touch with Mummy's Wish. Have changed my diet and actually lost 2kgs, which is good cause I'm overweight. Seeing a dietician tomorrow to make sure what I'm doing is right.
have my Netflix's cued up.
i think I'm about as ready as I can, though I know until I am in the trenches I won't know exactly how it will effect me. I'm feeling very positive, which I think is with thanks to some great meditations I found.
@Tingy great to hear the exercise is working for you :) I'm off to see an Exercise physiologist on a Friday, so for now just doing some walking. I hope I can keep up the enthusiasm!
and I cut my hair short from mid back level. I'm loving it, so will enjoy it for another week before I shave it off ;) - primekMemberYou are doing great. I'd be buying in some movichol ahead of time as the chemo can make you really constipated. I didnt find anything else worked. Also even have some zantac if you are not on reflux medications, as it is a common side effect. It might get you through until you can see a Dr. The gastritis, bloating and constipation was really hard to deal with for me but once sorted I was good by 3rd cycle. And if nausea issues ...tell them. So many other options than the standard. Won't be long now. (PS I felt the same waiting for my surgery)
- TingyMemberHi Lillian,
I forgot to mention that having a portacath inserted is an excellent idea. My brother who's a Consultant Radiologist at St Vincent's suggested that I have it to save my veins given that I'm so young. If chemo is delivered by cannula it will damage the veins permanently, so in the future it will be harder for the medical staff to give drugs intravenously. Inserting a portacath is a simple procedure where they insert the device under your skin and everytime they just access the site to give you chemo. This procedure is carried out by the Radiology Department. They can also take blood from the same site. So on chemo days I just get the chemo nurse to take blood in the morning, wait for the results and then receive chemo later that day. If you do get a portacath, remember to ask for a "emla patch" each time you finish chemo, you put the patch on about 1-2hours before accessing the port to numb the area so when the needle goes in you won't feel a thing. - TingyMemberHi Lillian,
Also, I found Cancer Council's "Cancer Connect" program extremely helpful. They basically pair you up with a support person who has recently finished treatments and who are in a similar situation as you ie tumour size, grade, young kids at home, the planned treatments you'll have whether it be surgery, chemo, radiotherapy and hormone therapy. My support person was also a mum with young child and she gave me very practical advice about how to look after my oral hygiene to prevent mouth ulcers or tooth decay (as we are immune suppressed) from side effects of chemo such as vomiting (luckily I never did). She recommended that I use Biotene Dry Mouthwash and Sensodyne Pro Namel toothpaste (protects teeth against effects of acid wear if you vomit) which you can buy at any chemist. You can also get GC Tooth Mousse from your dentist, it's a topical creme with bio-available calcium and phosphate. If you haven't started chemo, organise to see your dentist for a check up and clean. I found my support person an invaluable resource while going through treatments because I felt so alone as no one in my social network is going through breast cancer treatments so they don't know what you are going through really even they sympathise. A bit like being pregnant, you need to have been pregnant to know what morning sickness feels like for example.
I also saw the Catalyst and because of that, I have exercised throughout my chemo treatments and still continues during radiotherapy now. I exercise 4-5 times a week. I used to go for a session on a chemo day after the injections. Call me crazy but I felt Ok so I did.
The best advice I've ever got was to trust my oncologist completely, and don't worry about what other people say how their mum did this when she had breast cancer and don't Google (unless it's from credible sites like the Cancer Council or BCNA)! It will just make you more stressed. If your medical team has recommended you having chemo first then there's good reason for it. I know the feeling that you just want the tumour out ASAP but I'm sure your doctors knows what they are doing so just focus on your girls, go do exercise, eat well and rest well, prepare your body the best you can as it is going to battle. I had been very lucky to not had any mouth ulcers, any change in taste buds, not much diarrhea in terms of side effects. I believe it was exercise that kept fatigue at a minimum. In a way I'm glad my girls are so young that they don't understand what's going on and doesn't ask questions yet. I just tell the older one that mummy's sick and needs to go to hospital and she's OK with it.
Remember just one day at a time, you will get there. - ShareMemberHi Lillian, thought I would check in and see how you are doing.
It is so difficult to mentally prepare ourselves for an appointment - of course one thing leads to another - appointment with oncologist, haircut - all little hurdles to overcome as mentally we make plans and then they get changed or put back. You sound like you are pretty organised to me !
Let your hair down and enjoy a wonderful evening with your husband - just the two of you and without your little girls. You both deserve to spend that time together just being husband and wife without all the other distractions going on.
Try not to let that anxiety take hold. My cousin's daughter was diagnosed with bc just over a year ago and her oncologist recommended the same treatment as you - chemo first then mastectomy. The chemo will help to stop the cancer from growing and spreading further in your body and there have been cases where the lump has gotten smaller following chemo and before surgery. My cousin's daughter was also told by her oncologist that recent studies have found that it is being recommended more and more with current stats and research.
Hopefully the discomfort from your breast and swelling won't continue to be an ongoing problem for you. That heaviness in your chest however perhaps is from concern and worry (not just your lump and swelling). All perfectly natural and understandable.
Take care - Sheryl xx - Kat09Member
Hi Lillian67, like everyone here I am sorry to hear about your diagnosis. I am relatively new to the group also and have found this site and the ladies on it a great source of information and comfort. I was diagnosed with an aggressive stage 3 BC that has spread to 1 lymph node just prior to Christmas. I started 12 weeks of AC Chemo ( 3 weekly ) on the 5th Jan. My tumour was 5cm and was also hard and sore, after the 1st round of treatment my breast softened and the soreness has gone completely, making my oncologist very happy and me of course. I have had a port inserted and it is a lot easier having treatment with it although there is initially a bit of minor discomfort, bruising etc but it only lasts a little while. My chemo treatment will run over 6 months AC first for 12 weeks ( halfway through already ) then 12 weeks ( weekly ) of Taxol and Herceptin which will go for 12 months. Surgery in whatever form will be in there somewhere and then radiation. I try to just focus on one treatment at a time and not get too overwhelmed by the whole process as it is overwhelming and scary. all treatments vary depending on many factors so I have tried not to get too bogged down with ' Dr Google ' ( best advice my specialist gave me ) . I tried cold caps initially to maybe save my hair, they didn't really work for me so on Australia Day my husband shaved my head. I had a cry when my hair started to thin as I was hopeful that I may save it, but at the end of the day it wasn't worth the extra stress. I have a couple of great hats, a wig and some rouched bamboo caps, I figure winter is also coming so there'll be some really nice winter hats and beanies around.
I really trust in the treatment that I am receiving and the Drs that I have taking care of me and although this is a really crap thing to have to go through I know that I'll get through, just 15 months of a 'different normal '. Getting to a place of accepting the 'different normal' has taken a few tears, some anger and a lot of understanding and support from my husband, family and all those that care.
know that we are all here and as Melclarity said when I first joined we all ' get it ' whatever it is your feeling or facing.
Kat x