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Holding on tight!

10 Oct 2018 14:28

so the last few weeks have been a rollercoaster of emotions to say the least. We stumble along to one clinic then the next and so it goes. Last week I have sentinel node biopsy- yesterday I saw my consultant for results- my bc has spread to 3 of the 4 nodes they removed! Didn’t see that one coming - yesterday was a haze and today’s not much better. My whole treatment plan has now been changed- I will have a mastectomy- no implant - further nodes will be removed from my armpit and then chemo and radiotherapy. Oh and a scan on Friday to check rest of me - mind blowing - all we can do is put our trust in the amazing NHS and pray they can get rid of it - thanks for listening - still no tears!! I’d like to get off this train and keep on running but I guess that’s not a good idea! Holding on !

Re: Holding on tight!

11 Oct 2018 00:29 in response to sunandsea

 

Hi Sunandsea,

I am sorry to hear the results of your sentinel node biopsy. I have had 2 bouts of breast cancer in the past 8 years. I had a lumpectomy followed by Tamoxifen first time around and a double mastectomy followed by 6 years of Letrozole the second time. I stopped taking Letrozole in July 2017.

Many people panic when they hear that they need a mastectomy, but, from the benefit of my experience, I felt much happier once I had my mastectomies. I was not as sore post-surgery after my masectomies as I was with my lumpectomy. I also felt a relief that I had removed as much as I possibly could. I couldn't have reconstruction, due to previous surgeries, but I have managed fairly well with an assortment of prostheses. I still swim regularly, go to the gym, etc - the only time that I find it a bit awkward can be in low cut or evening dresses, but I tend to use a lace modesty panel in such instances.

All of my nodes were clear both times and I have grade 1 cancer, so I was fortunate not to need chemo.

We would all love to be able to get off this train, but I fear that we are all stuck on it.

I hope that your scan is clear on Friday. Please stay in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Re: Holding on tight!

29 Oct 2018 16:59 in response to Jolamine

Hi all

so much has happened since my last post - first I had a ct scan following results of sentinel node biopsy/ the results of the scan showed ‘something ‘ on my lung and top of my spine but doctors say they’ll scan me again after chemo to see if it’s still there - last Tuesday I had a mastectomy and auxiliary node clearance   And although I’m pretty sore and my left arm is a bit stiff I’m very pleased to say I’m feeling ok! It’s amazing now they’ve taken my left breast away and hopefully all the tumour- I still feel slightly like it happened to someone else and not me’ I  very lucky to have so many kind and thoughtful friends and the most amazing family to help me through this x I count my blessings everyday x on Thursday I’ll get the results of operation- so it’ll be good news x thank you for sharing - keep strong and positive- it’s all we can do x

Re: Holding on tight!

29 Oct 2018 19:46 in response to sunandsea

 

H Sunandsea,

My, you've had a busy time. I'm glad to hear that your surgery is behind you now. I am also delighted to hear that you have such good support from your friends and family. It makes all the difference in helping you to cope with this.

I am sure that you are still really worried about the results from pathology. I shall be thinking of you on Thursday and hope that it will be good news.

Please keep in touch and let us know how your results go.

Kind regards,

Jolamine xx.

Re: Holding on tight!

30 Oct 2018 12:59 in response to Jolamine

Hi jolamine

thank you for your kind words - yes it’s been a roller coaster and yes I’m anxious about Thursday - I’ll keep you up to date

kind regards x

Re: Holding on tight!

5 Nov 2018 18:18 in response to sunandsea

So last Thursday I saw my consultant got results from mastectomy and node clearance- he said they were happy they’d got all of tumour but it had shown up in another 5 lymph nodes totally 8 altogether- he said a lot but st the same time he didn’t give cancer a stage - is this normal do you think? He said I will have chemo and radiotherapy and I should not expect to return to work this academic year ! Crumbs I was hoping to be back before then - shows how niave I am about this cancer thing ! Anyways I’m doing well after op and just waiting to see oncologist on Thursday- fingers crossed x

Re: Holding on tight!

6 Nov 2018 00:51 in response to sunandsea

 

HI Sunandsea,

I'm glad to hear that your surgeon says that he has got all of the tumour, although the news about your lymph nodes wasn't so good. Was there any discussion about removing further lymph nodes, or is he hoping that radiotherapy and chemo will zap them?

Sometimes you have to wait a little longer for your staging. Ask your oncologist about it on Thursday. I am glad to hear that you are recovering well after your op, but would agree with your surgeon that you were being over optimistic in expecting to be back to work before the end of this academic year.

You are likely to feel very tired after your chemo and I'm sure that you would find it almost impossible to work then. Still, just make the most of the extra time off and rest your body sufficiently to fight this properly.

I hope that all goes well when you see the oncologist on Thursday and certainly have fingers and toes crossed for you.

Kind regards,

Jolamine xx

Re: Holding on tight!

