Early XMAS present
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Dandelion
Member Posts: 102 ✭
Two days before xmas I was dx with multi lobular cancer Estrogen positive.
I have had a Mastectomy left breast with tissue expander mid jan ( my tissue expander feels like it's going to burst) and sentinel one of the three nodes were positive.
5 weeks later back for an axillary clearance. 14 nodes clear.
I was so emotional strong to get through the two Ops but now I feel the pain and the sadness of cancer 
It's been two months since mastectomy and 4 weeks since axillary.
I'm dedicated to my exercisers and determined to get full arm movement back .
I really miss sleeping on my side and Iv forgotten what it's like to sleep the whole night through. I miss my hot baths too . I miss my old life.
Haven't shaved under my armpit in fear of lymphedema ( that's the least of my worries a hairy armpit, the other is waxed 
Last week I started zoledex and having a crash course in menopause.
No chemo , will start radiation in 3 weeks then with aromatase I think is what my oncologist said .
Iv got lots of questions.
One , im worried about the radiation on my breast , nodes in my collarbone and the extra risk it will have for lymphedema . Is the anything that I should be doing before treatment ?
Has anyone had radiation after a mastectomy with one positive node ?
Apparently this is the new way 1-3 nodes positive no chemo , but radiation (hope there right about this) docs said I could go either way , so I chose rads .
Oh just found out to that I have osteopenia, Im 45 (single mum) and have only just started this journey so not sure what that means only that thai feel like a spiral effect .
On a positive not my new temporary breast looks better than the other one lol , and now wish I had the right removed as well but surgeon believes there's no need to do that .
I just hope the radiation doesn't ruin such skillful work of my surgeons.
Iv been navigating myself around all the post and you sound like an amazing bunch of loving and supporting and very knowledgeable woman.
Thanks for the add
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Welcome @Dandelion. If they're planning on rads they tend to over-expand the tissue expander so if the skin shrinks a bit after rads it will be fine for the new softees. It took about 6 weeks for me to get used to my tissue expanders and I found a little neck pillow positioned under my side and allowing the boob through the hole allowed me to sleep on my side. ..also hugging a flat pillow and 1 behind my back. Once I could do this I finally slept through. I've had my expanders in 14 months and am used to them now. Hoping you won't have them as long.
Osteopenia is low bone but not low enough to be osteoporosis. Something to be watched when you go on hormone blockers. You'll have yearly bone mineral density scans I would imagin
Hope this helps. Kath x1 -
Hi @Dandelion
- Did you have a Ldex reading done prior to surgery for your fluid in your body levels? If you did ask for another reading also ask the breast care nurse if you should wear a sleeve as a precaution ? I had one given to me the week I started as the BC nurse attached to rads unit said oh your arm is a bit puffy sleeve & glove for you.....
- I had osteopenia prior to BC now have osteoporosis and on PROLIA injections every 6mths and on supplements of calcium and vit D
- I am a single mum I got through this and I am 4.5years out the other side...
- Ask your BC nurse about when you can wax again I left waxing until I was 2 years out but I had no hair as I had chemo for 9mths....
- before you know it you will be sleeping back on your side and having hot baths again...
- keep your skin moisturized with something like Moo Goo to keep it healthy as it heals
- our treatments are advancing all the time so what they offered back in 2012 has now changed to what they know works better now.
Hugs
Soldier Crab
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Pimek, wow 14 months !! I probably won't be to far behind you.
I do recall my surgeon saying if rads then he won't be removing them to after xmas0 -
Soldier crab , love the name
mum having troubles posting with my iPhone .
Only have my text is above .
Yes I have had the testing in between the two Ops.
