Went for my results Wednesday and was told they found cancer in the lymph gland. They gave me two options:
Leave the nodes in and have chemo and radio which should get rid of any cancer, that can not be proven tho. Or
Remove all nodes and still have the chemo and radio. That way all the nodes can be tested.
This was not the answer I was expecting at all as all the way through I was told chemo would not be necessary 😔
I have gone for option 2 so now a million new questions in my head specially re the chemo. I have been told of the ice cap to prevent hair loss? Any advise? When does the hair fall out? Sickness? Work? Any advise is appreciated xxxxxxxx
Love Gitte
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Gittelarter
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I'm so sorry to read you now need to have Chemo too, it's a bit of a blow when you weren't expecting it, sadly it happens; I went from them saying Lumpectomy/Radiotherapy to Mastectomy/Chemo but the goalposts moved after the biopsy results.
I chose not to have the Cold Cap & lost my hair at Day15 as predicted by my Oncologist. The sickness is well controlled now with Antiemetic's both before they start the Chemo & when you get home, your Oncologist will explain all this to you.
I had already taken early Retirement, so work wasn't an issue for me, so some of the other ladies will advise you but l personally wouldn't have worked through Chemo if l was still working.
When do they plan to do the additional surgery & start your Chemo? I hope it all goes well Gitte, we can give you lots of tips & hints re the Chemo after your surgery.
Kazzerp has given you some great info here & has had a similar experience to what your now facing. It'll be good to get the next surgery over & then we can give you tips fir your Chemo, like Karen I got my wig ahead of time, then your good to go, mine started coming out on my Birthday & was all out the following day, so it was Wig on & go!
Did they tell you the type of Cancer, do you have to have follow up Meds after?
Hi Gitte. Sorry to hear your news , however if it's any consolaction I had the same diagnosis and options .I had a mastectomy and results were that margins were clear but sentinel node and 1 other node they removed we affected. I was , like you , offered several options. It's bad enough processing the news but to then have to make clear decisions about treatment is very hard. Anyway I wanted to avoid further surgery if possible and was told there was no need to make a snap decision so opted to get the chemo done first ( in my head this would zap anything left in the lymph nodes too). I had 3 EC and 3T sessions. It was tough but absolutely doable. I did have the luxury of not having to work though. I didn't cold cap and my hair started to fall out at 15 days or so. I already had my wig sorted so my hubby shaved my hair off as it was getting on my nerves as it came out. I finished my chemo 3 weeks ago and after much more soul searching and discussion with oncologist and surgeon I have opted now to have op fir Tnc on 28th Feb . I need to know that they have removed everything. To not have the op and just radiotherapy means you can never be sure . It may well be fine but I need peace of mind. If after the op there is still some cancer then at least I now what I'm dealing with . Google the POSNAC trial. This is were they put op against just radiotherapy but have not yet had enough positive results to recommend as policy. Anyway just realised I've ranted on a bit!! Main thing is to stay positive , take each day at a time during chemo, and know there is light at the end of the tunnel. Plus loads of ladies on here for support. Good luck Karen xx
I had the ice cap everttime and I saved the hair on my head however u will need to be brave for the first 10 mins they turn the machine on as the is freezing I think runs at minus 5 but after the initial 10 mins u will be fine , I'm glad I had it as diagnosis is bad enough without losing hair good luck chick on your journey xx
Hi I kept most of the hair on my hair did goes a little things in places but mostly kept it ... it doesn't stop you losing eyelashes and brows ( I only lost a few ) underarm hair all disappeared which was a bonus and some down yonder lol .... good luck with whatever you decide hun i wish you well xx
Thanks, I used the ice cap and finished in Jan but my hair is still shedding and wondered when it will stop as it's very thin in places and seems to be taking ages to grow back. Did that happen to you. Also how did you cope with the thin patches?
Sorry to hear about your diagnosis. I think that I would have gone for your choice. I was already retired but I don't think I would have wanted to work during chemo especially as there would be more contact with people and more likelihood of infection
I certainly saw people but not if they had a cold, sickness etc. I always had gel available when anyone came to visit and have a big rather than kisses
The cold cap was not an option when I had my chemo but think I woukd have opted for losing my hair. As soon as there was any evidence of hair falling out, I had my head shaved and the wig was ready to use. I didn't use it all the time - mainly used bandanas
Good luck with your operation and treatment and do come back to this site if you need any help or want to have a moan!! xx
I am already off sick and once treatment plan is discussed, i will be taking sick time off from work if it involves chemo which I have been told it probably will. Cannot afford to get ill during chemo. Isn't that when we need to be home?
