12 days since lumpectomy and still no results

Hi @Annette77, as others have said our cancers are treated uniquely. I agree with @Abbydog about one step at a time as it is all so overwhelming really.  I did know the whole treatment plan but I focussed on the stages of treatment and gave myself little treats as I completed each one. For me that was a couple of nights away. 

 My BC lump was 2cm. I did loose my hair during chemo ( day 17) and it started growing back in about 6wks afterwards. I actually shaved my head after the first chemo session.

I discussed the cold cap with oncologist and nurse but ultimately it was my decision to not use it. I really can't handle the cold and I had a very very thick mob of curly hair and I still do post chemo.

 I am neatly 60yrs old  and I was just retiring on my diagnosis ( aged 58) so I didn't work. I was glad not to be working as I just really needed to focus on me and healing. I had been through alot prior to BC so it was time to just stop. I also was glad to protect myself from other infection risk during treatment. 

I never got sick during chemo. I was nauseous for 1 day only and took medication for that. I walked daily during chemo but I did have days when that was hard because of fatigue but then I found i actually felt better after a gentle walk. I also saw an exercise physiologist on recommendation from the oncologist and it was a once a wk 45min class with other BC ladies. It helped and was nice to connect with others.

My BC was hormone positive too and HER2 negative. At the moment I take tamoxifen but I think my oncologist wants me to change to AIs. I see her again in 4 months. 

I can't say treatment was easy but I got through it well and I am ok. I am happy to answer any questions you have.  Hopefully whatever treatment is next you get through them well.  Best wishes 

Dear @Abbydog,

Thanks, this is very helpful. I was planning to need the rest of this year for treatment or to recover from treatment. Luckily I’ve been in the public service for many years and haven’t been sick much and have 8 months of accumulated sick leave. I’m planning to work part-time and use my sick leave for the rest of the time to cover the year. I can work from home and my manager has agreed to me doing that as long as I need to. I don’t know if I have income protection insurance and will check. I probably have to use all my sick leave first but it would be a good back-up.

I have read about cold caps but I didn’t know if they are used in Australia. I’ve added a question on cold caps to my list.

I check my breasts regularly and didn’t find the lump. It was found in a routine mammogram. I’ve been upset with myself for not finding it but it might have been too small for me to realise it was a lump when I checked a couple of months before the mammogram. I have dense breasts so parts of my breasts feel firm normally.

I’ll probably have more questions after my specialist appointments. All the information I’ve gotten on this forum and the website has really helped.

Awesome info there, @Abbydog - specially about the Income Protection - a great idea at making it 'work for you' - cos that's why you're paying it.  If you are able to access that, it is a great way of just concentrating on your treatment & recovery ....
If you find that you are going OK & missing being at work ... I am sure you could work something out with your boss - part time or working from home, maybe?  ;)

@Annette77 - depending on what chemo you have, you may not lose any hair!  My husband's first lot of chemo for 9 months didn't have him lose any hair ... but sadly, the 'new stuff' he started in Dec, resulted in losing 3/4 of it - but he can still make it look like a Mohawk, the way he 'plays with it' - it looks quite cute on an 85 year old!  ;)  Fingers crossed, you keep yours xx

take care xx

Dear Annette77,
Try to take it one step at a time. It is difficult, as you want to know everything.
My cancer was 3.5 X 5cm, and spread to some of the Lymph glands. 
I was Stage 2 and Grade 3, hormone sensitive.
You and I are lucky to have found our cancers relatively early.
Being Grade 3, means fast growing. I had a Mammogram 9 months prior to my finding it myself.
I'd like to tell you that not everyone has a terrible time with Chemo and R/T.  I had no nausea, perhaps I was lucky.
You may not need Chemo.
If you have Chemo, you could ask to use the Cold Cap, so that you may not lose your hair. It worked well for me.
I possibly could have worked during Chemo, but I didn't want the stress of deciding if I was fit for work each day.
Or the exposure to Covid and other infections.
I used my Income Protection Insurance that I had within my Superannuation. You may have this available to you.
I was off from diagnosis, thru Mastectomy, Chemo and R/T, almost a year.
I don't know if any of this is helpful. Please ask any questions.
Others may have already said, write down your questions as they come to you, for your Drs and Breast care nurses.
Hopefully your treatment will not be too extensive.
All the best.
Keep in touch.

