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Does anyone has the same rare cancer as me?!

22 REPLIES 22
Maidenmummy
Member

Re: Does anyone has the same rare cancer as me?!

Thank you so much ladybowler, I hope you have a wonderful Christmas too πŸ™‚ xxxxx
Maidenmummy
Member

Re: Does anyone has the same rare cancer as me?!

Hello ladies.

 

Well today was results day, and i'm very happy to report my nodes were clear of any cancer, all 25 of them!

I was also told my Oncotype test result is 20, meaning my risk of recurrence is intermediate, which makes the decision about whether to have chemo or not slightly more difficult. I will be seeing my oncologist within the next few weeks to discuss this, but in my mind I have already decided that I will have chemo, as I want to make sure I have given myself the best possible chance.

 

In the meantime I am 2 wks post clearance, and getting better each day. I did develop a small seroma 5 days after having my drain removed, which meant another trip back to the hospital to have it drained, which was a massive relief, as it was causing me a lot of discomfort, and made my excercises very painful. I also have slight cording in my armpit, meaning my arm is tighter than it should be, but that should improve. I saw a Physiotherapist whilst at the hospital, and she was very pleased with how much movement I already have in my arm, which is great!

 

So for now, I am going to relax and enjoy Christmas, and try to forget about the C word if possible! πŸ˜‰

 

Lisa xx

VickiB7
Member

Re: Does anyone has the same rare cancer as me?!

How fabulous you have the date of your last radiotherapy marked on your calendar. Good idea about taking a week off. One thing I have learned through all of this is to be kind to yourself. I don't know about you but I always just get on with it. If I have a cold I taken medication and then just carry on. No more - health and looking after yourself must come first. Let me know how you get on. Vicki x
VickiB7
Member

Re: Does anyone has the same rare cancer as me?!

Hi Helena. It's great that you will get started with your radiotherapy soon - it means it will finish sooner too.

I don't know what the oncologist will tell me on Thursday- I will let you know πŸ‘πŸΌ

Vicki x
VickiB7
Member

Re: Does anyone has the same rare cancer as me?!

Hi Helena, 

 

never in in all my scenarios was there one where the lymph nodes were clear of cancer. I am still shocked (in the best possible way). 

 

When end was your operation?  Just wondering how long after the op do you get radiotherapy. I go to the oncologist on Thursday to find out about mine. I hope yours go well?  Did you have chemo? Yes, can't wait for 2017 but we are all starting it in a very positive way.

 

keep in touch and let me know how your radiotherapy goes. 

 

Take care. Vicki x

VickiB7
Member

Re: Does anyone has the same rare cancer as me?!

Hi Lisa, sorry to hear it was rough for you. I was on morphine for the first few days too.  Thank goodness too. I couldn't look at my drain - I had a little bag to carry it around it. I got my bottle changed as the suction had stopped but they didn't empty it each day. I'm glad your husband wasn't too squeamish - I couldn't have done it. 

 

I must admit it my arm is much better now - I can't believe it is three weeks on Tuesday alread since the operation. I am no where back to 'normal' but getting there.

 

i have an appt with the oncologist on Thursday regarding my radiotherapy. 

 

I hope you get good news on 20th Dec.  please keep in touch and let me know.

 

take care Vicki x

Maidenmummy
Member

Re: Does anyone has the same rare cancer as me?!

thank you Helena, I really appreciate your good luck vibes! πŸ™‚ Best of luck for your radiotherapy, I'm sure it will go smoothly πŸ™‚

Lisa xx
Maidenmummy
Member

Re: Does anyone has the same rare cancer as me?!

Oh Vicki, that is absolutely fantastic news! I am so pleased for you! What a relief! πŸ™‚

 

Sorry its taken me a while to reply after my surgery, I have been feeling pretty rough. All went well with the op. I had a bit of a melt down though, as i was really scared about going home with a drain in. Luckily all the hospital staff managed to calm me down, and I went home, which in the end was definitely the best decision. The first 2 to 3 days were very unpleasant, the pain was very bad, I had to have morphine a few times, but now 5 days post op I am feeling much better. The pain has settled down, and I had my drain removed yesterday, which i was so glad about, as I found it very awkward, and it made me squeamish, my Husband emptied it every day, as I couldnt even look at it. lol. Now thats gone I am sleeping much better, which is great! So now I hopefully go back on December 20th for the results, so everything is crossed that I receive good news this time!