Sorry to hear all this, I have yet to have these discussions as I have only been told unofficially last week about the cancer. Treatment plan discussions start this week and I'm praying it's minimal cancer and minimal treatment.
If it's any consolation Gitte, I have a stressful and public front line job and I cannot even think of work now, it's all about my health. Good luck and I am sure it all works out for you. xx
I didn't cold cap purely for the reason that it adds time to the chemo session and I didn't want to give this illness any more time than I had to. On another note, I can highly recommend ringing the McMillan nurses for financial advice whilst you are having treatment. You may be surprised at the help you can get
Hi Gitte. I too found it hard to understand why the goalposts moved but I did understand eventually, after asking lots of questions.
I'm 11.5 weeks post mastectomy and 2 chemo treatments in. Im not working thro chemo as my job is very dirty. I declined the cold cap as didn't want a banging headache nor did it guarantee to stop hair loss. My hair is still shedding, it began to come out 3 weeks ago, just over 2 weeks into my first chemo cycle. It's bald in patches, grey and dark in others and went streaky all over at first! I wear a cotton beanie to bed to catch the night hairs!
I felt sick for 3 days each time, I took the anti puke meds as advised. I was sick once, 5 hours after 1st chemo. I consider this manageable.
2 massive tips: DRINK LOADS! Try and drink 3 litres of water a day thro chemo, especially the day before and 4 days after. I have constipation & drinking 3 litres of water a day really helps with that (plus my laxatives). If this happens to you tell the hospital, they will arrange meds for this.
STAY WARM. I am used to cold extremities and being cold when being cannulated for chemo - if you don't get a picc line - can make it painful. Wear gloves, wrap a shawl or big scarf around you during treatment, don't leave your arm exposed. Ask the nurse pre cannulation for warm water over your hand and forearm, and then get them to put a heat pad over the vein.
My forearm vein is tender since my 2nd chemo. The ONCO doc suggested voltarol gel on the skin to help with this. I've got some but haven't used it yet. Again, if thimshappens ask the hospital for their advice.
Don't stop asking questions! Ask us, your hospital, the nurses, oncologist, Macmillan, your breast care nurse. I also found cancerresearchuk and brestcancer.org websites helpful.
Do try and find complementary therapies near you. So far I've had one complementary therapy and wish I'd asked for it / them sooner. I contacted The Haven online and got a DVD called the haven at home which gave me a mindfulness technique which has helped a bit.
Sorry for waffling! I do hope this helps you. Wishing you well Gitte xxx
Thank you, lots of brilliant advise. I don't think I'm going for the ice cap as I can't even wash my hair in cold water without getting a headache lol. I am going wig shopping at the weekend so I'm prepared. Is the wig easy to look after?
The wig is very easy to look after. Youbwill be given instructions on how to wash it etc. but, if I remember rightly, you was it in baby shampoo. Shake it and dry it on it's stand. It goes back into shape easily. It is 6 years ago since I needed mine so that's why I am a bit hazy remembering details.
I only used the wig when I went out anywhere special. It made me too hot at home. There are plenty of bandanas available now. A lot of the time at home I stayed bald as it as cooler
Good luck with your wig shopping. I quite enjoyed trying on different styles xx
Gitte it would be remiss of me not to say that everyone reacts differently due to differerences in our own physiology amongst other things including what My oncologist called our toxicity profile. So do be guided by the hospital.
We will always be here to share our experiences etc take care xxxx
Good morning and sorry for the late reply, I've been so busy. I had my first chemo 10 days ago and are so surprised how well I am. I've carried on full time and all no signs of my hair falling out. Just wondered if I might be ok re the hair? Hope you are keeping well.
Hi Gitte, it stopped thinning as soon as the treatment stopped. It took about a year to get it back to a kind of normal. It grows in gradually and you can see the shorter bits through the existing hair .. my friend used it as well and her hair didnt thin down as much as mine !!
