Have had my surgery ANC and WLE been back today and only 1/15 nodes positive and had clear margins. 😊 Waiting for oncologist to tell me when and what chemo I’ll be having. It’s been such a whirlwind the past few weeks. The genetic test came back negative and I have no risk factors apparently am just unlucky! Having my hair cut short next week. Think it’ll be less traumatic as was told today I will lose my hair but could try cold cap if I wanted too but have heard mixed reviews about that. At kest it was good news today.
Very glad that you have a plan. It is a lot to take in and it is a relatively long haul. All the different elements to think about is scary. Hence the mantra to be repeated.... One Step At a Time or even OSAT!! 🤗.
I went through the long course as well. I first went to breast clinic mid Sept 16 and diagnosed fully mid Oct. I started my treatment in mid Nov 16 and last herceptin was March 18 with my last planned Zometa Infusion being Jan 2020. Treatment plans can change a little as we go along as well.
Going through all this and another thing lands on your doorstep - ovarian cysts. Are they just going to check them for the time being before diving in. I had a couple many years ago. After quite a time of watchfull waiting, they eventually disappeared. Fingers crossed you don't need more procedures.
How lovely that your daughter is knitting hats. I used the cold cap even though it did not stop me losing my hair. I got a wig but never wore it. It is still lying in its box unstyled. I just wore ordinary hats and as it was winter, once I had my hat on it all looked very ordinary. I managed to retain some fringe for quite a few months even though I had the rest of my head shaved. After my head shave I also used to wear a liner hat (sleep hat from Annabandana) under my other hats for warmth, to stop them slipping off and also for height. They were great for sleeping in as it could get a bit chilly!
Anyway SJ, did they give you a surgery date or do you have to meet the breast surgeon first to discuss?
Just wondering as well if you may be interested in Breast Cancer Now's Someone Like Me Service. They could try to match you up with someone who has children and has travelled a similar path to yours. You can ring the helpline to find out more.
As always SJ, best wishes to you and your girls,
Chick 🐥 x
Thank you for thinking of me. I am having surgery first then chemo followed by Herceptin and pertuzumab for a year. Feel better now I have a plan but was shocked by length of treatment. They’ve found cysts on my ovaries so may her them removed as well. Bit scared but want to get going with treatment now. My daughter is a knitter so she’s busily knitting me hats. Think it’s helping for her to do something practical!
Hope your appointment goes well tomorrow and results are all in so you get a clearer indication of what is happening and when. Lots of 🤗 to you,
Chick 🐥 x
Last time round I was really lucky and walked out of my first appointment with surgery booked so mom ew exactly what was happen. Still seeing oncologist next week so hopefully will be able to ask the questions I need to. My daughter is coming with me because she doesn’t think I listened at the other appointment!
My other daughter’s 6th form are great and she has good relationship with her Tutor as well as a lovely supportive group of friends.
My Macmillan nurse is great so do have support but like you said it can be lonely.
I really feel for you going through pre-treatment waiting game again. I won't pretend it is not one of my fears, and a fear for many of us I would assume. I hope you can make use of direct support services in your area to help you and your girls if you feel it is needed. How is your daughter now? Did she manage to talk through her worries and fears with you or with another trusted adult or even have other ways of positively expressing her feelings through art or a diary etc? Do you have someone who is clued up and who you can directly talk things through with other than your daughters?
Really glad to hear about your clear bone scan. It may not seem like it but it is good that they are being thorough even though it must seem like it is prolonging the waiting agony. No point starting to treat is they are not clear about the full diagnosis. I don't what it was like for you the first time regarding time line for diagnosis and treatment but I was about 8 weeks from my first appointment at the breast clinic to first chemo and at times I could have climbed the walls so to speak whilst trying to retain the normality of life. I suppose one way of trying to deal with it (and not saying that this should be anyone else's way) was to research treatments, effects and put any preparations in place just in case needed. Your workplace sounds really good but yes maybe being in that environment, especially the first week and a bit after chemo may not do you many favours and you need to do what is best for you.
Do you still have your appointment with Onco on the 17th? I had the most helpful and patient Oncoman, hope you get an approachable one too. I hope your ultrasound will have been done by then and the full results are in. Fingers crossed for you SJ x
Best Wishes as always,
Thank you for your kind words. You seem to be able to say the right thing.