 

Lisa. xx

VickiB7
Member

Re: Does anyone has the same rare cancer as me?!

I don't mind telling you I was really scared today. I didn't realise how scared I was about getting chemotherapy. As the other surgeon told me last time 'the lobular cancer is a little traveler'. I got it in my head that I would need chemo.

I got the strips holding my wounds together off today and Dr Roa (my surgeon) is very pleased. He said I am a good healer 😊. He is very pleased there isn't any swelling either.

I was told he removed 20 lymph nodes (usually it's 10 - 15). I couldn't believe what he told me next 'there is NO cancer in any of my lymph nodes'. He said out if 22 nodes the only cancer was from the hidden cancer that was found last time. He is amazed too.

No need for chemotherapy (I did get him to repeat it a few times) πŸ˜„

I have to start the Tamoxifen again today. I also have to get radiotherapy. I go to see about thatt next Thursday.

I also have my appointment to see Dr Roa again on Thursday 7th Dec 2017 πŸ˜„

Dr Roa says I have compression of my nerve - I have been sleeping in the same position. It will go away but might take about a month.

I hope all goes well with you tomorrow- thinking about you. Let me know how it goes.
Vicki x

Maidenmummy
Member

Re: Does anyone has the same rare cancer as me?!

I am in Grantham, Lincolnshire, but i am being treated at the Breast Institute at Nottingham City Hospital, which is roughly an hrs drive from my house. I've decided to speak to my BC Nurse tomorrow, to tell her my fears, i really am so worried about going home the same day 😞

That does sound strange about the feelings in your leg, but it probably will be to do with your body finding a new route. I will definitely be interested to hear what your consultant has to say about it!
VickiB7
Member

Re: Does anyone has the same rare cancer as me?!

I am shocked at the difference in care. I am in Edinburgh - where are you? I got out the same day for the sentinel node removal but was on morphine tablets for two days after full clearance I was told it would be three days but was kept in for 6. Can't believe they are sending you home the same day 😞

I have a strange thing I am going to ask about tomorrow when I see the consultant. From my hip to my knee (on the same side as the lymph node clearance) is very numb and tingly. It feels cold. I was told that your body is clever and will deal with the lack of lymph nodes by re-routing but find it amazing if it can do it to your leg. Might be some odd coincidence.

Thanks Ladybowler. I will let you both know how tomorrow goes πŸ™‚
Maidenmummy
Member

Re: Does anyone has the same rare cancer as me?!

Thank you so much Helena πŸ™‚ xx
Maidenmummy
Member

Re: Does anyone has the same rare cancer as me?!

Hi Vicki.

 

Thank you for your reply, and for the info. I do wonder why some hospitals keep ladies in after a full clearance, yet mine will be sending me home the same day! Its a bit of a worry for me tbh, as I live an hour away from the hospital i'm being treated at, and it wont be easy just to pop back if I get any problems. It seems like I will have to go back for the drain to be removed, yet i've read posts from other ladies on here that have had a district nurse come visit them to remove it, I think I will ask if thats a possibility for me. I really hope that none of my other nodes are affected, I will be very shocked if they are, as my tumour was so small, and slow growing. I will have to wait and see, one step at a time!

 

I have everything crossed for your results day, let me know how you get on, I will be thinking of you! xx

VickiB7
Member

Re: Does anyone has the same rare cancer as me?!

Hi Lisa, there is no doubt about it lymph node clearance is a bigger op. I was supposed to be in for 3 days but it turned into a 6 day stay as I was still producing fluid - each morning the doc said to me 'one more night'. I was glad I was able to stay in - I was offered to go home on the day before I got home but would have had to check the amount of fluid drained and phoned in. A bit of a hassle. I did tug the drain while in hospital and it did hurt but was glad I could get it checked right away.

