Hi Loola,

Welcome to our forum. I am so sorry to hear that you have had a return of your caner and that you are still having trouble with your breasts after all this time. Have you phoned your breast care nurse to discuss this? I am not a doctor, but would have expected that everything would be healed by now. I sincerely hope that she can help you. The redness in the scar can take up to a year to settle down, but it will eventually.

Try not to worry about how your breast looks just now. I’m sure that your hubby will be so relieved that you have had your second surgery and, are on the road to recovery, that he won’t mind in the slightest how you look. You are still the same person that he fell in love with, and, a small scar is not going to change you. I am lucky in that my change of appearance has never impinged upon our relationship.

Many people don’t want to look at their scar tissue. I’ve got so many scars all over my body, that I’d make a great candidate for ‘Embarrassing Bodies’. I was worried about my appearance at first, but now I’m proud of my battle scars. They signify the fact that I am still alive and kicking and, after all Ive been through, I’m proud of that.
I have had 2 bouts of breast cancer in the past 11 years. First time around I had a lumpectomy. Second time, which was the following year, I had a bilateral mastectomy. I did have bother with an infection in one of my breasts, but antibiotics soon got rid of that. I was fortunate that I discovered a specialist nurse in the Haven. She specialized in myofascial release and, what a difference that has made. While she was doing this, she also worked on a scar I had from previous non-cancer related surgery. This scar was 10 years old when she worked on it and, again it made a huge difference.

I hope that your breast settles down soon, but please don’t be embarrassed about it. Do please keep in touch and let me know how you get on. We are always here for you.
Kind regards,

Jolamine xx

Thank you for your response Jolamine 

yes I know hubby not bothered by it. My kids aren't either. I think it's more the pain as I have lymphodema and it's under the scar so unable to sleep on that side as too painful. Just painful all the time. Hopefully the pain team can come up with a solution 

take care and stay safe

Hi Loola,

I'm glad to hear that your hubby and kids are not bothered by your scarring, but you have also got to feel good about it too.. It is still early days for you post-surgery. It takes time for things to settle down.

I have bilateral Lymphoedema in my arms and hands. I attended pain management classes, which were helpful. I also attend the Lymphoedema clinic. This is run by nurse specialists. I attend evey 12 weeks for 2 weeks. I get manual lymphatic drainage. Then my hands and arms are bandaged in compression bandage. I look like the Michelin Man when I'm wearing these and, get some very strange looks and questions. In between these appointments I wear compression sleeves from my shoulder to my finger tips. However, the trick is to feel confident in yourself and, you'll feel so much better.

Kind regards,

Jolamine xx

Lymphodema is hard. I'm going to try reflexology for it privately next week as that's supposed to be good. I just feel like a totally different person. I used to be blonde have g cup size boobs then dropped to a b cup then went bald and now have curly brown hair with a fat arm and one breast!

plus I have ms and the treatment has left me quite disabled now so am a very different person to the one hubby married but I'm so lucky with him because he supports me in everything and helps every way he can. 
I couldn't imagine having lymphodema in both arms. That must be such a struggle. Do you get much pain from it? X

Hi Loola,

The Haven is a registered charity providing support to people affected by a range of life limiting illnesses and to their family members and carers.The Haven do a number of complementary therapies and, all of them are free of charge. They offer reflexology, Indian head massage,  Aromatherapy, Reiki and Lymphoedema Self Management Service. They also offer a seated yoga class, counselling and a number of other services. Maggie's centres offer something similar.

If you haven't got either of these near you, have a chat with your GP, as there is likely to be something similar in your area. I am so sorry to hear about your MS. Life has definitely thrown you some googlies hasn't it? I hope that your reflexology helps you next week.

A Cancer diagnosis changes us all, as I'm sure does one of MS. The difficulty is in coming to terms with both and accepting 'the new normal'. I am so glad to hear that you get good support and help from your hubby. It makes all the difference in the world to have this. I am very fortunate with my hubby too. Unfortunately, he struggles with heart failure, but he fully supports me every step along the way, as do my 2 grown up children. What ages are your family?