Had my scan results bone scan all clear but CT scan has shown something in other breast (one I originally had cancer in), thickened womb lining and nodule. They aren’t concerned about nodule will just rescan it in 3 months. I knew about womb thickening as had tests 3 years ago but they want to re ultrasound. I was told Tamoxifen can cause it. Also going to ultrasound other breast even though mammogram was clear. So more waiting. I just want to know and start treatment. Macmillan nurse said CT scans often show up things but hasn’t stopped me freaking out. My youngest (17) had a melt down about it all as I think it’s suddenly become real for her and like me the waiting is becoming unbearable.
Work are being great but I’m not going to be able to carry on once treatment starts as I’m a nursery teacher. I did ask but was told being round 3 and 4 year olds was not a good idea whilst having chemo! At the moment it’s helping to keep me going as there’s no time to think during the day.
I know it can be such a worrying time waiting for the scans and results. I probably had my first near meltdown waiting for the CT scan results etc. It can all start to feel a bit snail like when you just want to get going and know where you stand. I think we can also start noticing aches and pains that we probably would not have thought about pre diagnosis and it can all start playing on our minds.
Good for you that you are continuing to work and that you have supportive employers. I hope they continue to be supportive throughout your treatment. How are your girls doing? Hope your youngest daughter managed to be a bit more accepting of open discussion about it last week.
Anyway I just wanted to wish you all the best for your scans this week. Be kind to yourself!
Thank you for your advice. I’m
going to take all the help I can get. Last time I didn’t as I felt a bit of a fraud only having radiotherapy. Now have CT scan and bone scan booked this week and oncologist appointment on 17th. Very scared about what they will show as have way more aches and pains than I did last week. Trying to keep busy by being at work who have been incredibly supportive and bit to think about what is to come. Taking one day at a time.
That is good that the cancer seems small. It is good that you were being so vigilant and noticed it. By coincidence, I also found mine by self examination, although it was like it came out of nowhere considering I use to have a frequent feel. Yes I had chemo first because it was HER2/grade 3, but also because being relatively small chested they thought it may shrink so lumpectomy would then be a definite option. Well the chemo did it's job but to cut a long story short, I still ended up with a mastectomy. On the pathology report it was classed as a complete pathological response meaning no sign of cancerous tissue detected so I could not really ask for more from the chemo. I think that is one advantage of having it first in that you can see if it is having an effect. But there are pros and cons to all things and we need to have what is best for our individual circumstances.
I also kept things relatively close to my chest (oh dear - now there's an unintentional pun). Even when surrounded by people it can still feel like a lonely journey. Most family were not informed until the day before I was due to have surgery about 8 months after diagnosis!! I did make use of BCC phone support, Samaritans, etc. I found it easier to offload to people I did not know in the sense that it was "burden" free and I could be more open when I was having an emotional meltdown, which I needed to have now and again. I think I would have been in a less healthy place if I did not have those outlets to dip into as needed as well as a couple of close people who were aware.
How lovely that you are planning a day out with your girls tomorrow and I hope you all have a great time doing things you enjoy.
Best Wishes to you,
Thank you. My daughter was great she’s very black and white and concentrates on the practical side of things unlike me who’s a bit more emotional!
They’re not sure if to do chemo or surgery first as my cancer is 16mm so small and think they’re waiting for staging results before making decision. Did you have chemo first? Have said I’ll do whatever they think is best as I trust them completely. Have an appointment with oncologist to discuss chemo so hopefully come to decision then. Planning day out with my girls tomorrow and going to forget all about it. I didn’t use any support last time just tried to deal with it all on my own and realise that was a mistakeX
So sorry that it was bad news for you and that you are having to face this for a second time. It must be such a lot to take in and get your head around again. Must have been difficult for your daughter too so well done to her for being there with you.
I hope that the genetic testing will not take too long so that you know which way surgery will go and also the potential implications for your daughters. I really hope the scan appointments are arranged speedily and you can get on with treatment. Have they suggested chemo first by any chance? I was triple positive as well so all thrown at it so to speak so I can understand a little bit.
Well as you can see all the various sections on the Forum and all the support available from Breast Cancer Care for you to use if and when you need. Best Wishes to you SJ,
What a day! Have cancer again grade 3 HER + and progesterone and oestrogen + in one lymph node. So because of my age am having genetic testing if positive will have double mastectomy and lymph node removal or if negative lumpectomy and lymph nodes removed. Definitely having chemo and Herceptin. Being sent for bone and CT scan for staging. Trying to stay positive scared for my girls as implication of it being genetic are huge for them. My daughter who came with me today (22) was amazing. More waiting and praying results are good.
