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

Relieved

Had my follow up appointment after Mastectomy today.

Good news no need for chemo or radio therapy but for prevention of recurrence I will have to take letrozole for 5 yrs and annual mammograms.

Has anyone been on letrozole and had bad side effects?Can you share your experiences with this medication?

Hope I won’t have any serious side effects with it .

Thanks and Regards

Radley

Hi Radley,

I am so glad to hear that all went well yesterday. Like you, I didn't have radio or chemotherapy after my double mastectomy. After my lumpectomy,I was put on Tamoxifen, but when I found the second lump in the same breast a year later, I stopped taking this and moved on to Letrozole for 6 years. I understand that some doctors like you to stay on it for up to 10 years now, instead of 5.

Have you read the information leaflet that comes with your Letrozole? This outlines most of the side-effects with it. If you want to find out more about these, why not use the search engine on the blue banner at the top of this page. If you insert Letrozole or some associated words in the search box, then click, this will bring you to previous discussions on it, which you may find helpful.

It is sometimes a bad idea to dwell too much on side-effects, as you will know soon enough if you do develop them. Reading about them all can convince you that you have them, even though you may not.

That having been said, I sincerely hope that you won't be plagued by any side-effects.

Kind regards,

Jolamine xx

Thanks Jolamine

I did read the leaflet which gives a very long list

 of side effects.But you are right  reading too much about it doesn’t make it easier and you start imagining things.

A week on Letrozole so far so good apart from feeling a bit tired let me see how I get on with it .

I seem to have seromas on either side of the scar which is quite big on one side but the surgeon was not very concerned and didn’t want to aspirate as he said it will recur if he does.

Anyways keeping my fingers crossed and pray it will get absorbed soon.

Hope all is well on your side. Have u got the appointment?

Regards

Radley

Hi Radley,

I am glad to hear that you are coping with Letrozole so far. The seromas on either side of the scar are not so good, but I expect that your surgeon is waiting for them to absorb naturally.

I've got my date through for surgery. It's on 4th March, so not that long to wait now, thank goodness.

Thinking of you and, hoping that everything settles down soon.

Kind regards,

Jolamine xx

Hi Jolamine,

Was thinking of you today. How did the surgery go-Hope it went on alright and you are ok and back home.

Regards

Radley

Hi Radley,

The surgeon was very pleasant and very thorough. He explained that if he removed the lesion with a 2½cm margin (the minimum he needs to remove) and the pathology result comes back as benign, then I couldn't have plastic surgery afterwards, but if the lesion proves to be cancerous, then there is no problem in getting a skin graft.

He looked at some of the other lesions on my body and found another suspect one on my right leg, just above my ankle.

I have had 2 excision biopsies, with quite a sizeable chunk removed from both lesions. I have to keep the dressing on my face for a week and go back to the clinic to get the stitches on my face out then. I also have to see my GP to remove the stitches from my leg in 2 weeks time.

I must confess that I was not looking forward to getting the anaesthetic in my face, but both were virtually painless. We'll see what they're like when the local anaesthetic wears off!

The pathology results are not likely to be back for 4-6 weeks - what a time to wait! He was saying that if they turn out to be benign, then he wouldn't operate as he has already removed the pigmented area of both lesions today.

How are your seromas doing, is there any sign of re-absorbtion? You have been on Letrozole for a while now - are you still coping with it?

Kind regards,

Jolamine xx

Hi Jolamine 

Glad your surgery went welL

Guess the worst part is waiting for the results. That is a long wait 4-6 weeks ! Wonder why? 

Hope all will be well in the end and it is worth the wait!

My seromas are no better- but at least not increasing in size.But of late I am getting a lot of discomfort and a bit of pain too. I was wondering if I should call the team and ask their advice- maybe I will as it is 6 weeks since the surgery and I am not completely comfortable.

I am ok with Letrozole so far will have to wait and see how things go in future.

Regards

Radley

Hi Radley,

If your seromas are no better, it might be worth giving your breast care nurse a phone call and seeking her advice.

I'm glad to hear that, so far, you're coping with the Letrozole and hope that this continues to be the case.

Yes 4-6 weeks seems like a life time away to get my results. However, my appointment arrived via the post today and it was for July.  I fear that my consultant's secretary has mistaken 4 weeks for 4 months. I tried phoning her today and left a message for her to phone me back - so far I've had no reply.

Kind regards,

Jolamine xx

Hi Jolamine 

great to hear your surgery went well but results in July!!!! Keep ringing the consultant's secretary. You will be out of your mind by 4-6 weeks never mind 4 months.

Good luck xx

Hi Jolamine

yes I will have to ring and get some advice from the nurse.

4-6 weeks for the results itself is a bit too much and to top it off appointment in 4 months thats crazy! I am sure it must have been a mistake.

Ring the hospital to bring it forward if not at least ring them in 2-3 weeks for the results ( I am sure it would be done by then) if no luck your GP should have a copy so perhaps you can ring the surgery to see if it is there!

Hope it gets sorted out soon for you.

Regards

Radley

Hi Jolamine

yes I will have to ring and get some advice from the nurse.

4-6 weeks for the results itself is a bit too much and to top it off appointment in 4 months thats crazy! I am sure it must have been a mistake.

Ring the hospital to bring it forward if not at least ring them in 2-3 weeks for the results ( I am sure it would be done by then) if no luck your GP should have a copy so perhaps you can ring the surgery to see if it is there!

Hope it gets sorted out soon for you.

Regards

Radley

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 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 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