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Having Deip flap recon with lymph node transfer 8 years after diagnosis !!!

9 REPLIES 9
whitelily
Member

Re: Having Deip flap recon with lymph node transfer 8 years after diagnosis !!!

Hi lisa_lisa not sure if you still come on the forum just wondering how you are getting on now after your surgery and how is the lymphoedema? Have you noticed any improvement after your lymph node transfer? I had tram flap reconstruction done 4 months ago. I didn't have lymph node transfer but feel so much better just having the implant removed all the tightness has gone from under my arm which I think was making my arm worse. Time will tell if my arm Improves. Hope you are doing ok xx

evs_71
Member

Re: Having Deip flap recon with lymph node transfer 8 years after diagnosis !!!

Shame about the seroma and hospital being so far away.  I hope you're recovery improves and you get to enjoy Christmas.

 

Take care xx

lisa_lisa
Member

Re: Having Deip flap recon with lymph node transfer 8 years after diagnosis !!!

Hi thank you so much for your reply . I am now 3 weeks post op and whilst in hospital I did really well showering myself and blow drying my hair even day 2 !!! Things havent gone great since having drains removed and returning home i have developed a large seroma around my groin area the area that the Lymph nodes were taken from it has meant I had to return to hospial 3 times to have over 2 liters of fluid drained and as The hospital is well over an hour away its not been ideal . I did try to go to our local a and e but they wouldn't touch me as the procedure I had done they were unfamiliar with . I do think the seroma has hindered my recovery as when I have it drained I feel almost normal again until it has re filled on the last visit they injected steroids in as this is meant to prevent the build up so fingers crossed . My op was  9th November and I find it hard to believe December is upon us and do feel Christmas is going to pass me by but onwards and up wards and Im sure I will make up for it next year.

 

Regarding lymph node transfer I do think i may have been a bit naive due to the new fresh skin fat ect which has made my new breast it feels instantly less tight as my trunk was also effected by my lymphadma and it gave me lots of pain my arm looks fab even though I was told it would swell due to theatre but it has not. How ever my leg on the side lymph nodes were removed has become swollen I have aired my fears and concerns but have been told it is early days and that the swelling which i do have on most of my left side is post op and not due to lymph removal.

I have been told by all surgeons I have seen since that only a few are removed and the groin leg area have more that enough lymphs to compensate I do hope this is true as to develop lymphadima of the leg would be my worst nightmare but I think the seroma area is worsened due to the lymph clearance so it may be that you have made the right chose i just have everything crossed that it settles down .

thanks again for your reply and all the best with your sergery .

lisa_lisa
Member

Re: Having Deip flap recon with lymph node transfer 8 years after diagnosis !!!

Hi thank you so much for your reply . I am now 3 weeks post op and whilst in hospital I did really well showering myself and blow drying my hair even day 2 !!! Things havent gone great since having drains removed and returning home i have developed a large seroma around my groin area the area that the Lymph nodes were taken from it has ment I had to return to hospial 3 times to have over 2 liters of fluid drained and as te hospital is well over an hour away its not been ideal . I did try to go to our local a and e but they wouldny touch me as the procedure I had done they were unfamiliar with . I do think the seroma has hindered my recovery as when I have it drained I feel almost normal again until it has re filled on the last visit they injected steriods in as this is ment to prevent the build up so fingers crossed . My op was  9th November and I find it hard to belive December is apon us and do feel Christmas is going to pass me by but onwards and up wards and Im sure I will male up for it next year.

How are you doing hows your recovery going .

whitelily
Member

Re: Having Deip flap recon with lymph node transfer 8 years after diagnosis !!!

Hi evs_71 my surgeon has said the same that moving healthy fresh tissue to the area can help. You sound like you are doing great after only 8 days. I am hoping the Diep will help with my lymphoedema as I have so much scarring under my arm it has been removed once but keeps coming back. Lisa_lisa I hope you are doing ok after your op x

evs_71
Member

Re: Having Deip flap recon with lymph node transfer 8 years after diagnosis !!!

I had MX with expander implant and full axillary node clearance last year.  Chemo and Radiotherapy too.  I developed lymphoedema in my arm and hand, which got much worse after radio.  Anyway, I was planning the DIEP flap surgery and asked my consultant about lymph node transfer and he and his colleague were willing to do it.  We talked about the risks of lymphoedema from the donor area and I took some time to weigh up all the pros and cons and see how things were after my hoiday and being back at work for a period of time.

