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DCIS. - confusing information

167 REPLIES 167
Coralie Stephney
Member

Re: DCIS. - confusing information

I agree. I didn't want to give them an opportunity to put my premium up. We are both cancer free and the doctors told me that I must be able to do a emergency stop and rest for 6 weeks. We both done that. Lol
schumi12
Member

Re: DCIS. - confusing information

Thanks Coralie, that's great.  I'll be out in my little car later, I did have a short drive around with my husband yesterday and I felt fine.  Someone mentioned that we ought to tell our insurance compnay but if the general adivce is 6 weeks and I'll be 7 weeks tomorrow then I won't bother.  Thank you xx

Coralie Stephney
Member

Re: DCIS. - confusing information

Hiya. Schummi I'm glad your wound has healed up. I've been driving alot now. They say the first 6 weeks so it's 6 weeks now. I didn't contact anyone. I think you'll be fine. Just ease in slowly like Steph did. Once you get your confidence back you will fly. Sending hugs.
schumi12
Member

Re: DCIS. - confusing information

Hi Coralie,  I haven't started driving yet but I feel ready to.  I'm not sure if I need to contact my insurance compnay first.  I certainly feel like I could do an emergency stop.  My infection has cleared up now and it was only quite small.  x

Coralie Stephney
Member

Re: DCIS. - confusing information

Have you been able to drive Schummi or is it difficult with your wound infection? I m doing more walking than I've ever done. I can't wait to get my nipple now lol
Coralie Stephney
Member

Re: DCIS. - confusing information

Ah so worrying, but glad the cream is working well. I hope all clears soonx
schumi12
Member

Re: DCIS. - confusing information

Hi Coralie, it was on the outside luckily not too big.  I had a week of penicillin which didn't do anything but then the GP gave me clarithromycin which seems to be doing the trick.  The surgeon explained that's it's quite common and nothing to worry about.  I had images of the whole scar opening up!! x

Coralie Stephney
Member

Re: DCIS. - confusing information

Good luck poppyfields
Coralie Stephney
Member

Re: DCIS. - confusing information

Ahh congratulations Schummi. It feels good to be cancer free. How did you know about the infection in tummy scar? Was it internal or on the outside? What did they do? Sorry to hear about your chest infection too. Awful to cough with what we had done. Hope you feel better soon.
Poppyfields
Member

Re: DCIS. - confusing information

I'm really pleased for you!!! That's such good news!
I'm going to take a break from the forum now but will check back in during July when I have my follow up mammogram.
I wish you all well over the forthcoming weeks and months. Thank you so much for your support these past months.
Take care.
PF
Xx
Steph J
Member

Re: DCIS. - confusing information

Fantastic news Schumi .. I was wondering where youd gotten too as well .. so good to hear your news . Good luck and take care ... Steph xxxx

schumi12
Member

Re: DCIS. - confusing information

Hi Coralie and Poppyfields, thank you so much for thinking about me.  I haven't posted for awhile because I've had an awful chest infection and an infection of my tummy scar.  I saw my wonderful plastic surgeon today and I got the all clear - cancer free!!  So we really are 3 out of 3!!  I just feel so relieved and now I can get on with my life.  Thank you to all the wonderul ladies on this forum, your support has been amazing.  I really must stop now because I feel so tearful, but they are tears of happiness  THANK YOU xx

Coralie Stephney
Member

Re: DCIS. - confusing information

Hiya Schummi. How was your RESULTS? How are you now since your operation? I feel really good although some days I go back to bed for a couple of hours and other days I have energy. I started driving yesterday and felt good. I did try and have a massage but couldn't lie on my stomach. Too tight.lol how are you all coping?
Poppyfields
Member

Re: DCIS. - confusing information

Hi. Hope you are all doing OK. I was wondering if Schumi, you got you results? Sorry if I missed a post.
Xx
Coralie Stephney
Member

Re: DCIS. - confusing information

Yes Steph you've had your fill of outside stress, so you have to focus on you now. I'm sure with your new body you'll be back in the saddle. Your younger than me so some normal lubricant will be ok. The YES oil based range is grate. You can get on line or at Holland and Barrett. Lol The doctor prescribed the Estradiol creme because i had a mild cystecell. Bulge in bladder which seems to have sorted out at the moment. Im really enjoying getting up fir my son then going back to bed for a couple of hours. Never had the opportunity before. Won't when im back at work lol hugs to all
Steph J
Member

Re: DCIS. - confusing information

Hi Coralie 

We certainly have been fortunate and for that I am very grateful . And believe you me I have had a lot of stress to put up with at the same time and in a very strange way if Id had to go to work during this period I dont think I would have coped at all . Being home has helped me enormously even though I shouldnt have  had to put up with the family problems at all. But hey ho eh ! Iv recovered anyway .

