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[Aggie]

  Hi Everyone,

Not too much of a regular poster but a regular reader. 
Had DCIS (non invasive breast cancer in 2012) WLE (small op) to remove and radiotherapy.  Was on the 5 year follow up screening program and last screening was May last year and clear.  Peri menopausal symptoms kicked in hard also last year and was surprised and delighted to be offered HRT in July but obviously the fact that I was a higher risk was explained to me but given my extreme mood swings it was deemed worth the extra risk.

Was on a very low dose of Sandrena gel (0.5g and 200mg of  Utrogestan for 12 days) Lots of relief from symptoms and ticking along nicely but found a lump recently.  The lump's turned out to be nothing thankfully but the micro calcifications have returned.  As I've already had radiotherapy they can't do it again so it means a mastectomy.

I want to emphasise the reason for the post isn't to scare anyone but for ladies on HRT with breast history to be vigilant.  No-one so far has suggested that the HRT has caused the reoccurrence, and said it couldn't have happen that quickly, and I would have no regrets - I've had 8 hours sleep every night since August, managed not to punch anyone in Tesco and been much more like my laid back self - sadly after only two weeks I can already feel the effects wearing off!  😩😩.  Suggestions on how to sleep properly (the holy grail huh!) greatfully recieved.

Aggie 😬

[Hurdity]

Hi Aggie

So sorry to hear about your ongoing breast problems and thank-you for telling us on here because it is so important to be vigilant. Normally I did think that oestrogen recpetive breast cancer ( even the non-invasive type) was a contra-indication to HRT but in your case it helped you get through a difficult patch.

Just to wish all the best with your forthcoming op and presumably do you have to take Tamoxifen or similar afterwards and that HRT will then be out of the question?

There are several prescribable non-hormonal alternatives to HRT for those women in your position who may not be able to take HRT (if this won't be possible) and hopefully the docs will explain this to you. Maybe you could start soon if you have stopped HRT and symptoms are coming back. I'm not sure how they would help with sleep except that hopefully you would not be woken by night sweats if they work. I think the most recommended are given here:

Since paroxetine is the SSRI with the best evidence for efficacy19,23 effective at 10 mg daily, it is the SSRI of choice for patients not taking tamoxifen and the more usual 20 mg dose chosen if an antidepressant effect is also required.

Venlafaxine is the preferred treatment for breast cancer survivors taking tamoxifen, and at 75 mg, there is significant reduction in hot flushes with concomitant improvement in fatigue, mental health and sleep disturbance.27

Here is the link:
http://journals.sagepub.com/doi/full/10.1177/2053369117711646?hootPostID=6690d93930a10b86869c48433ab506e7

Hope this helps and hope the op goes well - do let us know

Take care

Hurdity  x

[CLKD]

It does make me wonder why women aren't offered mastectomy initially when a lump is found?  I had decided that I would have both breasts removed but was told by my Surgeon that "ladies with your condition don't require breast removal".   After all we are going into menopause and if necessary, HRT can give a good quality of Life. 

I did feel at the time that removal of the lump, followed by a bone scan, radiation treatment and regular follow-ups and mammograms was 'getting rid' of anything nasty. Tamoxifen isn't without it's dangers, not often explained fully.  Womb cancer can occur and it made me so ill I almost died.  I couldn't eat  .  I stopped it after 3-4 months - that was in 1990s.


Do you have to undergo surgical intervention or is it a wait and watch?  How certain is the Oncologist that the HRT has actually encouraged a possible recurrence?  I hadn't realised that radiotherapy wasn't an option after initial treatment 

Would you opt for bilateral surgery?  That way HRT can be re-considered.

[racjen]

It's general policy not to deliver radiotherapy twice to the same site - the risk is just too high. DCIS is generally not considered serious enough to warrant mastectomy as it's non-invasive (and not even considered to be cancer as such by some doctors), unless it's a very large area or multiple areas in a small breast. I was told I'd need a mastectomy for DCIS before they then did a second biopsy and realised it was in fact invasive cancer - tbh I'd have gone for it either way, would rather be safe than sorry.

Aggie, you don't actually say whether in your case the DCIS was hormone receptor positive or not - that would obviously make a difference to whether HRT was a good idea or not. I think many doctors in these cases will weigh up the small risk of cancer recurrence against the importance of quality of life, and as many of us on here know, extreme menopausal symptoms can absolutely wreck your life. I requested HRT after breast cancer and it was deemed OK because my tumour was triple negative, but to be honest even if it hadn't been I think I'd be prepared to take the risk, as my life hasn't felt worth living for much of the time since treatment.