 

I have really managed to deal with the arm/hand lymphoedema and have occasional MLD and do some simple drainage at home, so much so that my arm had gone down from 13% to 4% difference compared to my good arm.  I decided that I didn't want to take that added risk of the lymph node transfer, so would go ahead with the planned DIEP minus the node transfer.

 

I had my DIEP flap surgery 8 days ago and I'm doing really well.  Initially my hand swelled up in hospital, but it does so during any periods of immobility, but my other hand and both feet were puffy from all the IV fluids they gave me in the first few days.  My surgeon released a lot of scar tissue from under my arm during the op, and plumped it up with some tummy tissue, and was hopeful that in doing so, the lymphoedema may improve anyway.

 

I'm looking at my hand today, and I think this is the best it has looked since my lymphoedema first appeared last year.  He has always said that the research to back up node transfer is a bit sketchy, but that the DIEP flap surgery alone can lead to an improvement in lymphoedema due to replacing old scarred tissue with nice healthy stuff.

whitelily
Member

Re: Having Deip flap recon with lymph node transfer 8 years after diagnosis !!!

Hi lisa_lisa

 

i have been offered the same surgery but as there is a risk of lymphoedema developing from the donor site it has put me off. I hope they have explained this risk to you as it is important and something we should be made aware of after all it is our lives that would be affected. At the moment I am just going to have Diep on its own. I have lymphoedema of the left arm.

 

Steph J
Member

Re: Having Deip flap recon with lymph node transfer 8 years after diagnosis !!!

Hi Lisa 

Goodluck with the node transfer . It sounds amazing . Im only at the beginning of my journey but I come on here most days and read through the threads ..Iv learnt so much . 

I wasnt aware of the procedure that youre having and I hope you keep us updated on your progress . Big hugs and best wishes Steph xxx

swampy1901
Member

Re: Having Deip flap recon with lymph node transfer 8 years after diagnosis !!!

Hi lisa_lisa

You certainly seem to have been through the mill - I have no idea what the pioneering lymph node transfer is all about - but I'm all for new treatments as they are the only way that we can improve the future of all kinds of cancers.  So far my only contribution in this kind of field has been to donate my leftover Diep flap operation tummy bits to be used for stem cell research essentially for future breast care options but also other cancer and growing treatments for other parts of the body.

So with the DIEP flap - i'm probably about the same BMI as you and this wasn't a problem because it meant there was plenty of material for the reconstruction of the breast. Originally my surgeon was going to go slightly smaller on the mx and then reduce the other breast to match at a later date. In the end she put in more to the reconstruction with a view to avoiding a further operation at a later date.So far it's looking pretty good - fairly evenly matched with the option of a possible construction of a nipple or tattoo later when all other treatment has been finished.

The only minor set back has been a haematoma which caused problems to the tummy wound which has resulted in a longer healing time meaning quite a few  extra visits to hospital, district nurse visits for numerous dressing changes and eventually I had a TVN unit attached to speed up the healing process. It did the trick - my consultant today was confident that one or two more dressing changes and all should be well and complete. But set-backs like that happen to very few people - they are a risk and as with all operations they spell out all the risks.

Good luck with the operation and stay positive - as you say - this is for you and with the pioneering surgery too - you are helping to set a new standard in cancer care.  A Brilliant contribution!!

lisa_lisa
Member

Having Deip flap recon with lymph node transfer 8 years after diagnosis !!!

Hi Guy its been quite a few years scince ive posted which i surpose can be looked at as a positive thing .

After being diagnosed with grade 3 breast cancer , mastectomy ,chemo ,radiotherapyand was left with lymphadia of the arm and trunk .

As the treatment really knocked me about I decided I needed to concentrate on getting better as I had a young family to look after and as Im a control freak i needed to back to my old self (if thats at all possible )

.

So here I am 8 years on I have been offered pioneering lymphy node transfer where they will take lymph nodes from my groin and harvest them in my upper arm pit area I think !!!!!

Also I am having prevenative mastectomy ( which I have had to fight for) and reconstruction taken from my stomache  area i have been working hard on getting my bmi to 30 im slighlty off but not by much .

I Just woundedred if anyone else has had or heard of these procedures  and what to expect ,

operation is booked for 9th November so not long to wait now nervious but a little excited at the same time   as for the first  time im doing  something i for me .

 

thanks in advance 

 

Lisa B