May 2017 chemo starters

Are any of you having ovaries removed? I think it is something I will do I am seeing them again in six months time to discuss. My mum had breast cancer (she didn’t make it died when I was 11years old) her mum my nan had overian cancer at a young age sadly she didn’t make it either.
I had genetic testing about 15 years ago at oxford and didn’t have the BRAC geans but they did believe that there was some kind of genetic fault but without a living relative they couldn’t continue (now I guess I’m the living relative) I will be seeing the genetics team again next week. I have a twin sister so I worry so much about her as we are identical twins one egg split in2 two there for exact DNA so now I worry about her and my younger sister so maybe now I can help understand this genetics thing and we can look at how to keep them safer.
I do worry about ovaries and early menopause and consequences of that because I’m 37 but I need 2 do everything I can to prevent this coming back. I’m ER and PR positive

Same misyangel we do everything possible to protect ourselves going forward. It’s just such an ordeal more surgery and further ongoing consequences and possible complications but it’s all beneficial.
I get overwhelmed thinking I will never feel the same again but we will never be the same again but we will be alive and learn to be happy again and in the end be greatful. At the moment it’s all the unknown and reading up about potential risks etc so sounds scary but reality is never so bad
X

Braved the shave. My gorgeous husband has given me a grade 4 all over. I was aiming for sexy GI Jo thing. Ended up more cute patchy fluffy hedgehog. It is going fast now. I used half a roll of selotape cleaning it out of the bed this morning. X

My grade 2 shave yesterday makes me look ill but I feel well. Tomorrow is my day 5 which was bad on chemo 1 but so far with the extra meds I am doing ok. Woke at 4am until 6am but went back to sleep into 8am. Have to say wash n go showers are so time saving! 

 

Re ovaries. I am 46, my bc is triple neg so not hormone related. I have my children and  no longer need ovaries or periods in my life!Hoping chemo puts me in to permanent menopause but I really want ovaries out as ovarian cancer is a silent killer. Also want other boob removed. I plan to discuss this with GP after chemo finished and I am back at work so sick pay kicks in again. Had gene testing 4 weeks ago just waiting on results.

 

Hope you are all ok today.

 

Heather

 

I totally agree, I never took tablets or went to doc. Was not even on the pill. I have felt so much better second round. Have only had one day nap on day 4 . Aches have been managed with paracetamol and gentle massage. Eyebrows may be slightly thinner but I have a 1cm gap in my left lower eyelashes. It is not easy to notice as I wear specs but since I have pointed it out, my husband is mesmerized ? it looks like a fashion statement. Lol

Mai7, my oncologist said the same thing deal with one thing at a time starting with chemo then discuss next steps. So I don’t know much about my surgery or hormone treatments at the moment apart from the fact that there will be surgery and hormone treatment.
I’ve not had children yet but to be honest I’m 37 now and perhaps it was never on the cards for me but it’s still a bit upsetting knowing the choice has been taken away. Originally before the lymph nodes were found positive I was having surgery 1st and had been referee for egg preservation but when the plan changes and chemo was decided 1st there was no time. It would have delayed treatment by around 8 weeks and I was afraid of the delay so had to make the horrible decision and crack on without the preservation.

This morning my hair has started coming out if I touch my head. I know I have maybe a week or so of hair??? But my wig fitting is tomorrow I’m thinking just to have it shaved off I’m finding seeing the hair destressing and then imaging how it will look getting thin. Perhaps walking in2 the salon tomorrow and coming out shaved with the wig on and then it’s done no more obsessing or worrying about it??? But is it early will I regret it??
I’m only two weeks in of my 1st treatment.
I was thinking to visit work for a few hours Tuesday so woukd mean going in for the first time after two weeks off with the wig on?
I just don’t know what to do at the moment

I hung on to my hair until day 18 of first FEC then it just annoyed me and hurt. You will feel better once it has gone especially if you have a wig to use. I am not having a wig and just using scarves and hats. Around the house I don’t bother but keep one near the front door in case anyone comes unannounced!

 

I just felt that the sooner my hair went then sooner it would grow back as now just had 2nd FEC and so hopefully in 6 weeks when I go on to T it will sprout again.

 

Heather

Well done treehouse on braving the shave. I am going to get it done in about an hour’s time. Feeling really nervous now. You made me laugh re the sellotape. Just been doing my clothes but it’s pointless as shedding  so fast now.

 

Re ovaries If you can get drs to remove them and Fallopian tubes then I’d say go for it. Had mine done as keyhole surgery, went in the morning and home by lunchtime. About a week’s recovery period, think I took two weeks off work but that’s because I commute on the train. My mum sailed through menopause but then got ovarian cancer . It was found quite late and she passed away very quickly. However, we didn’t know anything about genes then

 

Now we’ve had BRCA 1 gene confirmed my daughter, sister and niece will be tested and if they have the gene  they want risk reducing surgery. For my daughter/ niece that will have to be later on once they’ve had families but at least they will be checked.

