fibrocystic breast, pain or choose surgery

[roxy13]

I am 45 yrs old and have severe fybrocyst deasease. My breast are 75% to 100% cysts. The pain has gotten unbareable.I have seen 3 different surgeons 2 of the 3 have recommended bilateral mastectomy with reconstruction.I am working with medical insurance to try to get coverage but this is very difficult.They have approved the mastectomy but will not cover reconstruction(cost of $58,000 to $72,000). As it stands right now I have to decide whether to be in pain for a long time or live my life without breasts. I have been told that due to this condition early detection of breast cancer will be difficult.Are there other alternatives?

[Fortworth444]

A related discussion, Fibrocystic Breast pain and surgery was started.

[roxy13]

first I'd like to thank everyone for their help. Irealized after reading your replies that I left alot of holes in my original question.The first surgeon I saw was a breast specialist with more than 30 yrs experiance. Tracking a family history of breast cancer is difficult, my greatgrandmother had breast cancer but past that it is impossible to find anything out. I drink decaf coffee,uncaffinated sodas,and i eat very little chocolate.I take tylenol,advil on a daily basis and am now on darvon to help me get some sleep at night. I wake up in pain at night just fron rolling over in my sleep. I have had ultrasounds done but there are so many cycsts that they cannot see them all because bigger ones hide the smaller ones. The cycsts are growing and new ones develope regularly. I have gone from a 32A to a 34b bra size because of them. they have affected every part of my life. I have two grandaughters and have come close to dropping them more than once because when picking then up they have bumped a breast.cuddling with is also painful. I have pain nearly 24/7 it's hard to sleep,do my job,and most of my daily tasks. My husband and I have dicussed the pro and cons of surgery many times. We have decided that recontruction or not I am going to have the bilateral mastectomy.Again I Thank you all!!!

[healthcareguerilla]

It seems to me a bilateral mastectomy for pain is incredibly drastic.  I would certainly consult with other physicians, nurse practitions, naturopaths, anyone else.  A mastectomy is a really big deal.  And the advice from CCF-RN JSN should be pursued first. "Some recommendations for treatment of breast pain involve simple comfort measures such as a supportive or exercise bra, or application of warm or cold packs. Caffeine avoidance, limit salt intake and reduction of dietary fat may also help."

You do not say if you have had a mammogram or ultrasound.  If you have not, at least have an ultrasound.  Truly, do not drink coffee, or colas.  Cut out chocolate...do all these things first to see if the pain subsides.

Have you read Susan Love's (MD)breast care books?  She has a website that would be worth investigating.

You can also put warm cabbage leaves on your breasts.  It is amazing how that can work.  Beats the hell out of cutting them off.  Worth a try.  Really cheap.  Comforting, too. Kind of makes you feel like a mermaid.  But also offers tremendous relief.

Also, you might want to access Susun (that's the correct spelling) Weed's website.  

Can the cysts be aspirated?  You know, Fibrocystic Breast Disease as a disease, is not something agreed upon by all practitioners.  That probably doesn't help you much, does it, except that you might proceed less drastically if you can relieve your mind a bit and not be thinking, "I have Fibrocystic Breast DISEASE!"

One more thing -- what have you been doing for pain relief?  

  

[carme]

I forgot to mention that I did not reveal the BRCA2 mutation to my insurance company. My surgeon was sworn to secrecy too.  We are not protected enough by law against bias from insurance companies. My surgeon got my surgery approved as breast reduction the pain and suffering from cysts and shoulder dents, with strong family history of breast cancer. The LINII was found in the pathology after the mastectomies.

[carme]

I too suffered with fibrocystic breasts that were also very large, heavy, painful and caused dents on my shoulders. To top it off, I'm from a family ridden with breast cancer (BRCA2 Mutation). My mother , 2 of her younger sisters, their mother, all died from it, my younger sister had a stage 3 tumor. I had LINII so they recommended mastectomy. I chose to do both, so did my sister...because we saw it come back in all of the above mentioned ladies and kill them.
My sister being a lot thinner than I, chose TRAM flap reconstruction. She had very hard recovery, but made it through that and her chemo/Radiation too.  I am too active to have given up that layer of stomach muscle so I chose expander/implant recon. My surgeon joked that it was about time I have that breast reduction my 5'2" frame had been suffering with. My body rejected the expanders with massive infections, so I am flat. My husband and I are fine with it...because bottom line is, flat is better than dead.  No one ever talks about how unreal and sometimes uncomfortable the implants feel, at least not where you can hear or read about. I have a couple of friends who say their implants are very unnatural feeling, but they have learned to live with those feelings. Good luck with whatever you chose. Spend a lot of time researching...there are a lot of references out there . God Bless.

[CCF-RN,MSN-JS]

Dear roxy13, Breast pain is a common breast symptom.  The reason for breast pain is not clearly understood, and is not usually associated with breast cancer.  It is sometimes associated with hormonal variations and is then called cyclical breast pain.  Noncyclical breast pain does not seem to be linked to hormonal variations and is often localized to one area of the breast tissue.  Noncyclical breast pain may or may not be the result of an injury to the breast.

Breast pain is evaluated based on the history of the pain you would give to the health care professional, as well as a physical examination.    Some recommendations for treatment of breast pain involve simple comfort measures such as a supportive or exercise bra, or application of warm or cold packs.  Caffeine avoidance, limit salt intake and reduction of dietary fat may also help.  

Bilateral mastectomy is a drastic step - you would want to be sure to have weighed your options and the risks and benefits of these options.   You may benefit from discussion/evaluation by a breast specialist who deals specifically with benign breast disease.  This type of specialist would most likely be associated with a large teaching facility.  You would want to discuss your personal risk of breast cancer, and whether options for medical management of this problem been optimized.

[japdip]

This is purely MY OWN opinion based on personal experience. Had (L) mastectomy 3 yrs. ago and have often thought "why not bilateral?" Being in constant pain for a long time isn't a very pleasant thought .... so, why the hurry for reconstruction ?? My idea is no reconstruction, use prostheses OR go flat. You can be any size you wish and I think that is an option that not everyone has. Of course it would all depend on your feelings regarding your breasts ..... and your husbands too / or whomever. I don't believe there is a time limit on reconstruction and perhaps in the meantime the Ins. Co. might change the rules.  Best of Luck .....