Help! I'm finding it difficult to move on

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I had a single mastectomy in November 2023 after a very unexpected diagnosis earlier in July. I was told I was too old (79) and my bmi too high for reconstruction and was led down the path of a prothesis. I was too shocked to take anything much on board.

I recovered well from the op and duly attended an appointment for a gel prothesis. But it was horrendous - hot, heavy and ugly. I hated it. I felt like a trussed up turkey. It was not for me, and I decided to just go flat.

But, I have a large, fatty, swelling beneath where my breast used to be. Right at the beginning, I had asked about it and was told ā€œitā€™s youā€! But itā€™s larger than my ā€˜spare tyreā€™ opposite - and it looks like a ā€œdropped breastā€. I find this very embarrassing and upsetting. For me, it actually draws far more attention. I am happy to be flat one side, but with a conspicuous lump further down I look (and feel) disfigured. Because of my worries, I was eventually given an ECG .

I have now had a letter telling me that ā€œeverything looked okay with no abnormality noted in your abdomen, certainly nothing suspicious accounting for the swelling and tenderness that you are getting. I do not think we need to investigate this any further.ā€ So, end of! What do I do? Just live with it?

Surely, I canā€™t be the only woman who has been left with this fatty mass after a mastectomy ? At no point has anyone told me that this is normal/will go away/what to do ā€¦ā€¦ Itā€™s like nobody on the breast team understands what Iā€™m talking about!

Does it mean that I must wear a prothesis to deflect attention from it? (It does help, I know.) Has anyone found a prothesis that isnā€™t hot and heavy? Or, that doesnā€™t slide up (because itā€™s not heavy enough)? Or, will it eventually disperse?

I would welcome any suggestions or comments from anyone else who has had the same concerns. Lump-wise, and/or prothesis-wise?

I am finding it really difficult to move on from this stage.

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I am sorry you are feeling this way. I had a double mastectomy 2 weeks ago and my scars and lumps are scary.

I find upsetting and unfair that you were refused recon due to age. Like if we stop being a woman passed a certain age!

What you describe seems to be a ā€˜dog earā€™ which seems to happen often with mastectomies. If that is the case your team should offer a tidy up . I know every hospital is different but it should be offered as really dog ears are affecting our body image and self esteem.

Please speak to your BC team or BCN. I have had to push and chase so many times and unfortunately we patients have to do a lot to get listened to.

Otherwise not sure how big your breast is but have you tried knitted knockers? They offer free knitted or crocheted foobs and can give you small weights if you find them too light. They also make some for swimming. I canā€™t use mine as it is too early and I am still in pain, a lot of women find them more comfortable than heavy prosthesis.

I am sending you a big hug and hope that something can be done soon so you feel better.

Marion xx

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Thank you so much, Marion! I shall call my SBN on Monday. I do feel fobbed off at times, however nice they are. But I do feel I canā€™t go on like this. Itā€™s good to know that others have trouble being heard too. So thank you.
I do hope you are soon feeling more comfortable very soon and sending love and (very gentle!) hugs. Thank you for taking the trouble to reply to my post when you are at such an early stage of your recovery. Thinking of you. Xx

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Thank you @mollymoo1 and no trouble at all.

I have had tough times since being diagnosed in January. A long way to go still as I have to decide whether I accept more chemo for 9 months or not. My 16 rounds before surgery were so challenging I donā€™t think I can have more! My onco and surgeon are not very helpful, it is basically up to me to decide without any data.

I am glad I have had a lot of support from patients on this forum and also from Flat Friends UK which you may find useful.

Big hugs and good luck on Monday

Marion xx

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I had a single mastectomy in August 22 and like you hated the silicone prosthesis. I found it heavy bulky and it didnā€™t sit properly as my chest is very uneven due to having some of my chest muscle removed. I have a great bcn and she told me about a new weighted softy they had just got in and she kindly sorted one for me . Ask your bcn if they can provide one ive found it a lot better. Hope you get sorted x

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Iā€™m sorry you feel so distressed by your appearance after the surgery you had and how your treatment team seem to have dismissed your feelings and concerns.

Rather than being a dog ear as has been suggested I wonder if it is a natural roll of fat. I also have them and can see that the one on the left under my mastectomy scar is somewhat larger than the one on the right. I am not exactly sure why this is but think it must just be due to the way the skin has been reattached after the removal of the breast tissue. I can certainly pull the skin upwards slightly towards my scar and it then reduces in appearance somewhat, looking more like the right hand side. I donā€™t know if this is something that could be corrected by surgery or not.

I canā€™t offer you any real advice over different prosthetics as I personally donā€™t use anything.

