Hi there

I’m going tomorrow for a mastectomy as a result of DCIS. My surgeon suggested this as it’s quite a large area and I have quite a small chest. I am not having reconstruction and hopefully will not need further treatment. They will check 1 - 4 lymph nodes too. I’m 52 and this was picked up at my first mammogram in October. I’m a primary music teacher and had 10 nativities to play for before Christmas hence the delay.

S

Good luck tomorrow! Will be thinking of you xxx

Hi Radley,

Don't delay. Contact your breast care nurse as soon as you can and get this sorted out.

My consultant's secretary phoned home yesterday when I was at work. She told my husband that there are no appointments before 2nd July. She also said that they do not give results out over the phone. The only advice that she could offer was for me to keep phoning regularly to see if any cancellations come up. I will certainly not be leaving this here. I would have expected to have any surgery I may need over and done with by then!

Kind regards,

Jolamine xx

Hi Harvell,

I ended up with 2 excisional biopsies, one on my face and one on my leg, but no surgery. This has been delayed until I get my biopsy results back.

My consultant's secretary phoned home yesterday when I was at work. She told my husband that there are no appointments before 2nd July. She also said that they do not give results out over the phone. The only advice that she could offer was for me to keep phoning regularly to see if any cancellations come up. I will certainly not be leaving this here. I would have expected to have any surgery I may need over and done with by then!

Kind regards,

Jolamine xx

Here's hoping you get a cancellation very soon Jolamine. I am shocked at the 4 month wait. I feel for you, as strong as you are this will certainly try your resilience!

Best wishes and keep up the phone calls xx

Hi Harvell,

Thanks for your concern. I am like a dog with a bone. I won't let this lie until I get this appointment brought forward.

Kind regards,

Jolamine xx

Hi Jolamine

Saw the BCN today. She examined me and said that there is no fluid- so not a seroma but unfortunately I have developed dogs ears- swelling is a mixture of skin and fatty tissue and feels a bit firm and not cystic.She said there is nothing we can do to help it go away.But if it gets bigger and painful/ uncomfortable then Imight have to see the Surgeon who will recommend a revision surgery.

Have you had any of this problem- do you know of anything to help get rid of it-any creams or massage etc. 

I cant stand the idea of another surgery!

Hope you had been successful in getting a sooner date! Are you keeping well?

Regards

Radley

Hi Radley,

I'm glad that you saw the nurse today and that you at least know what your problem is now. Have you got any further appointments, or is it a case of wait and see?

My right breast is still a bit of a mess as I had a lumpectomy and a mastectomy on this. My left look so much better, as I only had a mastectomy on that. There was quite a bit of scarring on the left, despite using Bio-Oil as if it was going out of fashion.

I eventually found a nurse specialist who specialised in myofascial release. This is really a way of working the tissues to release some of the tighter and uneven bits of the scarring. She also used this on my tummy, where I had keloid scarring following a full open Cholecystectomy to remove my gall bladder.

That scarring was nearly 20 years old, but she made a great difference to both areas of scarring. Unfortunately, I still have a ridge right down the middle of my breast area, which only another surgery will rid me of. Like you, I don't want any more surgery and, have learnt to accept my body as it is now.

I was back at hospital today to get my stitches out and mentioned my 4 month return date instead of 4 weeks. My consultant had rushed the biopsies through and although they looked suspect on the surface, the pathology results are good. They still lhave to discuss them at their MDT meeting as this is an unusual presentation. There's no need for a return visit and I was discharged - what a reief!

Kind regards,
Jolamine xx

Hi Jolamine

I am so sooo very happy for you.

What a great relief it would have been for you to know about the results which have come out so quickly.

This is one less of a worry for you after the pulavo of the delayed appointment-it’s nice to know you won’t need that appointment after all.

As you have said I will have to learn to live with the scarring and accept it.

What in fact did the Nurse practitioner did for you?

What is this myofascial release-is it some form of massage?My nurse suggested that I do a light massage of the area which may or may not help.

Best wishes and Regards

Radley

Hi Radley,

You want to make your tissue look as good as you can before you can accept it. I found the myofascial release made a huge difference to how I felt about myself. My breast area will never look pretty on that side, but it is infinitely better than it used to be. I even did it myself after I had my knees replaced and, much to my surprise it worked.

Instead of looking all puckered and scarred, the scar is now part of my remaining breast tissue. You will find out a little more about it here:- www.naturaltherapypages.co.uk/.../Myofascial_Release_Therapy

This was done for me free of charge at the Haven, a local centre for people with cancer and musculo-sclerosis. You need to leave it for a few months after surgery before you start this treatment, as you want to let the skin heal first.