I was worried about coming off my HRT too ... Ill have a look at some of your suggestions because I dont like these sweats .. As for vaginal oestrogen  .... well I havent had to worry about that for a while lol . But who knows with my future new body I might be lucky ha . Take care ..big hugs xxx

Coralie Stephney
Member

Re: DCIS. - confusing information

Hiya Steph. Well good job you and schummi researched Diep as i went in and said i want a DIEP and your story was what inspired me to research it and then Schummi confirmed it for me. I read a lot about rejected and failed implants and a girl at work had a later reconstruction with the muscle from her back. Looked good and she was also happy but it was with an implant and i wanted natural tissue. I had a friend whos now passed away; but she had one of the early DIEP. Never knew what it was called but she was pleased with loosing her belly fat 15 odd years ago. I remember her saying how painful it was and she wouldn't do it again. Thats why i was glad to speak to you and Schummi here cause i don't think it was as bad as i thought and im loving my flat tummy and new boob. I would certainly not entertain a wait and see approach. You were given early diagnosed for a reason; thankfully and if i found any cancer in the ither breast, it would be masectomy using my bum as you can't take from your tummy again.
As for HRT, i thought I'd kill people if they took away my HRT, so i had to convince my self on a alternative. As i said i take HTP5 instead of antidepressants and they are brilliant before bedtime. My HRT alternative was Cannabis oil from Amazon. CBD brothers oil capsule which is legal as it has no high in it. I originally bought them to stop the cancer. Well it worked in a different way for me. It helped me sleep, therefore not waking up and sweating, and helped the pain in my knee. I do get hot at night, especially with all those pillars ect but i sleep through getting my sleep patern back. Remember we were woken up every half hour to check the boob. I found it hard initially to get my sleep patterns back. I also have heard that red clover oil helps but I've not tried it. I also take in the morning the L CARNITINE and the alpha Lipoic acid which is best in the morning. Its cellular protection and is supposed to help with healthy cell renewal, which i read about on some nutrition thread on here. I do get hot but i now sleep all night. I used to take HRT and vaginal oestrogen cream too. Ill miss that one when im active again. Lol hugs to all
Steph J
Member

Re: DCIS. - confusing information

Hi Coralie 

further to our conversation . No I didnt actually ask for my diep but I did mention it.

Id met two women , one had had an implant and the other had the tissue from her back with implant . 

I just listened to them and both were very happy with their results .But afterwards I decided that I fancied the diep as it was my own tissue and if I had to undergo radio I didnt want the risk of shrinkage or tightening .

Id already researched the options and  when I had my appointment and was asked about what thoughts Id had  I said I didnt actually see there was much choice but to have the mx in view of my DCIS being   widespread . 

It was the Consultant who then said she was happy Id come to that conclusion by myself but there was the option of do nothing and mentioned the trial . 

Once I said I didnt think that was an option for me she then went on to what she could do for me and I said I had read about a diep and it was then that she said as I had time on my side she felt the best for me was a diep but she didnt perform them and would refer me on to the plastics team . So I guess I did let her know what I did want and fortunately for me she must have thought I was a suitable candidate . The rest is history as they say ! 

Im so glad you seem to be doing so well .. and taking the opportunity to rest too . 

Im also doing well I think ha ... I am having some night sweats now as Im no longer able to take my HRT and I can be awake into the early hours . Im not complaining though as Im fully aware how blessed Iv been . If you have any remedies for these sweats I would give  it a go ...Iv been too scared to try off the shelf because I know I have to be careful of the ingredients. You seem to be quite knowledgeable ...so Witchie any ideas for me ?? xxxx

Steph J
Member

Re: DCIS. - confusing information

Hi Ali 

Sorry to hear that youre feeling low . I hope its only a minor blip and youll pick up soon . Big hugs & fairy dust Steph xxx

Coralie Stephney
Member

Re: DCIS. - confusing information

Hiya Ali. Im sorry that you are going through that now. My euphoria may take a dip once im back at work and start to worry about the other boob. My friend had a lumpectomy, then chemo and she just finished radiotherapy. She has been quite upbeat with the chemo despite making her so ill, but the 3 weeks of radiotherapy has made her so depressed also. Ive been taking HTP5 with is wonderful natural serotonin builder. Try itx big hugs
Ali49
Member

Re: DCIS. - confusing information

Coralie you have done and are doing so well. Well done to you. I am having a bit of a low at the moment. Felt so good after finishing radiotherapy but 7 weeks later it all seems to be hitting me. All healed physically and my BCN tells me this is all a normal reaction. Hope you continue to get better everyday xxx
Coralie Stephney
Member

