I have no idea yet what type of surgery I will need. Forgive my ignorance, I still need to look into all this. Does your surgery mean there is never the option of reconstruction for you? If it has been a success then that is all that matters xo
@sam3 i do have the option of reconstruction in the future but it may have to be under private as there is long waiting list for NHS especially as itās not an essential surgery. Iāll see how I feel after treatment finishes as will also need radiotherapy after chemo.
Hi Iām 45 and was diagnosed in May this year with a Grade 2, EER/PR +ve, HER2 -ve cancer. Ultrasound of the axillary nodes was clear but unfortunately I had 2/6 sentinel nodes involved at the first surgery so I proceeded to full axillary node clearance on 21st Aug. Thankfully only one more node was affected, so that was a total of 3/29. Iāve seen the oncologist and will be starting EC/D chemo next Wed. I was offered participation in the OPTIMA trial but decided against it as I was afraid of not being given chemo, after the oncologist had said the standard treatment for someone like me is chemo, and NHS predict showed a potential 9% benefit in 15 year survival with chemo. I have one 6 year old boy so can identify with all you ladies wondering what and how to tell your children. He knows I had a āsore thingā removed and that Iāll be getting āpowerful medicineā which will make me feel sick, tired, and leave me with a haircut like his dad Iām not sure he believes me about the hair but heāll soon see, I guess. I got my wig yesterday and itās definitely a lot less terrible than I expected, so Iāve decided not to get my hair cut short yet as Iād initially planned. Iām going to wait til itās nearly time for it to come out and then cut it at home and donate it to the Little Princess Trust. I figured it might be stranger to go from short hair (which Iād probably hate for the next 3 weeks anyway) to no hair and a long wig, so Iām skipping the short stage. Sorry this ended up long and congratulations if youāve read this far!!
Hi @pod123
I am also 45 and was diagnosed in May also with grade 3 pr/er+ HER neg.
I had my surgery in June with one positive node.
I am 10/16 through chemo (12 weekly pax and then 4 x EC.
I have been cold capping and feel generally ok and still have all my hair.
So I came on to say that if you decide cold cap you may not need to cut your hair just yet. But of course all regime as different as are we!
Your age and the fact we were both diagnose in May made me want to reach out!
Iāve not had a clearance through as I having radio instead after chemo. Xxx
Hi Camy this is the first post Iāve seen where someone has had quite a few lymph nodes removed that were cancerous. 23/26 of mine were cancerous and was told my prognosis was not good! How are you doing with everything ? X
Hi @kerrylou1 thanks so much for replying It really does seem like everyone has such individualised treatment plans. Apparently cold capping isnāt available here in NI (correct me if Iām wrong, anyone) so thatās not an option. The option of radiotherapy to the axilla instead of clearance surgery was mentioned to me in passing, but the team strongly recommended the full clearance. I did think it seemed a bit drastic, but I checked and it was in line with guidelines. Also, apparently the cancer was escaping out of one of the sentinel nodes so Iām kinda glad they took the whole lot and that Iām getting chemo. Itās a different regime to yours for whatever reason. Glad youāre feeling generally ok so far and thatās so great that youāve kept your hair. Hope the rest of your treatment goes well x
Hi @jules8 .
I am glad you found my post. If you click on my name, and scroll down you will find my all my posts about my experience.
At the beginning I want to tell you that this forum keeps me alive and all the worried and answers to my question I found on this forum. On the search bar you can write the key word and you will find info or someone else story, post about.
All the girls are amazing and supportive.
I am so sorry you are in the situation, and I totally understand you, but try to take a day on a time and donāt think what will be, be positive and listen your body.
Even you are a strong person this treatment is completely changing you and body, but donāt be scared, you will adapt quickly to all, just gives time to your body to cope with all.
Is important to rest a lot and drink plenty of water, I am not talking only, is true, water is very helpful, drink more than 2 l, no fizzy sparkling or juice, only water, and try to eat less or skip morning breakfast. Will help you with the fatigue.
I started my chemotherapy also in September 2023, December radiotherapy, and February I done. I had surgery in July. So this year in February I started the hormones block therapy, injection Zoladex every 28 days, to maintain me in menopause , and tamoxifen.