I am at work and I refused the ice cap as I get migraines... everyone's treatment gives different reactions ... I've had 2 cycles and my hair started to fall out after the first about the 3rd week in ... its hair it will grow back and it is rather liberating not having any 😊... first week I'm tired and heart burn 2nd week I feel better 3rd week bing I'm me again ... positivity and a sense of humour is required ... if you can laughter at your self you will cope ... I'm bald and have hats and scarves to cover me for 2 weeks before I start again lol 😂 🤣💕💕💕chin up babes we can do this xxxx
Gittelarter
Hi Gitte
How are you doing? Have you been wig shopping yet? I'm having a new one delivered tomorrow, got the Anniversary Cruise on the horizon & think I needed a new 'Do' 💁🏻
The wigs now are really easy to look after (that's why they don't recommend 'real' hair) the wigs really are Fabulous now. I even shocked the BCNurse when I went for follow up, I said excuse the hair as I whipped the wig off before I took my top off, she actually squealed, she thought it was my hair! 😂
You just wash it in Special Wig Shampoo (low lather) rinse well & put on wig stand to dry over night then brush back into shape with wig brush. I really love mine which is just as well as my hair's not growing back very thickly, it's a bit sparse but dark as it was just a little grey at the sides, not bad for 61
Hope you are well, I'm sorry I haven't been in touch just been so busy now back at work full time. I did get my wig but it's still in the box. I had my first chemo 10 days ago and can honestly say I feel okay and have been at work every day, the hair has not fallen out either 👍
Good to hear from you & well done being back at work, take it easy though. I'm glad you're doing OK on the Chemo & your hairs hanging in there.
We're back from our Cruise to the Far East which was incredibly interesting, we've just about washed/ironed & put everything away, seems to take forever.
Very Good Wishes for your next Chemo & hope it all continues as it's started.
Love Angela xx
Sorry about your news. I tried the ice cap and hated it. I lost the hair anyway (almost straight away). There are pros and cons to working. Obviously work can be a distraction but it can also be stressful. If you work with others they are a potential source of infection when your immunity is lower. Being on chemo can make you tire very quickly, is there potential to step back or reduce hours? Personally I chose not to work, I decided I needed all my energy for dealing with the treatment. I think i would have chosen the same option too if I had been asked. Wish you well for your treatment, sending hugs.
Thank you for your reply, it's such a big help to hear from others with their experience. I still don't think I will use the ice cap as don't fancy anymore pain added. As for work, mentally I still don't want to go back but financially I have to as not sure how long they will carry on paying me, but I am worried about the chemo and how it's going to affect me. It's just such a "mess".
Did you wear a wig? If so did you go for real hair or synthetic as I've heard good and bad about both? Has your har grown back? If so how long does it take for it to come back?
I gave up work and I'm glad I did. I couldn't have done my job while I was having all the treatment. I had a synthetic wig but I found it very hot especially with the flushes! Most of the time I wore a scarf and big earrings. I don't know why but the earrings seemed important. My hair started growing as soon as treatment finished. It came back finer and curly, also grey! Nevertheless, I was pleased to have it! Ask me as many questions as you want. I absolutely bombarded people when I was on your journey. You need as much info as possible when you have to decide things. Take care Gitte. Xx
I don't post often, but wanted to add my 5p's worth...
Re clearance, I had one positive node after my sentinel node biopsy (had multi centric bc in left breast, 2 separate areas and Pagets too). I wasn't really given a choice tbh, my consultant (who is fabulous), was very matter of fact and said he believed for me to have peace of mind that I should have a clearance plus chemo was given the choice for radiotherapy and decided to have it as wanted to feel like i'd one everything possible. So had 6 rounds of FEC 100. I cold capped , have to say was painful and prolonged the day, but personally am glad I persevered. I lost lots of volume and had a couple of thin spots but after i finished chemo my hair grew back very fast and filled in the thinner spots within weeks. now is incredibly thick and extra curly (was curly before but it's wild now lol). If you fancy trying it maybe see how you get on? .. if you don't like it you can always stop...
My Chemo was doable, I had GCF injections and luckily was given Emend anti sickness. Life sort of goes on hold for those months and they become three week ones instead of four. I played netball on my third week and walked my son to school every day, a personal victory for me. I felt pants the first week then gradually started to feel better. Tastebuds were shot for a while, everything tasted odd, only nice thing for me were very salty crisps and chips.
It does feel overwhelming for a while, tears would come out of nowhere (still do at times!), my advice, listen to your body if you need to rest do it, if you need to cancel stuff last minute, do it. Eat what you fancy, enjoy the odd glass of prosecco (saved my life!), laugh when you can. Dark nail varnish is a must, and keep your skin hydrated as mine dried out loads...
Good luck with the op, I had one last Friday (my temp expander sprung a leak so had to have it replaced!), you still have time to make your mind up re the cap. Look at the Paxman Coolers website, very informative lots of reviews and tips from patients plus if you have any questions they ring you back very quickly atb, Nix x
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