Re: DCIS. - confusing information

Hiya girls. How are you all doing? Im enjoying the brake from work and packing ib lots of catchups and lunches. Im careful though to not undo all the good work, so i go for a long walk with my dog. The more im walking, the less out of breath i am. The wounds have largely healed on the outside and im doing my excercises carefully. I fall asleep in the day for an hour or so and then i feel energised. The only pain ive got from the operation is very slight on the breast bone. In fact the real pain is from my knee, which has been there on and off for years. My itching settled down very quickly and i now can sleep on my left side. Masectomy was on right. My client made me a heart shape cushion for under my masectomy arm and it really helps to sleep with it under my arm. I can't believe such major surgery has really made me feel quite elated and happy. I really feel the cancer is out now. Although it was just 3mls left after the previous operations, i know this was the right decision for me. Good luck for the results schummi, and all the girls next stagex hugs for all
Poppyfields
Member

Re: DCIS. - confusing information

Thanks Ali49 and Stephj. Yes, it's like a conveyor belt isn't. Finish with one thing and straight on to the next! Will defo keep in touch! And hey, maybe there is some exercises I can research to "rebuild" my boob!!

Take care

Xx
Coralie Stephney
Member

Re: DCIS. - confusing information

Thats what i was asking about too, yesterday. I want my nipple back lol
Steph J
Member

Re: DCIS. - confusing information

Hi Poppyfields 

Iv just giggled at your post ...youre off to research your partial prosthesis ! .

Less than 48 hours it was all about your results .... and complete fear ...now youre off planning next phase ha .

I was doing the same the other week ..checking out nipple recon ...How resilient we all are !!! Its a crazy place .Big hugs XX

Poppyfields
Member

Re: DCIS. - confusing information

Thank you all so much. You have been so supportive and helpful throughout. I really wish you well with your post op recoveries and moving on. Schumi, i hope your results are good too, lets go for the hat trick. I will check in and see how you are all doing.Im off now to research partial prosthesis. ....

Much love, hugs and best wishes.

Xx

schumi12
Member

Re: DCIS. - confusing information

Hi Coralie, I'm pretty sure my results are back but I don't see the surgeon until 2 March and they won't give the results over the phone - my hubby did ask.  I'm just putting it all out of my mind for now, I know I'll get anxious the couple of days leading up to the appointment.  On a positive note I felt like I had really turned a corner yesterday.  My back didn't hurt nearly as much as usual, I did my longest walk so far and I felt great. I feel so much better than I thought I would 4 weeks post op. xx

Steph J
Member

Re: DCIS. - confusing information

Hi Poppyfields 

Good to hear your news .. so pleased that it was positive . What a relief ! Upwards and onwards now . Big hugs ...Keep in touch Im sure we'll all be sending you lots of cyber space love ...and hoping your booby doesnt shrink too much more . xxx

Steph J
Member

Re: DCIS. - confusing information

Arhh Coralie ...Wonderful news mwah ..... big kissses and hugs for you . Im so pleased , so keep on taking it easy for a while ..no running before you walk missus . Catch up soon xxxx

Ali49
Member

Re: DCIS. - confusing information

Great news Ladies and such a relief for you both. Well done xxx Schumi hope the 2 weeks go quickly xxx
Coralie Stephney
Member

Re: DCIS. - confusing information

Ah im sure you will. Its strange its took your histology longer to come back. Guys is a research hospital. They want to do a research on my skin and blood today for future genetics potential to DCIS. It will take 2 years. The doctor said today that whether its high or low grade DCIS, and you have a mastectomy and no invasive found, then there is no need for further treatment. Feeling relieved and im sure you will get same results.
schumi12
Member

Re: DCIS. - confusing information

Oh Poppyfields and Coralie I'm so happy for you both.  What great news, just hope I can join in the celebrations when I get my results in 2 weeks time xx

Coralie Stephney
Member

Re: DCIS. - confusing information

Ahh thankyou Poppyfields. If you've only got one boob smaller but your clear, that's great in the scheme of things. I had hoped for that outcome before Christmas. It wasn't meant to be. We went out and celebrated at the shard. I had 2 cocktails and went home to bed. Lol emotionaly drained. You go and celebrate. No more operations! Love your 2 boobies.
Poppyfields
Member

Re: DCIS. - confusing information

Hi. Had to wait around 90 minutes at hospital this morning which was torture but good pathology results for me!! High risk lesion 9cm*4cm was removed. All benign. Follow up mammogram in July. Then if OK yearly then if OK back into the screening programme. Surgeon said it will take 1 year for boob to settle completely in to its new size and shape so no point in contemplating any form of corrective/symmetry surgery for a year+. Just hope it doesn't shrink any further than it already has done this past week! I'm very relieved and glad to no longer have this "thing" hanging over my head, although I'm not really sure that it's completely sunk in yet... . I feel lucky to have come out of this with just one boob smaller than the other.
Coralie, that's great news you don't need any further treatment and I'm really happy for you.
Gin and Tonic's all round. Xx
Coralie Stephney
Member