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Hi, I am 73 and had a single mastectomy and lymph node clearance 5 years ago. I have found Amoena ( they are online) or if you are near their shop is in Eastleigh Hants.(Appointments only) The ladies online and face to face are very professional, helpful and kind, they do all sorts of prosthesis to put in bras as well as all sorts of lingerie. I have worn one of their prosthesis in an M&S pocketed bra but they do fit their Amoena bras better. They do a returns service so possibly worth a try. Hope you find what you want. Take care.
Sunshine 21

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Hi does sound like what we call dog ear must admit mine has lumps each end of scar , I had right mastectomy did have implant which was removed after I had bad infection , I am flat one side I use a softie sometimes was given at hospital I also use knitted knockers which is a charity they are free and very soft , as you said the nhs ones are very heavy and hot
Speak to you BCN nurse they can arrange to see a plastic surgeon to tidy things up thatā€™s what they have offered me.
Good luck xx

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Hey, it took my a while to find a prosthesis that i liked. These are the ones Iā€™ve tried.
Theres a memory foam lighter one but I found that got hot in summer.
Theres a weighted foam one but that is a bit heavier not as bad as the silicone ones.
The one I liked the best was active flow one. Its got beads in and you can kind of mould it abit. Its light weight, doesnt move much for me. I think its called a Truelife active form.
I did have to be very firm with the prosthesis fitter at the hospital as she was very into giving the silicone ones. Also found it odd that I didnt like it. I asked for more lighter ones.
Can you go back for another prosthesis fitting and discuss with them about different ones?

Hope this helps a little bit.

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Oh I totally get the frustration with prosthetics. I found an amazing company called boost that produce light weight funky prosthesis. It can be worn with any bra & during exercise & swimming. I donā€™t sweat in it at all as it is breathable. Check their website out https://wewearboost.com/?gad_source=1&gbraid=0AAAAAoz3Hpgo7iv8MrkB4eAL_KZw2DXjt&gclid=EAIaIQobChMI9tGghqvEiAMVvZJQBh38CiIzEAAYASAAEgL0yPD_BwE

All best wishes. X

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I had a single mastectomy 1yr ago. My scar is uneven and lumpy, not like the lovely flat even scar that we are led to believe due to certain charity tv adverts. I have tried many different types of prostheses, but the best and most soft and comfy are made by the lovely ladies at knittedknockersuk. They are lovely.
Take care of yourself xx

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Hi so sorry for your upset, as if the diagnosis and treatment isnt upsetting enough! Ive experienced ā€˜casualā€™ care from bcns redulting in s 6 week haematoma, which didnt please my surgeon. Sorry, I digress. I had to push for a different silicone form initially and seappped the cheap Trulife for an expensive one. But after my 2nd mx I chose to buy the weighted leisure (foam) form, from Nicola Jane, with a silicone centre. I started with a size 10. After my decond mx I could choose my new size so was able to reduce and chose a size 7 both sides. Just a couple of weeks sgo my private lymphodaema nurse introduced me to Boost forms which look great. Knitted knockers were a fantastic fot but too light for me being so big (36-38) and rose up. Also, I chose a second mastectomy over recon in order to choose my size. Wishing you good luck and keep looking until you are happy.

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Thank you for that, Tricia. Iā€™m calling my bcn later on today so will definitely ask her about it. Sounds a possibility, especially as you felt the same as me about the awful gel ones. Thanks again.

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Yes, I have a knitted knocker and Iā€™m going to give it a try again, especially now that the weather has cooled down. In fact, Iā€™m wearing it now! So thanks for the prompt! Hugs. x

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I have looked at boost and would love to try, but Iā€™m a size 10 too and I think it would be too light for me. I might give it a try though. Thanks for your help.

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Thanks, Iā€™ll have to try them. Hopefully they have got more stocks in as when I last looked a few months ago it looked that they were having difficulty in getting the larger sizes. But I must do something now as itā€™s really getting me down, Thanks so much for sending that on. x

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That has helped at lot! Thank you so much. x

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Thanks again, Marion. I did get hold of my bcn who wasnā€™t terribly helpful and suggested I have an appointment with my surgeon to talk through. I didnā€™t see the point of that considering he was the one who had left me like this. It would be very difficult and intimidating. I was then told that there were 2 new female consultants on the team and she could get me an appointment with one of them. And I jumped at the chance! Itā€™s a start ā€¦!

I do hope your pain is diminishing and you will soon be able to wear your KK. I do have one and it is very soft and gentle (a gentle cuddle!) but i still need some weights so will send for some. (They are amazing ladies!)

With hugs & best wishes M xx