Hello JodieStarBright29, 

Thank you for sharing your story. It does indeed seem to be a difficult decision to have to take and it's good that you will have the opportunity to see your doctor in a few weeks to discuss the pros and cons and I hope that your doctor will be able to give you the guidance you need to make an informed decision. 

I have had a look in our forum and found this thread which is from 2 years ago but the member who started the thread mentioned being also TP53 so don't hesitate to reply to her post if you wish. I hope that you will hear from others who also have this TP53 mutation and who have faced a similar decision in the past. 

Our nurses are also available on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm so you are welcome to give them a call if there is anything you would like to discuss with them. 

I hope your appointment goes well and that you manage to make the best decision in your particular circumstances.

Best wishes, 

Lucie, Cancer Chat Moderator

Thank you Lucie :)

I have reached out to the original author of the post you linked to me - thank you for that :) 

I will consider calling the nurses once I have spoken to the doctor .. unfortunately I have no questions at the time of my appointment but after a few days things come to mind .. the opportunity to speak to the nurses will be a great help. 
 

best wishes

jodie 

Dear JodieStarBright29,

I'm in similar situation as yours. Stage 3 IBC with lymph node involvement with Her2 positive. 

I have completed 9 weeks of paclitaxel with Herceptin and Perjeta and have 11 more weeks of chemo left. My surgery is scheduled after the chemo.

My genetic testing results came out to be - likely pathogenic for TP53 and the genetic doctor warned me about radiation induced malignancy and recommends me to skip radiatherapy.

Im yet to meet the oncologist and hear from them. I would be happy to hear your experience if you went ahead with radiotherapy or was there a kind of different intervation to mitigate the recurrence risk.

Hoping to hear from you. Thank you

Hey Warrior95,

Thank you for replying to my post. I am sorry to hear you are having to go through this. 

I was also advised about not having radiotherapy. I saw two specialists who advised the same thing. They said due to my age (29 at the time) there is a much higher chance of a reoccurrence due to the radiation. So I was advised not to have it and I didnt have it. 

I had 4 sessions chemo, a year of Paclitaxel and during the Paclitaxel I had the masectomy. Which was nearly 2 years ago now. My hormonal therapy (Tamoxifen and Zoladex injections) has been increased from 5 years to 10 due to the TP53. 

When I last saw my Oncologist, we spoke about me having yearly MRIs which will help to detect any future cancers.  Unfortunately there is not many reports of TP53 and the requirement of yearly MRIs in the UK so they do not consider regular MRIs as a nessesity.. therefore I may need to pay privately (or use private health insurance) to have them as I could get away with one MRI next year as a follow up .. but not as a yearly thing.. however the yearly scans won't start until next year.

Please do let me know how you get on.

Dear JodieStarBright29,

Thank you for replying promptly and sharing your experience.  I will keep you updated about my journey as I go along. I feel strong to hear from someone who was in a similar situation as mine.  It brought a sense of calmness.

Except for one other post, I hardly found anything on the forum about TP53.  I don't know if this is worse than BRCA 1/2 but it seems there are only few members with this TP53 gene mutation.

I do take a Zoladex injection every 4 weeks. I have not been on other hormone drugs (like tamoxifen) since my ER and PR are both negative.  I don't know if that will change because of TP53.

As I understand from your treatment, I will seek different interventions (like extending the chemotherapy with paclitaxel) instead of radiotherapy to decrease the recurrence risk. 

May I know about your reconstruction journey and if the risk-reducing surgery in the benign breast is the same as that of mastectomy in the malignant breast?  The doctor suggested that I can delay the preventive mastectomy surgery in another breast for a later time. 

I was initially told that due to IBC, the reconstruction of the tumor breast will be delayed like one year after the surgery. I'm not sure if this TP53 would alter the plan.

Thank you and I will keep in touch.




 

Hi Warrior95,

Sorry it took me a little while to get back to you - for some reason I couldn't get logged in. 

I was in the same situation as yourself, when I was diagnosed with Stage 2 IBC.. I was considered genetic testing due to my age. I was diagnosed in September 2019 and then the genetic testing didnt happen until December 2019.. I was already through my EC chemo by then! 

