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mastectomy after 2nd failed WLE

15 REPLIES 15
Sonia C
Member

Re: mastectomy after 2nd failed WLE

Hi Somerset,
Yes you were lucky finding the 2nd lump when you did, it really is such a frightening thing dealing with BC! My nurse told me that she sees people who have left it so long to seek help either through fear or negligence that there is often very little that can be done for them! I am so grateful for this forum & whilst I wouldn't wish this on anyone, it is really nice to communicate with people who are/have been through the same thing. S xx
somerset
Member

Re: mastectomy after 2nd failed WLE

Hi Sonia

The surgeon told me I was lucky after the second mx.  It wasn't quite the word which sprang into my mind - especially once the onc suggested chemo/herceptin.  However, I knew what he meant and it's really the only way to look at it - I was very lucky it was found when it was.  I could have refused chemo (and radiotherapy) but the onc was very certain that herceptin was a good idea (and at the time you could not have it without chemo first - this may change as there is a trial looking at herceptin without chemo).  I went for the lot because like Joandthetribe I wanted to do everything possible to reduce the risk of it coming back - I am pleased I did.

 

I hope you don't have any more nasty surprises and you can avoid the radiotherapy - it is a real pain when the results are not what everyone expects.  You think you are nearly there and then something else jumps out of the woodwork!   

 

 

Sonia C
Member

Re: mastectomy after 2nd failed WLE

Hi Joandthetribe,
thank you for sharing your story with me and that is great news that you treatment is nearly over! You never imagine when you first present with a lump that you are going to have such a roller coaster of a ride! I cannot believe I will be going for my 3rd surgery, it is such a pain! I wonder how many women would opt for a mastectomy rather than a lumpectomy (with possible mastectomy afterwards) & radiotherapy. I am not particularly keen on the idea of radiotherapy & if a mastectomy means avoiding it then that has to be a good thing. I had zoladex years ago before having fibroids removed. That is a great idea that they can give you injections to avoid osteoporosis & possibly bone cancer. I just hope I don't get any nasty suprises after my surgery which seems to keep happening to me! Best of luck to you. Sonia xx
Joandthetribe
Member

Re: mastectomy after 2nd failed WLE

Hi again Sonia

 

After a clear mammogram in October 2015 I found a lump in the upper inner part of my breast back in May this year and after the initial biopsy came back as inconclusive had to have an excisional biopsy of the offending 'lump'! To everyone's surprise (I had been told this was absolutely nothing to worry about and presented on the ultrasound as a classic fibroadenoma) This came back as a 10.5mm grade 3 invasive cancer ER/PR+ and HER2-. So so lucky to have caught it early.

 

The inital plan was to do a further lumpectomy as an area of high grade DCIS was also found and the surgeon didnt quite get clear margins. They also needed to biopsy lymphnodes.

 

I decided to opt for the most aggresive treatment path possible as I have a strong family history of BC and didn't feel I would be able to move on without knowing I had reduced my risk as much as possible. I was also worried about having to undergo further surgery if they didn't get it all. I had to undergo a psychological assesment but am completely happy with my decision and end result (although they are still healing)

 

Because I had the double MX I will not need radiotherapy, but am 3 sessions into 4 cycles of EC chemotherapy which was recommended as an insurance policy because of my age and grade of cancer. The % benefit of chemo over 5/10 years was actually pretty low and I think I could quite easily said I wanted to skip it, or asked for Oncotype testing, but decided I wouldnt have been able to live with the psychological torture of knowing I hadn't taken every measure possible to prevent a recurrance. And it actually hasn't been anywhere near as bad as I was imagining. Can't believe I have only have 1 left to go!

 

In addition I will be receiving Zoladex injections every month for the next 2 years, which put my ovaries to sleep and put me into a medically induced menopause, and to counteract the possible risk of osteoperosis will have an injection every 6 months for 2 years of a bisphosonate called Zoladronic Acid - this has the added benefit of helping to protect against secondary bone cancer and I believe is a relativley new treatment offered.

 

I will also be taking Tamoxifen for 10 years.

 

Think that's all! Phew!!

 

Kiki2
Member

Re: mastectomy after 2nd failed WLE

Yes because the patches of DCIS were too far apart for a WLE! 

Sonia C
Member

Re: mastectomy after 2nd failed WLE

Thank you Kiki2,
Did you have a mastectomy as your first surgery?

Sonia x
Kiki2
Member

Re: mastectomy after 2nd failed WLE

I think it's really hard to predict how long you will need and it depends on the job. I am also pretty fit so recovered well but was also concerned about any accidental knocks etc at school! I think everyone is different so I wouldn't make any promises until you see how you feel! Xx

Sonia C
Member

Re: mastectomy after 2nd failed WLE

Hi Joandthetribe,
Thank you for sharing your experience with me which I really appreciate. What was your original diagnosis & did you need any further treatment after your surgery?
I wish to be honest they had just done a mastectomy to start with!

Sonia xx
Joandthetribe
Member

Re: mastectomy after 2nd failed WLE

Hi Sonia C 🙂

I had a double mastectomy and strattice reconstruction on August 25th and was back at work on 19th September. I had 2 drains in each breast for 2 weeks after surgery and apart from tripping over the long tubes and a bit of pain in my ribs where they were pressing found the whole thing much less scary and painful than I was expecting.