[Aggie]

Hi lovely ladies - thanks for your replies.

Another of my bloody horrible meno symptoms is severe brain fog which means forgetting to ask the right questions, and even forgetting to write down the questions so I don't forget to ask the questions. (another reason to be thankful for the short time on HRT is that the improvement confirmed I'm not getting early onset dementia) This symptom kicked straight back in after a week 😩. Anyway a long winded way of saying I don't know if it's hormone receptor positive or not.  They certainly didn't tell me it was but maybe because I didn't ask.  My GP (who isn't particularly knowledgeable on HRT and didn't prescribe it) told me to come off, and although my symptoms are horrid, I've been focusing my energy on trying to choose what path to go down for the mastectomy (immediate recon, flat chest or implant) rather than what to do about the symptoms.

Hurdity - thanks for that link - sounds like an alternative that may have some if not all the benefits of HRT.  That gives me hope 👍

CLKD - my goodness that sounds terrible - yes not everyone can tolerate Tamoxifen -it's not been mentioned as an option yet - I think I'm what they call ‘very unlucky' in the cancer world. Usually a lumpectomy with clear margins and radiotherapy reduces the risk of reoccurrence to 15% and I'm in the 15% 😩.  I would probably consider bilateral for safety's sake but it's not been mentioned and as the left is perfectly healthy I guess they won't offer. 

Racjen I'm so sorry to hear you've been feeling like that since treatment.  I'm a strong and healthy person other than the meno symptoms and very concerned that this major surgery is gonna take that away from me.  One of the booklets they gave me this time around said that DCIS is actually cancer, even though in 2012 they told me it was precancerous and therefore not actually cancer.  A mastectomy does feel a bit like overkill but as it's shown it's head again relatively quickly I'm thinking just get rid as I'm probably predisposed.

All a bit unnerving going yet another journey into the unknown 😬

Xx

[racjen]

Hi Aggie

to be honest I'm gobsmacked they haven't told you whether the DCIS is hormone receptor positive or not cos that's crucial to the follow-up treatment.Having said that I don't think they'd give tamoxifen or similar, because it's non-invasive - once the breast has been removed it's not going to recur elsewhere in the body, it's confined to the milk ducts. To put your mind at rest, my mastectomy was a pretty minimal procedure compared with the other stuff I went through, I wouldn't call it a major operation (physically at least). It was day surgery and I recovered and healed very quickly. It was the chemotherapy that really caused the trouble, as along with being bloody awful in general it sends you straight into the menopause; for me that was like being hit by a truck and has caused a lot of depression and anxiety problems. Again you won't need that as the DCIS won't have gone anywhere else in your body. In your shoes I'd go for the mastectomy - also I opted not to have reconstruction, as that does make it into a more major operation,and I'm quite happy flat!

[aspie65]

Please talk to your doctor about pregabalin. It is very good for anxiety and sleep and has recently been found to help with hot flushes.  Most GPs aren't aware of all these uses of pregabalin and focus on it being used for epilepsy (its original use) and pain management.  I have found it to be an amazing drug and my GP is so convinced of it's benefits that she is now recommending it to other patients.  It is not hormone based and can be safely used long term without any build up of tolerance. 

[CLKD]

We are a Mine of Information 


Can anyone explain : micro calcifications : and would they have sat quietly without you having found the lump?  What is the lump if it's not sinister?  Do you feel rushed into making a decision?

I had a different relationship with my breasts after treatment.  Kept both which I was going to get rid of if the 'C' word was mentioned. Since then though I would be more concerned ........ how do you feel generally about yours?  I wouldn't have opted for reconstruction either.  Risk of 2 GAs would outweigh that decision for me.

Did U not get any drug treatment as I did?  There is another that is used post op. can't remember the name  .

Pre-disposed means what exactly  .   We get it or not.  Same with  depression.  There was a lot of talk about being pre-disposed but no one was interested when I wanted to examine the reasons why I suffered - genetic or not? 

Let us know how you get on.  I thought about you a lot as I was in my bath last night  - I would opt for mastectomy but not chemo ......... if it hadn't worked the 1st time around and I would want to know if it's the 'same' cancer ......... not that I"m picky or owt.