So when I was diagnosed in September 2019 - I was considered genetic testing due to my age and that there was no family history of cancer. My treatement plan was: 4 weeks of EC chemo, 12 months of paclitaxel, masectomy and reconstruction (including diep flap) and reconstruction to the other breast. I was then to be put on 5 years of zoladex and letrozole. I also was put for 4 sessions of zoledronic acid for the bones - (I am awaiting my last session now). Lastly, I would go through radiotheraphy. 

I didn't have my genetic testing done until December, so I was already finished with my EC chemo by then. But the results came in for me and my family was also tested after, but found to not have the mutation. So for me, I am a 'de-novo' patient, which means I was the first one in my family line to have the mutation. 

I was on my way with Paclitaxel and I was scheduled for the full surgery in April 2020. However, when April came we were already on our way into the start of Covid and lockdown.. so 2 days before my surgery they told me I would just have the masectomy and wait for the reconstruction - which I was fine with. 

The surgery day came and I was admitted at 7am.. but I didn't have the surgery until 2pm, I think I was out surgery by about 5:30.. I was then discharged at 9pm as they were trying to protect me from any covid risks.. which I was happy to do because I recover better at home! Of course, they checked I was okay and asked me if I was happy to go home.. I didn't actually feel any pain or discomfort so I had no problem leaving!

My results actually found that I had a full pathelogical response.. which meant that they found no cancer in the tissues of the breast. It appears the chemo zapped it away. I was then seen by two specalists who advised me that I should not go down the route of radiotherpahy regardless of the results from the masectomy.. I decided that it would be a good idea not to as well, so I decided not to complete that side of the treatement. 

I had finished my Paclitaxel treatement in Dec 2020. A year after the masectomy I finally had my reconsruction...

Reconstruction took over 12 hours, I was admitted at 7am and woke up around at 7:30pm I think. They had taken the fat and skin from my stomach, reconstructed the cancerous breast and they took out everything from the other breast and then filled that with the fat as well. They also took away my nipple area and made a sort of "window" so they could reopen if they need to later on. 

For the reconstruction I was in hospital for 6 days.. I caught phenuomina after surgery but that was expected - they say if you are under for a long time then it can happen.. I was actually fine the day after surgery, but the second day is when I showed signs.. they took me for an xray and then gave me antibiotics for a few days and I recovered well. One thing they will tell you is that you need to practice taking deep breaths a couple of weeks before your surgery - doing this helps to open your airwaves and reduce the risk of this.. I was actually neglectful with this and so I did not help myself!

I took about 12 or so weeks to heal up and I did make sure to rest during this time. I now have a scar across my stomach, but I am so grateful to them for what they had done - they did a good job. I had a few follow ups with the surgeon and I was offered nipple tattoing.. but I may not go through with that as I actually have a tattoo from my hip on my breast now from where they moved the skin! Everytime I see that I laugh to myself and it's just a reminder of the strength I had to get through all this! 

With you waiting about a year - its pretty much what I had to go through.. I was told that I would have everything at once.. but this was pre-covid and as such it may that they are now having to deal with the priority surgey and then wait for avaliability. However I am not 100% sure so it may be good to check with your Oncologist on that one.. but to me it makes sense, I was going to have three specialists working on me so it may be due to the avaliability of the plastic surgeon. Of course, I was not the only one having this type of surgery.. so the masectomy was part of the treatement, but the plastic surgey had to go on a waiting list. 

Dear JodieStarBright29,

Thank you for the comprehensive write-up about your treatment.  I believe  I will follow a similar timeline as yours more or less.

Glad to hear about your pathological complete response at the surgery time. I was told this is a strong indicator of a positive prognosis.  

The reconstruction indeed sounds like a long surgery with a considerable period for recovery. I will keep this in mind and go for reconstruction when my body is fully healed.  

I generally meet the oncologist weekly but I guess it will be a few weeks for the tumor board to finalize any changes in the treatment plan due to TP53 diagnosis.

I will keep you posted about my treatment and wish you the best. The information you shared is invaluable to me.  

Regards