 

For triple neg cancer like mine the ovary removal protects you against getting ovarian cancer (up to 80% lifetime chance) although as the bc is not hormone receptive it doesn’t make any difference to the bc. With BRCA 1 the lifetime chance is 90 -95%

 

My sister who had trip neg bc 25yrs ago had bilateral mastectomies and ovaries out and is now 56. She had the " boob job" and “tummy tuck” combo and looks great!! So that’s what I’ve asked for! 

Just got to get through the chemo first.

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Oh WolfEE I really feel for you. There was a lady next to me at chemo who was 37 and had been having ivf and now diagnosed with cancer and said the same thing about now the chance of having children being taken away from her now

 

I know my niece is worried that if she has the gene she will have to make the decision re children/ ovaries out as she is 27 and her mum had bc at 29

 

Re hair It is so difficult. I still have quite a bit but it looks so awful that I’m hoping the shave will be worth it as trying my wig on made me look more like my old self. But I’m very very nervous. As Mai7 says it’s all coming out as some point so we’re just delaying the inevitable but it stills feels like the hardest thing to actually do

Not sure why my post said emotional content!! Didn’t realise I’d done that. It’s the imminent hair shave that’s getting to me ha ha

Big hugs Rosie, it’s such a tough thing to live with. I’m oestrogen positive and they have said I will be on hormone therapy after the chemo. I think I would rather have the ovaries out (I’m 43). I’d rather not be pill popping and I can’t use my AHCC immune booster with tamoxifen. Day 11 so no hair loss but have my Buff head wear from kayaking days. I wore it yesterday to keep the sun off my head although the first thing I grabbed out the bag was my son’s pants (he’s 4). Not the look I’m going for. ?.

I am wearing my wig (Ashley) my boys are smiling and hubby says I look like ihave spent a fortune having a cut and colour. Am I the only one who thinks its better than my own hair? Misyangel I know what you mean about the injections. I do mine at night as they were upsetting me in the day. Don’t punish your self about the pill. It did not help me! Wolfee don’t rush shaving. You will know when you are ready. I wanted to do it yesterday but husband kept saying he would do it when I was ready. I don’t think he was ready. I really had to persuade him this morning. You can just leave it. I found it sore and got so fed up with the mess.
I got my Head on the sand about surgery right now. I really wanted it first. Just getting through chemo. With great hair! ?

Rosie I didn’t know or had forgotten you were triple neg too, I don’t feel so lonely now!

Hi Ladies

Treehouse well done on wearing your wig…I hope it is comfortable for you…I don’t get mine till 21st which is after 2nd treatment so will probably have to use some hats I have bought by then.  Was smiling at the name for your wig…I had my appointment with prosthesis nurse on Friday to get my fake boob which my family are trying to name!!!..must say it was the best appointment at hospital I have had yet. Lovely nurse who checked my wound and was very impressed with how it has healed which is good to hear…as someone else said another surreal situation we find ourselves in during all this…I came away with my fake boob and a lovely bra for free and heaps of brochures for ordering more…I don’t think reconstruction is something I will go for …just need to get through this treatment.  I also was someone who took no medication or have ever been ill so I do find the hospital appointments and drugs all quite surreal. Enjoy your Sunday everyone x

Hi curlyh. Well went out for Sunday lunch with family and feel fab in my wig. I remember as a kid going strawberry picking with my mum. She also had a prosthetic left boob. As she was bending over it slipped out of her bra. She then stood up quickly and it smacked her in the face while trapped in her t- shirt. I still get the giggles when I think about it now ?

Love it ?. I have a softie since surgery. It fits in the bra pocket. Out one day it was quite sore so I took the softie out… forgot it. Next day I called my husband at work. ‘Have you seen my boob?’ ‘Yes, it’s on the car seat.’ ??

It’s a tough decision and so personal only you can take it. I decided against immediate reconstruction. The implant could’ve gone wrong with the chemo and radiotherapy. Even if it hadn’t, it would need to be replaced twice in my lifetime. With clothes on you can’t tell. The surgeon was initially surprised but post-surgery was relieved as the cancer was worse than expected. I just need to not leave the boob in random places…

My wig now has a name - thanks to my husband who says it looks like a trible from Star Trek. Trible it is then. ?

Tribble is great ?. Oh its a bit chilly when you take it off. X

Hi ladies, I’m looking for abit a reassurance. I’m having my line fitted on Tuesday and I’m really struggling with the thought of it. I’ve hardly slept for days now worrying about it. I know it’s going to be a gods send once it’s in it’s just the thought of the procedure makes me anxious. Those of us who have one already can I ask how you found the experience, any worse than a biopsy? I know it’s late and I’m hoping your all asleep right now but any replies in the morning would be appreciated.
Annie xx ?