[Aggie]

Thanks for your replies - yes you are all a mine of information - love it 👍😄

Racjen - I'm thinking actually there may not even be any follow up treatment as it's not being mentioned - I asked if I would have to have chemo but apparently it's not a treatment for DCIS unless they find something invasive after the op.  I've written it down now to ask if it's hormone receptor positive 👍.  I'm sorry it sounds like you had a terrible time with it all - I'm glad you're happy with the choice you made - my boobs ain't nothing to write home about but I'm not convinced I will cope very well with looking down and only seeing one. 😢

Aspie65 - thank you I will look into pregabalin - that would help with two of my symptoms - my major mood issue is anger/irritation - I don't know whether something that works for anxiety would help with those issues.  Would be interesting to find out.

CLKD - From my understanding so far there are micro and macro calcifications (not sure enough of the differences to comment here.) Quite a high percentage of women have them in their breasts and they are completely benign and will never do anything. Sometimes, depending on how many and what the formations of the clusters are like (on the mammogram it looks like icing sugar). Once they become aware (via mammogram/ultrasound) they will investigate to double check.  Despite having biopsies before my surgery last time, they weren't able to determine if it was anything sinister until they got it out and had a proper look.

The only treatment I had last time was radiotherapy, no drugs.

Pre-disposed was the word I gave it - the Onc was just hinting that as I had it once and it was back quite quickly the chance is it may keep reoccurring - I don't have access to my biological family's medical history and they say it's not worth taking the gene test as only 5% of cancers are genetic so really not sure on that one.


So we'll see - I've been considering my options - yes I do feel a little rushed - they have a timeframe to adhere to but I want to be sure I'm making the right choices for myself and won't let them push me but so far they've mostly been great - very helpful and informative. 😄👍

Xx

[racjen]

CLKD, i'm a bit confused - what exactly were you being treated for if the C word (as you put it) hadn't been mentioned? If you didn't have surgery I'm assuming there was no lump, or maybe you just had a lumpectomy so still have your breasts. It'd help to be a bit clearer about  what exactly we're talking about here? I'm no expert on the science of micro-calcifications but they are a sign of possible cancer and are always investigated, even though most of the time they 're a sign of DCIS, which is non-invasive and so debatable whether it can be classified as cancer at all. Drug treatments after surgery for invasive cancer include tamoxifen, aromatase and a number of others if you're ER/PR +,and or Herceptin if you're HER2 +. None of these will be offered if you're triple negative.

[CLKD]

I found a lump on 16 Feb. [?1991?].  I knew immediately.  My Surgeon told me it was non-sinister but it had to be removed, at operation it appeared benign.  However, at histology the lump had 'changes in the margins' and it wasn't sure if that would have been slow or fast growing.  I underwent further surgery to have lymph glands removed and these were clear.  Pre-cautionary radiation treatment followed.  Regular mammograms and checks followed and Tamoxifen was prescribed, again as a pre-caution. It made me SO ill that I stopped taking it, now I know it comes with it's own risks  .

I stopped wearing a 'bra.  Got it, flaunt it  hope that's clearer?

I am now back into the NHS Mammography programme over every 3, I think years ........

[racjen]

Yes, thanks for the explanation, was getting a bit confused. Women who haven't had this whole horrible breast cancer thing tend to think it's pretty black and white, you either have it or you don't, whereas in reality it's much more complicated than that, as your story demonstrates. I think the whole uncertainty thing makes it so much more awful, plus the fact that breast cancer seems to be unique in its ability to hide away dormant for many years after treatment and then come back stronger than ever. I think that's what freaks me out most - with quite a few cancers you can pretty much say that if you get thru a year cancer free you'll be fine, but BC isn't like that - it's like a life sentence of anxiety.

[CLKD]

Is it the same cancer though?  May be in the same area of the body but may not be the same cell type.

Many men die with rather than from prostate cancer for example.  Some ladies don't develop breast disease until well into their 70s.  It isn't the biggest killer either heart disease etc. have higher mortality rates.

Aggie - how R U?

[Aggie]

CLKD I'm ok thanks mostly...

Just itchin and bitchin as the as the oestrogen drains away.... 😩
One of the great things about bring on HRT for me that was I hadn't even realised that my EXTREMELY itchy back was a peri symptom, and now it's back with a vengeance. 

I'm trying to ponder my options treatment wise but can't  hold a thought in my head for very long as brain fog is also dominating the return of symptoms. 

What do non HRT peeps do about itching and brain fog? 😬😄

[CLKD]

Not a lot  .   My insteps itch as I step into the bath most nights - as soon as I take my socks off.  My back itched during peri after my bath, like I hadn't dried properly - Himself rubbed it every night.  Now it's occasional.

As oestrogen levels drop off so the body may become dry: inside and out    - do read our threads on vaginal atrophy!