I am back to work from May, and all goes well. Medicine are giving some side effects but tolerable.
If you scroll my profile post you will find loads of details that will help you in this journey.
I am a positive person but I had also tuff days and moments, but everyone is the same,
Think that we all go through on this treatment and at the end you can start a new life, hopefully you understand me.
Keep chatting with the girls here and will help you a lot.
Donāt give up, in a year from the time of diagnosis I am back almost to normal, but trust me a years will be nothing to compare with your fellings at the beginning and when you done all treatment.
Take a day at a time and will be fine. Open a diary and write every day how you feel, thatās will help you on your next chemotherapy session. Any changes or anything you feel and is not normal must be reported to your oncologist or nurse immediately, that they can help you with the side effects. Trust me they already meet all the side effects and they will help you to get through.
I am sending you hugs and loads of good health .
Be strong and cry if you need, I cried to much, and now when I am looking on the back I canāt believe how much a suffered and how happy I am now.
I am alive and I donāt give up.
Hi thank you so much for responding to my post. You are an inspiration and I must take some positivity and strength from your journey. Iām 2 weeks post chemo today and feel fine physically at the moment but mentally still struggling but reading your post has given me a bit of a kick up the backside! My hair, eyelashes and eyebrows are fine but know this will change. My treatment is supposed to finish end of Feb so need to do something dramatic to get me through and stop worrying. Please keep in touch and will read your other posts.
Hi dear any time you need me I will be here.
Before my second session of chemo, I had every 14 days, AC, I start loosing my hair, falling in big parts, and I decided to trimmed off my hair, once you are knowing what the next step you will be fine, and I didnāt mind I have no hair, you will get the winter during your treatment, so hats will be in trend, I had a wig, but believe me I used only for appointments, and in the shops I earn a hat. Noone noticed, and who cares.
I been active, I had to drop my children at school, 3 pieces of them, to wake up to prepare the breakfast and many more, but I never give up. Donāt forget about your arm exercises, keep doing them and donāt worry if you are stretching the arm a bit, donāt let the corded to install, keep doing even you are tired and rest after.
Mind yourself and think next year on this time all will be over.
Pain will be there always where the lymph nodes was removed,but you can live with that. Donāt lift weights at the moment, if you did before wait till you finish your treatment, I am carrying my shopping bags to me car myself, I have no problem to lift heavy stuff.
I have a diary at home I remember each day after chemo session was different, first 3 with steroids was fine, then start to be tuff but I got medicine for and I was able to to some work around the house, donāt forget to write everything and to call the nurse any time concerned.
Big hug and good luck
Hi there. Thanks again for your kind and thoughtful post you are really helping.
My hair is still good at moment but still only first cycle second on 2nd Oct. I am dreading losing my hair but have 2 wigs and hair accessories, hats etc. yes good itās coming winter time I have quite a few woolley hats I can wear as well. Take care speak after my 2nd cycle xx
Hi dear,
Good luck for tomorrow, donāt forget to drink plenty of water today before chemo and tomorrow in the time of the session.
Avoid food before session as you will eat there , donāt forget to ask about anti-sickness medicine to have at home, and get one immediately you arrive home. Rest and drink, think you started this journey and not to long till all will gone.
Big hug let me know how you feel as soon are you available.
I got COVID yesterday, so I am home in the next few days, this is my first time tested positive, I went at work yesterday morning with sore throat and headache, and before I went in the children classroom I said better I test me and surprise . I was just start crying but now I am not to bad, no fever, only mild cough and muscle in painand sore throat.
I am back to my bed, after full 4 months at work , but I am still positive so donāt give up, is fine if you need to cries, or thatās for me to feel better?
So take care tomorrow
Hi Camy thanks for your post and useful tips will definitely follow ā¦ thought Iād feel ok about my 2nd one but still feeling very anxious. I saw my oncologist yesterday and he has told me I am unfortunately high risk of the cancer coming back due to the amount of lymph nodes involved. Is going to scan me after my 3rd treatment as I am so anxious. My hair is falling out mainly at sides just dread combing it. So sorry to hear youāve got Covid and really hope you recover quickly. Take care and thank you