Each day I feel better than the last but my arm is much stiffer than last time and my underarm is numb but tingly sore (if that makes sense). Strangely I don't have any pain in the lumpectomy area.

I find out what is in the lymph nodes on Monday (fingers crossed for no chemo).

Good luck for Tuesday and remember when you get your lymph nodes removed anything in there will be removed too so can't be a problem again. You will heal and get back full strength again. Sending love. Vicki x
Maidenmummy
Member

Re: Does anyone has the same rare cancer as me?!

Thank you so much πŸ™‚ xx
Maidenmummy
Member

Re: Does anyone has the same rare cancer as me?!

Thank you ladybowler, I appreciate your kind words, I will definitely let you know, gotta feeling i'm gonna need the support! xx

Maidenmummy
Member

Re: Does anyone has the same rare cancer as me?!

Hello VickiB7.

 

I was the same, I had no idea there were so many types, its mind boggling! If you dont mind me asking, how are you getting on after your full node clearance? I am really worried about having a drain, I will be sent home with it in, and i'm so scared about catching it, and having to empty it too 😞 Is the pain much worse than after your sentinal node removal? I found the pain managable most of the time, but i have been warned that the pain is likely to be worse after full clearance. I so didnt want more surgery, and the possibility of chemo too is making me feel quite depressed 😞 x

VickiB7
Member

Re: Does anyone has the same rare cancer as me?!

Hello Msidenmummy, before I was diagnosed with BC I thought there're was only one type. It has been a real eye opener to find out about all the different types. I admit I haven't heard of your cribriform cancer but hope whatever treatment is used gets rid of it for you. I am just out of hospital having had a full lymph node clearance and lumpectomy and go for my results on Monday to see if I need chemo. I already had a lumpectomy and sentinel nodes removed. All went well but they found cancer in one lymph nodes - not from the tumour they removed but from lobular (hidden - didn't show in mammograms or ultrasound). That's why needed other lumpectomy and lymph nodes cleared.

Best of luck for 6th Dec x
Maidenmummy
Member

Re: Does anyone has the same rare cancer as me?!

Thank you very much Jobey68 πŸ™‚

 

Trust me to have a rare cancer, I like to be special obviously! lol xx

Jobey68
Member

Re: Does anyone has the same rare cancer as me?!

Hi Lisa, I've found some info on line and posted a link that explains about  Cribriform BC, I'd not heard of it before , I had Tubular which is another rare one and when diagnosed last year I only found 1 lady here who had the same , a few more have come along since so you may come across someone with the same as you Xx 

Jobey68
Member

Re: Does anyone has the same rare cancer as me?!

Maidenmummy
Member

Re: Does anyone has the same rare cancer as me?!

Thank you for your reply ladybowler πŸ™‚

 

I'm glad to hear that so far all your treatment is progressing as planned πŸ™‚ I should have said that my cancer is also hormone receptor positive. I should have been starting radiotherapy after my lumpectomy, but now that we know my nodes are affected that has obviously been delayed now, which is annoying but never mind. I'm just glad that I dont have to wait long for my 2nd surgery, I just want to get on with it! lol

 

I will have another search on the forum, thank for the advice πŸ™‚

Maidenmummy
Member

Does anyone has the same rare cancer as me?!

Hello everyone. Well today I went back for my results. Thankfully they got clear margins of 7mm, after my lumpectomy, but unfortunatly the one lymph node they removed came back positive 😞 I am quite shocked by this, as my lump was small, only 12mm upon removal. Anyway, I will now need full node clearance, which i'm having next Tuesday (6th Dec). In the meantime they are doing an Oncotype test, to see if chemo is recommended, or not. I was also told that my cancer is a rare one, apparently only 4% of BC's are this, its called a Cribriform, which is an invasive type, but mine is grade 1, where previously they thought it was grade 2. Apparently the good news is the outcome for my type of cancer is generally better than many other types of invasive BC. I was wondering if anyone on here also has Cribriform cancer? I have searched the word on the forum, and nothing comes up! 

 

Many thanks, Lisa πŸ™‚