Re: DCIS. - confusing information

Hi Poppyfields, did you get on? I hop good newsx Steph, Schummi Ali Princess, thanks for the support. Went for results this morning, and they said they only could find 3 more ml of low grade DCIS. There had been some high grade DCIS after 2nd operation but it was all mainly low grade. Consultant said no more treatment just yearly mamagrams. He said i was lucky because of the bleeding sign as all stemmed from nipple outwards. I came out and despite good news, burst into tears. We went to the Shard to celebrate for lunch. Physiotherapist was happy with me too and added more exercisesx hope you all doing good. Bit emotional day
Poppyfields
Member

Re: DCIS. - confusing information

Wow... Spooky!!! Thanks all.... You guys are getting me through this..... Here's to no more treatment for us all!!

Best wishes. Speak later.
Xx
Coralie Stephney
Member

Re: DCIS. - confusing information

Thankyou Steph. Good luck Poppyfields. I had my first sleep on my side and slept uninterrupted last night. A client had made me a special heart shape pillar for under my arm, and it was so soothing to the breast. Apparently it's designed for mastectomy ladies. Brilliant.
Steph J
Member

Re: DCIS. - confusing information

Hi Coralie 

Good luck with results .Thinking of you xxx

Steph J
Member

Re: DCIS. - confusing information

Good luck Poppyfields ...Thinking of you xxx

Coralie Stephney
Member

Re: DCIS. - confusing information

Oh i thought you had yours. I hope we dont have to have anymore treatment.. good luck Schumi toox
Coralie Stephney
Member

Re: DCIS. - confusing information

My appointment is at 11 am too. Snapx
Poppyfields
Member

Re: DCIS. - confusing information

Thank you both of you. Good luck Coralie. My app is at 11am UK time.
We'll be with you in 2 weeks schumi, hopefully it won't go too slowly.

I've had a few longer walks this week and feeling a bit stronger.
Take care all.
Xx
schumi12
Member

Re: DCIS. - confusing information

Good luck Poppyfields and Coralie.  I had my op before both of you and I don't get my results for another 2 weeks!! xx

Coralie Stephney
Member

Re: DCIS. - confusing information

My results tomorrow too, to see what was in the breast. Back to Guy's. Good luck for you. I feel more energetic each day. Im going for a good walk every day then resting. Im pretty straight up and wound almost healed exterior wise. The most pain is from my knee and my right arm from the vice like position in operation. Lol. hope you get good news tomorrowx
Poppyfields
Member

Re: DCIS. - confusing information

Hi. Thanks for telling me your experiences, I really appreciate it.
Well results tmw... I'm feeling quite calm at the moment. I just want to know.....

I'll let you know how it goes. Xx
Coralie Stephney
Member

Re: DCIS. - confusing information

I Agree with Schummi, im also delighted with my results too. I only had my right boob reconstructed from my belly. My boob had really shrunk after the cavity shave so to have a nice matching boob again is wonderful and a flat tummy as well. Im getting more energy every day. Im walking my dog as can't drive yet. My operation was 31st january 14 days ago and i feel great. It was DIEP versus Implant but i had read about a lot if infections with the implant so i followed Steph and Schummi and very grateful.
schumi12
Member

Re: DCIS. - confusing information

Hi Poppyfields, good luck with your pathology results on Thursday.  I had my right boob reduced to match my reconstructed left breast and I am delighted with the results.  From a very large G/GG cup to a C!!  Let us know how you get on on Thursday.  Schumi xx

Poppyfields
Member

Re: DCIS. - confusing information

Hi ladies, just wondering how you guys are doing?

I have the case of the rapidly shrinking boob since my quadrantectomy on 25th jan. Finally seeing my surgeon on Thurs for my pathology results and will talk about options for reconstruction or reduction of other boob to match vs prosthesis (results dependant ofcourse.)

Im getting nervous about the results now.

Best wishes

Xx

Coralie Stephney
Member

Re: DCIS. - confusing information

Yes it is. I had sterri strips around the boob but just glue and this rubbery paint on belly button and stomach wound. Also a kind of glue too which they stripped of yesterday. Paint looks a bit unsightly.lol
schumi12
Member

Re: DCIS. - confusing information

Isn't it funny Coralie how different hospitals have different ways of doing things. I never had any paint on my tummy or belly button just glue and the only dressing I had was on my abdomen when they took out the drains and that was only for a few hours.