6 Nov 2018 14:00 in response to Jolamine

Thank you Jolamine - yes I will ask oncologist about stage of cancer- they took 4 nodes in sentinel biopsy a few weeks before my op and then another 21 whilst doing mastectomy- I didn’t think the numbers were so bad ie 8 with signs of cancer but surgeon was not so happy ! You’re right - I must rest and get myself completely well before returning to work it’s just that I miss my friends and the children- teaching is so full on it takes over everything but I enjoy it - letting go is proving a bit tricky ! I think I’ve said before- I still feel like I’m in a bubble and it’s all going on around me - weird! Xx take care all x

Re: Holding on tight!

7 Nov 2018 02:38 in response to sunandsea

 

Hi Sunandsea,

I didn't realize that you had 21 nodes removed when you had your mastectomy. You should have most of them out in that case. It might be worth asking if there are any left.

I can understand how you must be missing your work, but you will get used to being off in time. It is great to have a job which you really enjoy and miss so much ehen you cannot continue with it.

I was like you after I was first diagnosed. I walked around in a stupor for weeks. Everything felt so surreal.

It's a good idea to bring someone with you to your appointments if you can. It is also helpful to draw up a list of questions for your consultant before each consultation.

Thinking of you on Thursday and Friday and fingers crossedKind.

regards,

Jolamine xx

 

Re: Holding on tight!

7 Nov 2018 15:16 in response to Jolamine

Yes that’s a good idea - I will ask about nodes- thanks. Yes it’s tricky isn’t it ... when this cancer thing kicks in everything gets turned on it’s head and for me as I’m sure with all of us , there was no time to think about not going back to work - I think I had about 4 days and that was it - no more work for who knows how long ?!? But I do think I’m v lucky because I know I’ll go back at some point and all of this will be behind me - I hope xx thank you for listening take care x

Re: Holding on tight!

8 Nov 2018 13:53 in response to sunandsea

 

Hi sunandsea,

Yes, everything happens so quickly from the minute you first attend the breast clinic.Where has all this left you with reconstruction? Will you still be able to have it done after treatment? I was unable to have it due to previous operations, disconnected with cancer, but I manage ok with an assortment of prostheses.

I can still go swimming and to the gym. The only thing I find difficult is evening dress. I sometimes have to wear a modesty panel if clothing is too low cut. Having to wear a compression bra and sleeves for lymphoedema can be a bit of a bind.

Has there been any mention of when you will start treatment yet?

Think of this time as Christmas shopping leave, as you may not feel like doing any of this once your treatment starts.

Kind regards,

Jolamine xx

Re: Holding on tight!

8 Nov 2018 17:07 in response to Jolamine

Hi Jolamine - meet with oncologist today! I will start my treatment in about 2 weeks time - x 6 cycles at 3 week intervals and then radiotherapy   X 4 weeks everyday! I’m have a port put in my chest as they always find it tricky getting canulas in me! That’s being done next Wednesday so full steam ahead . I’m hoping to have reconstruction using tissues from my tummy eventually but at the moment we have to get this knocked on the head today- I think I said before I have the brca1 mutation so I’m also going to have tubes and ovaries removed at some point !!! Good idea about Christmas/ I love Christmas but I think you’re right -  this year it might be a little quieter than normal xx

Re: Holding on tight!

9 Nov 2018 01:15 in response to sunandsea

 

HI Sunandsea,

It sounds as if you are getting well prepared for chemo and radiotherapy. Given the BRCA  mutation, you are probably doing the best thing by removing your tubes and ovaries. Is your surgeon in favour of this?

I'm glad to hear that reconstruction is still an option after chemo and radiotherapy are finished.

I love Christmas too, but have had to cut back on my previous activities at this time of year - still we always manage to enjoy this time of year. It's hard to believe that it is only 7 weeks away.

Hope that you have no problems getting your canula in on Wednesday.

Kind regards,

Jolamine xx

 

 

Re: Holding on tight!

9 Nov 2018 16:43 in response to Jolamine

Thank you x yes surgeons are keen to get bits removed but they stress there’s no urgency - I’m in that frame of mind where I just want everything gone so I can hopefully minimise chances of cancer coming back or going elsewhere- even though I realise it’s not always that simple !!! Thank you for you kindness and time x

Re: Holding on tight!

9 Nov 2018 18:17 in response to sunandsea

 

Hi Sunandsea,


I must confess that I felt the same when I had the double mstectomy. I had a lumpectomy first time around and was told that it was not an aggressive form of cancer, yet within a year, it was back again in the same breast. I also had a lump in my other breast half way through the year, which fortunately turned out be benign, but it was about twice the size of the malignant one.

When I asked my surgeon if it would be worth doing a prophylactic one he agreed. I'm glad that I did, because I feel that I have removed as much as I could at the time. This also did away with the need for chemo.

Kind regards,

Jolamine xx