That is great that your daughter wants to, and is coming with you. A lot for her to take in as well, I am sure you will look after each other. Sincere best wishes to you all,
Chick 🐥 x
Thank you for your support it meant a lot to me. My eldest daughter is insisting on coming with me on Thursday. Last time she was 17 and I wouldn’t let her come to the clinic with me and I don’t think she’s ever forgiven herself or me for me finding out the news it was cancer on my own. I’ve just got to get through next couple of days and then I’ll at least know what I’m dealing with.
Fingers and everything else crossed for you sj, I can’t add to chicks very wise words except to say I’ve had both good and bad news over the phone with melanoma I had 6 yrs ago and the bc I have now and a scare or 2 along the way. There doesn’t seem to be any rhyme or reason to it.
The waiting is the absolute pits tho xxx
I was so hoping that you would have had your results by now. Just try and take it one step at a time and deal with what you know at this time. I am really not sure if they would have told you over the phone if the biopsies were benign; even benign situations need a detailed explanation and treatment at times so I would not jump to any final conclusion based on that. Did you ask the nurse for any details during the call?
If it is bad news then you will deal with it because you have to for the sake of yourself and your girls. We all have to be vigilant about these things and not bury our heads in the sand which is exactly what you have done and are doing in facing it head on and getting it checked out.
Try and keep hold of the good thoughts like the positive results of your recent bone scan. I can empathise with you regarding going through the recurrence nightmare. I ended up having nuclear bone scan to check for recurrence last May after chronic issues with hip and leg. Fortunately all clear at the time but the waiting for the scan and results was really pants.. Then I was also checked again at this time last year, two years after initial diagnosis and ended up having US, and fine needle job again. It was like deja vu....Thankfully I got the results during the appointment that all was clear and my lump is a small chronic seroma and the other suspect bits were damaged tissue. Of course I had prepared myself for the worse in both situations with all scenarios covered. That is just me and how I deal with things in an almost ambiguous self protective manner i.e. if it's bad news then it won't be that great a shock!!
You can obviously come on here and talk about things/share your worries or use the BCC support as stated in my response below. However, is there anyone you can share your concerns with directly like a close family member or trusted friend. It is not the greatest time to be alone. Is there anyone who could attend the appointment with you?
There is a forum member called Lady Bowler and she always used to attach a picture of a pair of gigantic knickers when responding to people worrying about results appointment etc. It wasn't to say to people that they should be more mature (the usual meaning of "put on your big girl's pants") but more that there were lots on room in them so that all the other forum members could fit in to support the person at the time. So when Thursday comes, just remember that and visualise the support from myself and others in spirit.
Sending Positive Vibes,
Thank you 😊 I was phoned by Breast nurse yesterday asking me to go to an appointment at Breast Clinic on Thursday so I’m guessing it won’t be good news otherwise they would’ve told me on the phone wouldn’t they? Been trying to keep busy and not over think it but easier said than done!
Hopefully someone will come along who has teenage children and can give better advice.
So sorry to hear about your situation and that you find yourself in the nightmare waiting situation again. I hope you have your results now and that these were benign.
Breast Cancer Care have a number of booklets advising about discussing situations with children, family and friends. It also gives indications about what the responses may be. Being angry and not talking would appear to be a recognised response. I have attached a link which I hope is of help to you. https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/talking-children-about-....
You may also find it useful to contact the Breast Cancer Care helpline and ask about the Someone Like Me Service. If you have a Cancer Support Centre in your area like Maggies or similar then perhaps you could drop in there support too. It is a lot to be coping with on your own.
Best Wishes to you and your girls,
Chick 🐥 x
P. S. Personally, my opinion is that I would give any consultant a dressing down for calling any cancer a "good" cancer, even though I know what they probably meant by it! 😎
I was diagnosed in Dec 2014 with what consultant called a good cancer. I had wide local excision radiotherapy and put on tamoxifen. No lymph node involvement. Regular mammograms were all clear. In June was sent for bone scan as had shoulder pain and that was all clear. Waso happy. Three weeks ago found lump was fast tracked seen at breast clinic Monday had two biopsies one on lump and one dodgy lymph node. Now waiting for results.So scared for my girls that it’s back. They were 12 and 17 last time now 17 and 22. Eldest going back to uni this week and youngest in last year of A levels. She’s very angry and won’t talk about it. Don’t know how to support them especially as I’m single Mum. Haven’t slept last two nights as keep thinking the worse hoping for the best.