Good luck to you x
Sonia C
Member

Re: mastectomy after 2nd failed WLE

Hi Somerset,
Poor you, that is unlucky regarding your 2 x mastectomies & scary that the 2nd one involved chemo etc! I really hope I don't need any further treatment after this next operation. It is always hideous waiting for results, I get so incredibly nervous! How are you now? S xx
Sonia C
Member

Re: mastectomy after 2nd failed WLE

Hi Nic,
Thank you for your feedback. Your op sounds identical to mine.
I was told I would need at least 4 weeks off work but I love my job so much & absolutely hate being off work, I was sort of hoping I may be able to go back after 2 or 3 weeks! Am I being unrealistic? I do recover really well from operations. Best wishes. S xx
Kiki2
Member

Re: mastectomy after 2nd failed WLE

I had the op you are having in Feb 15, with pigskin mesh supporting the implant. I was in hospital for 2 nights, but sat up eating within 2 hours of coming back from recovery. For the first few days/weeks it is quite painful to be upright, sitting or standing because everything pulls on the chest wall muscle, so you have to build that up gradually. I had 2 drains to start with, they usually give you a little bag to carry them round in, one was taken out before I went home the other was in for a week. Make sure you do the exercises they give you once it's ok to do so as you have to really work on regaining underarm mobility. The implant feels a bit like a football for a long time and you will be very aware of it and have twinges for well over a year, but I can say that now 18 months on I am not so aware of it and it doesn't ache unless I do excessive exercise. The result is good and matches the other one well (apart from the droop). I am glad I had it done. I was off work for 8.5 wks after the op, I'm a primary teacher. Hope this is helpful, good luck with your op, if you have any other questions please ask, Nic xx

somerset
Member

Re: mastectomy after 2nd failed WLE

Hi Sonia

No I did not have very much pain - they suggested some painkillers if required but I did not really need them after a few days. It is important to do the exercises they give you (when they tell you it is OK) - I did have some soreness/slight pain under the arms afterwards (in fact any pain I did have was really under the arms - had sentinel node biopsies as part of the mx both times so I think that is why).  Apparently the exercises help in the long term because with luck they stop any scar tissue being in the 'wrong' place - because you have re-established 'normal ' movement!  I still get twinges under the arms occasionally but not very painful (more a reminder to be careful about carrying heavy weights etc).

 

After first mx I did not need any more treatment - it was DCIS that side and the nodes were clear.  Unfortunately the same was not true of the other side.  Three months after first mx I found a lump - nothing had shown up on mammogram (when the DCIS on the other side was found).  U/S looked OK but due to history they did biopsies which showed high grade DCIS.  After mx it turned out there were invasive cells (not in the lump though - that was harmless!) - hiding as the onc put it - but nodes were clear.  It was ER- but HER2+ so chemo and herceptin.  Radiotherapy was borderline but the onc was keen so thought I might as well throw everything at it.  Trying to ensure it did not come back - fingers crossed......

 

Sounds as though your scar should be fairly well hidden which will be good.  Hope you don't need any more treatment after the mx - it is good when you get to the end of the treatment!

Sonia C
Member

Re: mastectomy after 2nd failed WLE

Thank you for your msg Somerset. I guess you also have a,bit of reassurance that the cancer is less likely to come back? Did you have radiotherapy afterwards? I have been told there is a very good chance they wont have to do it now.
Were you in much pain afterwards? They are going to use the same incision under my breast where they did the WLE so I guess it should be farely hidden & neat
Thanks for sharing your experience with me

Sonia
somerset
Member

Re: mastectomy after 2nd failed WLE

Hi Sonia

Sorry you ended up with mx after two failed WLE. I actually wanted mx and after first failed WLE they agreed - after mx it turned out there would never have been a clear margin because, as in your case, it turned out that all the other cells were in the process of changing (benefit of hindsight I suppose).  Made me feel the WLE was a waste of time - could just have had one op!  Did not find the mx too much of a problem (have actually had two now because later a problem turned up the other side).  

 

On both occasions I had the drains removed before I left hospital - at the point when they thought enough fluid had drained to mean that this would be OK (they were measuring it).  I was keen to get out but not keen to leave with the drains so it was fine by me!  I did have to go back a few times to have seromas drained (particularly on one side) but I don't think that was anything to do with timing of having the drains removed as very little fluid was draining when they were removed and it took time to build up  - apparently it frequently happens (and can even happen again months later - luckily not in my case).

 

I should note that I did not have any form of reconstruction.  I am not sure if this might make a difference in terms of how long you need the drains in - it could do.  Hopefully someone else will be along who has had implants.

 

Best of luck.  Hope it all goes well.

Sonia C
Member

mastectomy after 2nd failed WLE

Hi, I have just found out that I now need a mastectomy (with an implant inserted at the same time) after 2 failed WLE due to unclear margins. I had a grade 2, stage 1, 2cm lump removed with no node involvement however there appears to be Microscopic pr cancerous DCIS floating around hence the need for the mastectomy. Has anyone experienced a similar situation & how did you find the mastectomy? I have been told it is a 2 you op(skin sparing) where they leave the nipple & insert the implant underneath the breast bone muscle. I am more worried about having massive drains hanging out afterwards! I would appreciate anyone's experience with this type of surgery, aftercare etc? Thank you. Sonia xx