Tuesday the 10th December - Treatment Plan!!!!!!

Hi JoBab welcome to the forum and so very sorry that you have not had a  response before now.

I assume from the date of your post that you will now have seen the surgeon and got some idea of the next steps? How did it go? Are you ok? Anything that you still want to ask?

Sending some hugs your way meantime.

xxxx

Hi granny59, thank you for taking the time to reply.

Yes, I have had the meeting with my Surgeon and surgery has been listed for the 16th of January when he will take the lymph nodes from under my arm out as well.

I have been taking Letrozole which he tells me has shrunk "Larry the Lump".

There has been some concern with the anaesthetic because of other health issues and a suggestion was made for me to continue with the drug and avoid surgery, however the Anaesthetist has given the  go ahead and my Surgeon now seems happy to do it so thats great with me because I just want to get rid of it.

Pre op is on the 6th of January and I have so many questions I want to ask about the drain, what sort of clothes is going to be easier to wear whilst the drain is still in, how long after surgery will Chemo commence, pain relief etc, etc, etc

I am so grateful for your hugs and I know I will get through this because you ladies are an inspiration.

xxx

Hi

My story on profile if you want to read .

We're all different but I found the op straight forward just wanted rid of cancer . Plus bonus of not much time for brain to make up horror stories.

 I didn't gave ancillery node clearance only sentinel so 3/4 nodes .

Before I went in I moved all button thru tops to one side of wardrobe and bought a couple of new ones also button thru nightshirt . Mainly because of ease of access to wound also not easy to lift arm above head .

Dont worry about war and peace questions write them down cross off as they answer them then ask what's left better still get whoever goes with you to be secretary while you listen  

In our hospital you get goody bag from macmillan with softie false boob I called mine Freda lol heart cushion for under arm support and shoulder bag to hold / hide drain . Tubing long enough to reach floor when in bed . Fluid is measured each day and after about 4/5 days if drained at correct level drain removed . 

After op I had more discomfort than pain because nerve block was given along with anaesthetic prior to op. Also took all painkiller meds offered lol . You possibly will get more pain in armpit because of clearance if you need pain relief ask .

Best advice I had was to look at wound asap so it doesn't become big thing in head .

My chemo started about 6 weeks later I also advanced to Clarissa my Silicone prosthetic.

Remember we're all different so all of the above could change but one thing I can almost be certain of is it won't be as bad as your imagination might tell you . The worst part is waiting for things to happen .

youre in the right place for support and answers 

Margaret x

Hi

I’m glad that you have had the meeting with your surgeon, and that you are now booked in for surgery.  I will have a similar operation to you (mastectomy plus axillary node clearance) on 2 January, although I have already completed my chemo treatment, having had my final session just over three weeks ago.  As my lump was HER2+, I had neo-adjuvant chemo of two cycles of EC, followed by four cycles of docetaxel/herceptin/perjeta.  The 18 weeks of chemo were quite tough, but perfectly manageable and the drugs have done a good job, as my latest breast MRI showed that the lump has totally disappeared and the one lymph node which was affected is now clear.  I will have a follow-up treatment of fourteen more cycles of the targeted therapies (herceptin/perjeta) after surgery, and this will start on 27 January, so 3-4 weeks after the operation.  

I had my pre-op with the surgeon and BCN last week, and like you I had lots of questions.  I am also a bit concerned about the drain, particularly as the BCN showed me one and the bottle is huge (like a milk bottle).  The BCN gave me a bag which goes over the shoulder to put it in, which should be helpful when moving around, and showed me how to mark on the bottle how much fluid has drained each day.  She told me that if you are having your lymph nodes removed, there will be more fluid and the drain may have to be in for longer, but that the drain is a necessary evil as otherwise the fluid would build up in the wound itself.  She said it was best to wear a front-buttoning loose top in the days after surgery and when the drain is in.  She also gave me a heart-shaped cushion which is to support the bad arm when sitting/sleeping, and I think this will be very useful.  I was also given two “softie” prostheses of different sizes to wear after surgery (I have chosen not have a reconstruction), plus lots of information/brochures about post-surgery bras, which I have to bring with me to the hospital.    She said that the Asda post-surgery bras are very comfortable and good value, so I have ordered some of those.  I was also given the booklet of arm exercises to do after surgery, which are apparently particularly important if you are having all your lymph nodes removed due to the risk of lymphedema. 

I am nervous about the operation, as I have never had surgery before, but it has to be done (just like the chemo) and so I am trying to prepare for it in the most positive way I can.  The advice and support from ladies on this forum who have been through surgery is wonderful, and I have learnt lots of tips already from them.  I am sure that we will both get through this next stage of our treatment OK, even if there are a few challenges along the way (for me, I think that dealing with the dreaded drain bottle will be one!)  Like you, I will be glad to get rid of the breast which I feel is diseased tissue even if the lump is no longer there, and so the surgery will be an important step towards recovery.