Yes, it was fantastic to get good news on Monday. I've been walking about on Cloud Nine all day today.

Kind regards,

Jolamine xx

Hi Jolamine

Thanks for sending me the link for Myofascial Release. I had a look through but couldn’t find any in or close to my area.

I will leave it for a few months to see how I get on-anyways will have to see the nurse for the silicon fitting in a months time-perhaps I can mention it to her then and get some advice.

You deserve to be on cloud nine after the fantastic news. Enjoy it!

Regards

Radley

Hi Radley,

If you ask around, I'm sure that you'll find somewhere nearby that does myofascial release.

This was just one website, but there are several others that might have someone closer to you. Do you have a Maggies Centre or a Haven anywhere close to you? They should also be able to point you in the right direction.

Your nurse might well be aware of someone. I hope that you manage to find a practitioner who can help you.

Kind regards,

Jolamine xx

Hi Radley,

If you ask around, I'm sure that you'll find somewhere nearby that does myofascial release.

This was just one website, but there are several others that might have someone closer to you. Do you have a Maggies Centre or a Haven anywhere close to you? They should also be able to point you in the right direction.

Your nurse might well be aware of someone. I hope that you manage to find a practitioner who can help you.

Kind regards,

Jolamine xx

Hi Jolamine,

How are you these days?Hope all is well with you and you are still continuing to be the good samaritan by helping people.

I disappeared from the chat since a year  for personal family reasons and am back now.

As you would remember in our previous chats I had been on Leterozole since February 2019.

I just need your opinion regarding this.For the last six months I have developed Dequervains in my left hand and rt thumb pain as well. I thought it was due to the tablets hence I stopped for a couple of weeks-now it is much better.I saw the surgeon to discuss this and he has suggested to change to Tamoxifen or stop for another 2 weeks and then restart  leterozole and if s/e come back then to change to Tamoxifen.I opted for the latter.

I was also having bad bouts of coughing which has completely disappeared on stopping the leterozole.I am worried if it will come back if i go back on it.

What shall I do-I know tamoxifen can be carcinogenic(uterus) so I am scared.

Your opinion will be appreciated and will put my mind to rest.

Thanks and Kind regards 

Radley

Hi Radley.

Welcome back. I am sorry to hear about your family problems, but hope that they have resolved now. I did things the opposite way to you. I started on Tamoxifen for the first year after my lumpectomy. I found that this affected my emotions, but wasn't too bad with joint pain. When I had a double mastectomy a year later, I took Letrozole for 6 years. This played havoc with the joinst in my arms, legs and back. I think that most hormone therapies have some side-effect or another.

Many people seem to cope better with Tamoxifen than Letrozole, so it is certainly worth your time to try it.  With regards to being carcinogenic, it's just a matter of regular check-ups to ensure that there is nothing untoward in the uterus.

Please let us know how you get on.

Kind regards,

Jolamine xx

Hi Jolamine

Thanks for your prompt reply.

Yes i had a lot of problems with my family living abroad-so i had to go there to sort things as i am the eldest. Thank God all well now.

I have read in some forums that a different brand of Leterozole can help.

I spoke to the BCN-she did agree-but said they are so expensive that is why the pharmacists give out the generic ones.

She suggested i speak to my GP which I did (was able to get a Tel Consultation straight away) but she adviced me to check with the Pharmacy and find out what brands they have and if the coatings are different to what I am taking she would request that for me.

So waiting to hear from Pharmacy to You who deliver my prescriptions. 

Anyways how have you been-have you been given the all clear now?

Will keep in touch.

Regards

Parveen

Hi Parveen,

I am so sorry to hear about your family problems, but am glad to hear that you have managed to resolve them.

Yes there is a difference between the different brands of Letrozole. Most pharmacists provide generic replacements, because they are so much cheaper. In most cases, the original drugs cause less adverse reaction. I may be wrong, but I was given Femara and found this better than some of the other brands.

I hope that between the two of them, your GP and pharmacist can help you out.

I'm happy to say that I stopped taking Letrozole in July 2017, after taking it for 6 years.I was given the all clear and, I have been doing well since then until this year, when I have had 3 suspected melanoma - one just under my eye, one on my back and, one just above my ankle. They have all been removed now and, fortunately, they were all benign.

Hi Jolamine,

Nice to know you have had the all clear since 2017 which i guessed somehow.

It is a big relief isnt it not to be on medication.

Thank God all the skin lesions were benign.

As for me I will await the Pharmacist's reply and decide.

Will keep you updated.

All the best and Regards

Radley

Hi Parveen,

I hope that the pharmacist gets back to you soon with a suitable solution.

Kind regards,

Jolamine xx