Sarcoma and my daughter

[Superwoman]

Evening my fellow MPNs

Not sure if you remember I spoke about my daughter having Parosteal Osteosarcoma, again another very rare cancer like ours about seven weeks ago now, well this week she has had her operation on her thigh, this was the removal of her thigh bone and replaced with a Titanium bone and some of the soft tissue., which had some suspicious looking cells. The operations went well on a Tuesday and she is now starting her journey to recovery, she will be discussed next week at an MDT meeting to see if she will need Chemotherapy, but the consultants have said that they got good clear margins which is hopeful.

With the situation and Covid she is having to go through all of this on her own, and being on a ward with patients who are having amputations was a little upsetting, but she has really come into her own with encouragement to the other patients to try their best which they are truly grateful for and has made some amazing friends.

One lady has lost her foot and ankle to Sarcoma but Laura has been so helpful the physio’s are really grateful for all her encouragement, it’s also helping her, the strange thing is it’s women that are more prone to getting a Sarcoma between the ages of 20-40 and then the older generation in their sixth and seventh decade, also children can also get Sarcomas.

They are now hoping to bring this type of Cancer to the attention of the media as a lot get missed by GPs especially now that most doctors are doing virtual or telephone consultations they are being missed, got to get back to face to face consultations, I just thank god that my daughter insisted on seeing her doctor when the pain became so bad.

Anyway thought I would let you know how thing we’re going.

Keep safe

Jean x

[friendofpiglet]

I hope that everyone on this forum will join me in wishing your daughter will make a fine recovery.

Andy

[Superwoman in reply to friendofpiglet]

Thank You Andy

[mhos61]

Hi Jean.

I have wondered how things are. Really pleased to hear that your daughter has come through the operation ok. I’m sure ‘Good clear margins’ are the most beautiful words for you to hear right now.

Now the hard work starts!

As I mentioned in a previous post, my friend had sarcoma of the thighbone over 40 years ago age 26. I remember how upset she was at the prospect of amputation, as that was expected back then. However, Birmingham hospital offered her a relatively new procedure of replacing the diseased bone with titanium plates. It was a relatively long road to recovery, torturous physio etc, but the outcome was successful. I’m sure this procedure has advanced somewhat since then too.

Covid makes it all so much harder. I can’t imagine the additional impact this has had on you all. It sounds like Laura is getting through this by helping others. We all find our way.

I hope Laura continues to do well. Hope you’re looking after yourself too.

Best wishes

Mary ❤️

[Superwoman in reply to mhos61]

Hi Mary,

Yes not bad myself, but the stress of it all is taking its toll on me.

Laura is now home, and all they have given her is a piece of paper with exercises for knee replacement, well I could of shown her how to do them as I had a total knee replacement five and half years ago, and any physio will have to be done on Zoom.

Consultant saw her yesterday morning to say he was really pleased with the way it went, although she now has a scar from her hip to her knee, and said she is going to wear it with pride as she thought she might of lost her leg, he said that the suspicious part of the Parosteal Osteosarcoma was also removed with good margins, and he is hopeful that once the test comes back on it he feels that it might only need radio therapy and maybe not even that so keeping fingers crossed.

Thanks for your good wishes.

Jean

[socrates_8]

Hey Jean...

Sounds like your lovely daughter Laura is made of all the 'Right Stuff' and obviously gets it from her mum...

That sounds like quite an ordeal for someone to have to go through, at any age... and naturally let's all wish for her a very speedy recovery...

Very best wishes Jean, stay safe & well...

Steve

[Superwoman in reply to socrates_8]

Thanks Steve

[piggie50]

Hi Jean,

Laura sounds like a very tough lady. I’m glad the ops went well. I hope her recovery is good. You must be so relieved Jean.

Very best wishes to you all.

Judy xx

[Superwoman in reply to piggie50]

Oh I am

X

[Elzbietta]

Very best wishes to brave and supportive you and your brave daughter. Elzbietta xxx

[Nickthedevil]

What a brave girl. Best wishes for her speedy recovery x

[Susana7]

All the best for your daughter Laura and her recovery. What a wonderful strong woman she is, advocating for herself, insisting on seeing a GP and now finding the strength to help others in the ward. Wishing her all the best xxx

[Mazcd Partner MPNVoice]

Dear Jean, so pleased to hear that it all went well for Laura, and I wish her a speedy recovery, and how wonderful that she is helping other people in the ward, what an amazing young lady, all good wishes to her, and to you and your family. Maz x

[Superwoman in reply to Mazcd]

Thanks Maz

She is determined to make sure that other people mostly young women and adults in their sixth and seventh decade understand how important it is to get these type of lumps checked and not just palmed off with it’s a pulled muscle. As my daughter has said the pain is pure evil so how can it be just a pulled muscle!! Thank god she insisted that she have a second opinion.

This is the trouble with these rare type of cancers GPs just don’t understand them, so then it all becomes too late, especially now that everything is done over the phone or FaceTime and Zoom, it’s so very sad that Covid has a lot to answer for especially cancer sufferers.

Keep safe

Jean

[Helen1952]

Hello Jean

Have just caught up with this

Your daughter sounds very strong and brave that op must have been painful

Sending you and her positives vibes for a good recovery and outcome

No matter how old they are still our babies sending you lots of love

Helen xxx

[Superwoman in reply to Helen1952]

Yes I explained that to my grandchildren yesterday, saying that she was my baby.

[Otterfield]

So pleased to hear that it's going well. Please keep us all up to date so we can keep supporting you x

[Superwoman in reply to Otterfield]

Thank you

[babbittybumble]

Hello Jean. So pleased Laura has had her operation and doing well.Please send best wishes to her. Bye Gill

[amhann]

Hello Superwoman - just to add my very best wishes for a full recovery for your daughter - it has been a tough time for you all. Anne-Marie xx

[Superwoman in reply to amhann]

Thanks

[hunter5582]

So glad to hear your daughter made it through the surgery successfully. The results sounds quite hopeful. It sounds like she is quite resilient and will find her path to recovery even with the current challenges. It is great that she is able to reach out and help others despite her own current situation. That demonstrates great strength of character. Laura sounds like a true blessing to have as a daughter.

All the best to both of you.

[Superwoman in reply to hunter5582]

She truly is.

X

[Cja1956]

So happy to hear that the surgery went well. I pray that her road to recovery goes well. She does sound strong and resilient.

All the best,

Cindy

[Superwoman in reply to Cja1956]

Hi Cindy,

Yes is a very strong lady, even though she was very premature when she was born, and has made up for it over the years.

X

[azaelea]

Sorry I'm a bit late replying but so very leased to hear Laura has had her operation and things are looking very positive. She sounds like a lovely girl helping the other patients with her positivity. Hope her onward journey to complete health isn't too hard and sinful. Best wishes to you all. Franxx

[Inca]

Very Best Wishes to your brave daughter and to you I know you too will be suffering with her,a dreadful disease we don't know about,ours is rare enough .My daughter has a rare condition which was only found after an accident when her head was scanned,the pain and worry for me and her father far exceeds the concern of my P V,especially for hubby who now has both of us with life threatening conditions .My thoughts are with youJean.

[Aime]

That’s great news! Xx Aime 😻😻