Yhanks for all the tips and I so want to be on the other side 4.5 years on must feel normal and positive, good on you 0 -
Sorry primek , only half my text came through and both my arms are sore from texting and using my iPhone while in bed , still getting use to this network2
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@Dandelion. To tag someone put an @ prior their name. You will find their name will cone up in choices once you start typing.1
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PS ..I got help and just shaved my under arm...nothing too brilliant, but the expander and numbness made it smelly and difficult to shave as it encroached the area a bit. On hormone blockers don't need to now.0
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@Dandelion sorry that you find yourself here, but you are in GREAT company so much wonderful support and experience amongst us all Thing is, it depends on your complete diagnosis such as Stage and Grade as well, Im ER+ only 2.5 cm Stage 2 but Grade 3 which determined Id have Chemo. BRCA Gene negative and no node involvement. I had rads in 2011 at first diagnosis, it does change the boob it became harder than the other and it does change the skin, dont know how it affects with an expander. Recurrence 2015. Ive just had a Mastectomy/Diep Flap recon as I had rads before so not a candidate for Expander or nipple sparing. Im 4.5 weeks and though a massive operation all at once, Im glad it was done all at once, plus I didnt want an implant so am happy with flap recon so far It is hard and you know, we are so strong doing and getting through what we have to at the time, but in those quiet moments when we stop,it hits!!! and it can be overwhelming and just a deep sadness. After 6yrs I still hit these moments, eventhough Im recovering and at the end of this ordeal and moving on. There are still aspects of my life I miss that will never be the same...the biggest thing Ive noticed is treatment has aged me dramatically and natural i suppose its traumatic, but frustrating too as BC didnt the treatment did. Big hugs!! You'll manage rads no worries. Melinda xo 1
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Hi @Dandelion, I had a left mastectomy last August with 3 positive nodes. I had 16 rounds of chemo, due to widespread lymphovascular invasion. I am currently having radiation, completed 8 out of 25. I developed lymphodema before radiation & my therapist thinks it was due to chemo even though I had 12 nodes removed. It is mild & I am wearing a sleeve. I had my arm measured very early just in case so it was a baseline. I haven't shaved since mastectomy as hair hasn't grown back & I still have a lot of numbness in my arm 8 months on. I am a side sleeper too & found it difficult at first but am now sleeping on my side. Don't worry too much about osteopenia, most people over a certain age have it. I do too & have just started Femara. One day at a time & try not to think about things that may not happen, best wishes!2
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So sorry for your diagnosis. I wanted to reinforce what others have said, get your arm measured before you start radiation so you have a base point of reference. I didn't, and physios have said how useful it would have been if I had.
Also good news you don't have to have chemo, in my experience radiation is easier. It's not a walk in the park with tiredness and possibly burnt skin but nevertheless easier than chemotherapy. Plus you don't lose your hair etc.
Wishing you you the best of luck. Karen0 -
Hi @Dandelion, you have lots of similarities to my story - I had a single mastectomy and radiation treatment after 2 large lobular tumours (both estrogen positive) were found and one node tested positive so then had a axillary clearance. I also had a sneaky ductal tumour that was HER2 positive so my treatment also included chemotherapy and Herceptin and am now on Tamoxifen.
I am now 5years on from that diagnosis and doing well although I do have lymphodema and think this could have been helped by wearing a compression sleeve during radiation. Finding a good lymphodema therapist that will measure and monitor your arm and show you how to do self-massaging is really important. You may not get lymphodema, it is certainly not a given, but it is important that you make sure your skin is well moisturised, not only in the radiated areas but on your arm to try and maintain skin integrity. I found the radiation nurses really helpful and supportive throughout that time and their advice was to use the Moo Goo products, which I did and loved.
I was also diagnosed with osteopenia, which felt like another blow, and so although I am now post-menopausal (was pre-menopausal before treatment) I am staying on Tamoxifen as it is better for bone strength. I also am having Allendrobell (once a week bone strengthening tablet) following a bad fracture to my wrist last year. I also have Vitamin D. I am due for another bone scan now to check how things are going.
Best of luck with your treatment, it is tough, especially as a single mum, so don't be afraid to ask for and accept any help offered, it was the best thing I could have done xx1 -
Hi @melclarity it's not so bad when you get to meet all you lovely ladies0
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@Dandelion Big hugs to you! and there are alot of us here, ready to listen or help anyway we can support. xo Melinda0
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Thanks @melclarity, I just sent a big whooping text responding to all the ladies who commented and appears only to lines appeared addressed to you0