Thanks for sharing your story, Cath. It makes me feel much more hopeful. I was expecting a much more gruelling treatment program because of the higher grade.

How large was your tumour? Pre-surgery, mine was estimated to be 3cm, made up of a 2.14cm lump and a long ‘spike’ invading the tissue next to the lump. Did you lose your hair from the chemo? Were you able to keep working through treatment or were you too tired?

I can’t wait to start exercising properly again. I increased my exercise after diagnosis to improve my fitness for surgery and I really miss being able to do the online yoga and HIIT classes because I can’t do weight bearing or vigorous exercise yet. I started a healthy diet 2 months before diagnosis and was feeling positive results in more energy, no more sugar cravings and weight loss, and I’ve kept that up, despite finding cooking quite tiring since the surgery.

Hi Annette,

I had the same result as you. Margins clear, nothing in lymph but grade 3. I had 4 months chemo, one month radium and now take tamoxifen. They got mine early so my oncologist is positive about my future and so am I. 

I was diagnosed 30 April 2020 and my active treatment Finished 30 October 2020. I am due a mammogram next month but it's 2022 and I am here with no evidence of disease so far.  

I exercise daily, eat well and cut the alcohol down. I meditate daily and do pilates as well.  I cried for 2 weeks when I heard about my diagnosis but nearly 2 years down I feel good. Best wishes on your treatment. If you Have any questions feel free to ask.

Hi @Annette77
Great news about the clear margins and absence from the lymph nodes.
I think many of us can relate to the “good news/ bad news “ scenario.
I found I had to stop comparing myself to people who only had a tiny tumour and could get away with a lumpectomy rather than my mastectomy and just roll with the punches.
I did see a  psychologist  for a couple of sessions after my mastectomy and one of the best things she said to me was “ it’s ok to cry”.
Early on I cried at random times and events but over time it got less and I rarely do it now ( almost 18 months after my diagnosis) and when I do it’s usually in the  privacy of my own bedroom.
Great that you are taking someone to your appointments - I took my husband and he absorbed a lot more of what was said than I did!
Take care.

Well done YOU @Annette77!!  The Squeaky Door & all that!   I hope it wasn't too confronting getting the info over the phone and crying was definitely a normal reaction, even cathartic!  Definitely ask about recording the appts & also  ask for printed copies of everything (pathology etc) and get a box ready at home for storing everything (an expanding file is not big enough, I've found!)

Write down all your questions (I do it on the computer, as they'd never read my writing!) and I give THEM a copy, as well as my own copy in front of me .... I leave spaces for taking notes of the answers ..... and don't leave until ALL your questions have been replied to!  

Take care & all the best with your appts in Feb 2 xx

Thanks, everyone. I’ve been telling everyone who will listen at the hospital how anxious I’ve been feeling and how much I would really appreciate getting results when they are available. It worked! I got a call late yesterday from the surgeon’s fellow, who had finished his placement but called because he said he knew I’d be anxious waiting. He was very kind to do that.
There was good news - they got all the tumour out (clear margins) and the lymph nodes were negative. But there was bad news - it’s a more aggressive faster growing cancer (grade 3). That was a shock I wasn’t expecting. I’ve been doing a lot of crying. My prognosis is significantly worse and I’ll have a more aggressive treatment program. But at least I’m getting my crying out of the way and dealing with the shock before my appointment next week so I’ll be able to listen to what the surgeon says and prepare some questions to ask.
I’m taking my 30yo daughter with me to the appointment and I’ll ask if I can record it on my phone. I think I’ll be referred to a medical oncologist to discuss chemotherapy and the results of genomic testing of whether chemo will help. I think they might also be doing genetic testing to find out why my cancer is aggressive, despite being ER+, PR+ and HER2-, but that will take months to get results.
Good luck,@Fernweh. I agree it’s important to be assertive. A few tears might help too. And thanks when someone takes the time to give you information.
I’m planning to tell the surgeon, who I’ve only met for 3 minutes, that I do better with time to think about things and more rather than less information. It must make it easier for the surgeons and other doctors to have patients who aren’t highly anxious and stressed and not taking in what they’re told.
Thanks for the link to questions, @arpie.

@Annette77 I hope you get your results back soon.

I too feel like I am not part of the decision making and whenever I spoken to my surgeon (except from first appointment, over the phone) she made me more anxious as she just did not give me all information at once.. keep pushing for the answers you need. I know I will be more assertive with my next steps..

Take care