Lymphoedema in both arms is no fun. I do get a lot of pain in both arms and, I am limited in what I can do when I am wearing my compression bandages, as they get filthy looking so quickly, but I get by. Do you get a lot of pain in your arm?

Kind regards,

Jolamine xx

Yes I do which my lymphodema nurse seemed surprised by made me feel very unusual/difficult patient. Wow how do you cope with lockdown as I'm sure your husband is shielding. Bandages must be no fun with all this hand washing!!

My children are 7&11. The older understands the cancer is likely to return but my youngest is too little to understand. Very much feels like living on borrowed time. My tumour was over 15cm and there's a more than 50% chance it will come back. Sometimes hard not to know what is ms/cancer related. 
I shall look into local services as you suggested. Would be a great idea. I know there's a Maggie centre in London I could access. 
how old are your children? It so helps to have an understanding/supportive hubby xx

i meant to ask did you ever get an itchy rash above your scar?

Hi Loola,

Does your lymphoedema nurse use a machine to do manual lymphatic drainage with you, or does she do the drainage herself? I tried using the machine, but it didn't reduce the swelling nearly as much as when she did this herself. Hubby and I are both shielding at the moment and, shall be very glad when we can get out and about again. My bandages are white, so you can imagine how filthy they get, no matter how careful I am. They also hinder finer movements. Something as simple as picking up, or threading a needle can be a nightmare. I have even tried wearing surgical gloves to protect the bandages, but this doesn't help much.

Your children are still quite young. How is your eldest dealing with your diagnosis? Have you told his/her teachers what you are going through? It is usually a good idea to keep them informed, as they can often pick up on certain vibes before you do. I can understand that your youngest is too little to understand yet. My children are 43 and 41 and both are very supportive, even though my son lives at the opposite end of the country to us. I certainly couldn't have got through all of this without their support, as well as that of my hubby.

I understand why you feel like you do. To be told that you have triple negative breast cancer is something which nobody wants to hear. I can also understand just how difficult it is to identify, whether your symptoms are cancer or MS related. There is a high chance that it will recur, but it will still be treatable. There are a number of ladies on this site with triple negative, stage 3. Have you followed any of their posts? If you go to the blue banner at the top of this page and click on the search facility, then insert 'triple negative' and click, you will find previous posts on the subject. You may find it helpful to speak to others who have this too.

I got an itch, but no rash in the early days after surgery, but that has died down since - I put it down to my scar tissue healing.

Please do look into local services and see what there is local to you. If you are close to London, I expect that there are quite a few. Ask your GP, Consultant or breast care nurse, who should all be able to point you in the right direction. I know that I was quite surprised by how many different services there are locally.

Have you been prescribed any medication for your pain?  I took Lyrica for a few years, but had to give it up eventually, as it was causing a number of side-effects.

Kind regards,

Jolamine xx

Hi I'm interested my hair fell out after chemo and it's now growing back grey I'm 49, anyone else experience any changes. I'm due have a mastectomy in a few weeks any tips re avoiding lypmhodema, what to wear do I need open fronted bras, will I be in a lot of pain?

Hi Lupita 

my hair has grown back brown and curly! Thankfully no grey hair but I'm sure they'll come. I used to have blonde hair so having to get used to that. 
Your risk of lymphodema depends on how many lymph nodes you've had removed. All of mine were removed. I had a very bad bash to my arm causing bruising and then the lymphodema started following this. Good luck with your mastectomy. It is a true rollercoaster of a journey but you will get out the other side a stronger person!!

i found a front opening bra was helpful following surgery but just whatever is comfortable for you. Good luck xx

Hi thanks I don't mind the grey hair, I'm not sure how many lymph nodes they will be removing i think it depends on how many have the cancer cells? I have my pre op Monday so will ask then, dies the physio and exercises help? Yes I have purchased front opening bras and pjs in preparation, can I ask how long you were in hospital for after your surgery I heard you can be discharged on the same day?