I hope that your pre-op meeting will go well, and that in the meantime you will have a good Christmas.

Blackcat xx

Hi Blackcat

Thank you for your reply.

I will be thinking of you on the 2nd of January and fingers crossed that the dreaded drain wont be as bad as we're both thinking.

I will take a look at the Asda post-surgery bra's, thank you for the tip.

I am also nervous about the operation, well to be honest frightened more of the anaesthetic with having had a CVA (stroke) and heart problems, but they must think I am fit enough so that's good enough for me.

Have a wonderful Christmas and New Year, (easy to say), and please keep in touch and let me know how you get on.

xxx

Hi Margaret

Thank you for all of the tips, I had already thought about the button through nightware but will now go on the hunt for button through tops.

Hopefully I will too get a "goody bag" because I have already been looking for a bag to carry the drain around in, (a tip from someone on here).

I will ask about a nerve block at the pre op meeting because that sounds like a great thing to have!

Not sure when Chemo will start afterwards but at least things are on the move now.

I've just bought a "V" pillow as one of the girls on here said that she found that was helpful.

Anyway, onwards and upwards, it will be such a relief to get this over!

Again, many thanks for your help.

xxx

I'm following any tips for surgery now with interest as it gets nearer for me. Sounds like there is a lot to think about with drain bottles and what to wear immediately after the op and then changes as swelling improves and wound heals.

My appointments have started to come through for January but won't be as quick as I might have liked as they can't fit me in for an MRI until Mon13 Jan, then they have to discuss the results at the Friday meeting so I will get to see the surgeon w/c 20 Jan. Not sure how quickly I will then be on his list but hope it won't be too long, I just want it to be done and not to have ages to think about it.

I don't think there is necessarily any risk with the delay, I'm sure they wouldn't leave me if there was. I have already had my chemo treatment, which will end on 27 December, and a good response, with continuing Herceptin/perjeta x 14 more sessions. Hopefully, I should be in for early Feb, which to be fair, was I think the estimated date for surgery mentioned at the start. I guess I'm just being impatient with the end of chemo approaching, and wanting to get the next part of the journey done.

Good luck and Blackcat20 for your ops.

Hi all

Before going out and spending a lot of money on underwear etc you need to check what your surgeon does - when I had mastectomy with implant I was fitted with a bra after the operation and ended up wearing this and a combination of vest tops with the bra bit in, last week I had the implant replaced  with a DIEP flap and have not had to buy anything else. I terms of bags to carry drains around it , I’ve always used a simple canvas shopping bag , had two drains removed today and am so relieved , they are a pain, particularly when you forget about them. I also had a coat hanger in the shower to drape the bag on , and chairs dotted  around the house to sit on - like drying my hair I normally stand up. 

The mastectomy surgery is very routine , usually go in that morning and out the following day , although the DIEP reconstruction was a six day stay, but with all surgeries you need to make sure you are as fit and well before the surgery to aid your recovery , and do all the exercises you are given

Best wishes to you all

Jo x

Thank you Jo.

I am going to speak to my Breast Nurse this afternoon to see what she says.

I have a pre op appointment on the 6th of January but that doesnt give me much time if I do have to run around looking for underwear etc.

I suppose all hospitals are different so maybe best check to see what mine says.

I love your idea of a coat hanger in the shower and will definitely be using that tip.

Have a good day.

Jo

x

Hi all,

Just an update on the Asda mastectomy bras, in case anyone is interested.  They arrived yesterday, and the immediate post-surgery ones look very comfortable, with an adjustable (with hooks) front opening and no seams.  They are not exactly pretty as they look a bit like an old-fashioned corset, but comfort is more important immediately after surgery.  The ones for later after surgery are attractive and don’t look any different to a normal bra - they have an adjustable back fastening and are made of soft cotton, but have a lacy front.  All of them have pockets for a prosthesis. The cost was £15-16 for each pack of two bras (black/white or black/nude), so was very reasonable. 

Obviously I still have to see what they are actually like after the operation, but so far, so good.  I will report back in due course!  I got my admissions letter from the hospital this morning for the op on 2 Jan, so it is all becoming very real now. I have felt quite nervous since my pre-op assessment last week, but now I have the letter and know the practical details of when I need to be there/which ward etc, I feel better and just want to get this next stage of the treatment done.  In the meantime, I am trying to get back into eating regularly and healthily before the op.  It is four weeks today since my final chemo (docetaxel/herceptin/perjeta), and only now are my warped tastebuds and appetite beginning to recover.  

I hope that everyone is doing OK and is having a good day.

Blackcat xx